Survey Report Representing
Individuals Lost to MSA

Date of Report: 01/01/2019

Background Information:

In which country/region does/did the individual reside for most of his/her life?

Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont

Region II: New Jersey, New York, Puerto Rico, Virgin Islands

Region III: Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia

Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee

Region V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin

Region VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas

Region VII: Iowa, Kansas, Missouri, Nebraska

Region VIII: Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming

Region IX: Arizona, California, Hawaii, Nevada (American Samoa, Guam, Northern Mariana Islands, Trust Territory of the Pacific Islands)

Region X: Alaska, Idaho, Oregon, Washington

Region XI: Canada

Region XII: Central America

Region XIII: Asia

Region XIV: Africa

Region XV: South America

Region XVI: Antarctica

Region XVII: Europe

Region XVIII: Australia (continent), New Zealand

What was the individual's gender?

male

female

What was his/her primary occupation?

Welder
Teacher
Nurse
Accountant
Commercial beekeeper
Housewife
Electrician
geological engineer
School teacher
Taxi driver
Dentist
Teacher-retired at time of death
Retired
Law enforcement officer, retired
High School Home Economics Teacher
Architect
Spare parts sales. Sales rep
Business owner
Business manager
Housewife, previously photographic developer
agent for Delta Airlines.
Sewing Machinist
Nuclear engineer
Childminding and nursing
Registered nurse
Army Officer
Auto tec.
Business partener and administrative position in panel beating workshop
Teacher union rep
Hardware store Owner
Government department director
Interior designer/decorator
Homemaker
Retired from federal government work
Naval officer
Clinical coordinator
Rehabilitation counselor
Informatics
medical technologist until fully disabled 2005
Office Manager of family-owned oil supply company for over 40 years.
- Compo ?? records (working in black dust for a record making company - labourer in chemical factories (Pfizer & Courtaulds) - ps: Pfizer plant closed and was demolished right after WHIMIS came into effect in Ontario - Courtaulds also closed and moved to the USA (they had a lot of problems with the environment ministry in town here) - also worked as janitor for school board and city
Housewife/many side jobs
A restaurant chef
Losing balance; coordination problems.
Housewife
sales, publishing
Administrative Support
Insurance underwriter
Machinist/cook/dinner lady
Carpenter
Heavy Equipment Operator
He worked for the Milwaukee Railroad.
Navy Helicopter Pilot
Primary school dinner lady
Dental Sales and Technical Services
retired navy commander
Electrical estimator, security software designer
Nuclear engineer.
Self employed. Carpenter, dealt with chemicals alot.
Teacher
Financial Systems Analyst
Fiberoptics network engineer
Operations manager in RAF then as a civilian
Physical therapy assistant
House wife. Help on farm
Engineer
Contractors
Statistician with Bureau of Labor Statistics
Railroad engineer
Artist
Fire fighter
Labor
Teaching assistant
Factory Process Worker - pharmaceutical & drug company
Labourer at Pfizer, Courtaulds and a few other places.
Clerical admin. State of missouri board of probabtion and parole.
Housewife and mother to her four children. She did work, part time, as a cafeteria helper in our children’s grade school
Teacher/Instructor
Radiology Tech
substance abuse counselor
Hadn’t worked for many years due to disability caused while serving in Vietnam. While working before that time he was a physician assistant.
Elementary School Teacher
CPA
Home maker
Physician/Surgeon. (researched and found he had MSA before neurologists etc
Sales
Truck Driver
Life insurance
Warehouse manager
Compensation Analyst
Episcopalian priest
Real Estate sales
Manager
pastor
labourer in chemical factories
Administrator, teleoperating
Business Office Manager
Dietary dept in Hospital
geological engineer (chief mine engineer in potash)
Museum curator/professor of art history

Were there conditions in his/her work environment that contributed to health issues?

Yes

121

If 'Yes', please explain:

If exposure to toxins are contributing factors, my husband was a jet refueler in the Air Force (1961-1964), a motorcycle officer (exposure to carbon monoxide) and a highway patrolman exposed to multiple toxins as a result of responding to traffic collisions involving overturned fuel tankers, automobiles with spilled and leaking fuel, oil, antifreeze; and breathing smoke from burning autos and trucks.
Wonder if the photographic developing solutions contributed?
We don't know.
This was not considered but Michael worked in a nuclear environment and wore a film badge that was always monitored, so it was assumed there was no connection. He had previously worked with asbestos. I am not sure which variety.
Dust- asthma
Not sure, possibly the oil fumes??
- Pfizer caused asbestosis - Courtaulds caused severe health problems because of their chemicals
Stress; expecting more appreciation at work; not getting the recognition he deserved.
Work related stress - large classes with disruptive kids; chief of school exams; chief moderator for national exams
exposure to toxins
Not sure. He worked with building materials for 35 years as a carpenter. Mainly house siding. He was a journeyman carpenter so he handled all types of residential materials. He became a certified welder during the last 5 years before diagnosis.
a lot of chemicals, such as resins, lacquers, etc
Early in raf career bill was air traffic controller and part of his job was as runway controller. This often meant stopping aircraft before take-off and going under the plane when engines running to remove a pin that had inadvertently been left. Also, postings abroad led to multiple vaccinations
Worked around x-ray machines
Unsure
Breathed in metal fumes.
Vietnam Veteran with known exposure to agent orange
Unsure but answered Yes as we have suspicions. He worked for over 30 years in pharmaceuticals during late1960s, 70s, 80s & 90s. Much of this involved mixing raw materials to manufacture things such as penicillin and Pseudoephedrine. etc. He used to get 'damp' from rain coming home and could smell the drugs and materials on him. There was limited protective clothing and extraction
Chemicals and machinery at Pfizer caused asbestosis. Chemicals at Courtaulds caused serious side effects to the nervous system.
long 16 hour workdays created lack of sleep and lots of stress. Simultaneously caretaking for his ill mother compounded this issue at known onset.
Exposure to agent orange while in his work environment when he served in VIETNAM IN THE late 1960s.
toxins
We live in a very small town Rick worked in oil refinery 25yrs plus. There are 44 people within a 3-4 mile radius with Parkinson 18 on the list worked at the oil refinery . NO BRAINER. Rick had MSA confirmed by autopsy
Of course, no proof, but I believe it contributed to her having Multiple System Atrophy.
-many chemicals that caused severed neurological side effects -also had pulmonary fibrosis from working with asbestos
Not to my knowledge
Worked in laboratory with high frequency radiation. Soldered. Also worked with video games. One fell on his foot.
Pesticides
Chemicals
She worked in an extremely stressful work environment. Unfortunately, some of the stress she created for herself, by not setting firm boundaries with her clients. She believed that the stress contributed to her disease. She noted that many of the female partners with whom she worked developed serious health conditions (most of them brain-related), while the men did not. She wondered if this was because men generally seem to compartmentalize stress better than women do. (I knew Elizabeth through work.)
He always felt working on cement floors caused his arthritis.

Diagnosis Data:

With which type of MSA was the individual diagnosed?

MSAc

MSAp

uncertain

What was the age of the individual at the time of his/her death?

40 or younger

41-45

46-50

51-55

56-60

61-65

66-70

71-75

76-80

older than 80

After receiving diagnosis of Multiple System Atrophy, approximately how long did he/she live ?

less than 1 year

1 year

2 years

3 years

4 years

5 years

6 years

7 years

8 years

9 years

10 or more years

Please indicate any of the following which he/she had experienced PRIOR to diagnosis of Multiple System Atrophy:

Prior single traumatic brain injury

Prior multiple traumatic brain injuries

Prior single head trauma resulting in concussion

Prior multiple head traumas resulting in concussions

Prior history of chronic headaches

Prior neck/back injury

Prior multiple neck/back injuries

Prior high level of exposure to chemicals/toxins

Prior exposure to high levels of stress

Prior diagnosis of Post Traumatic Stress Disorder (PTSD)

Prior diagnosis of Neurological Illness

Family history of neurological disease

none

Please expand on your answer.

Possible exposure to toxins in northern Maine from spraying of potato fields. First diagnosed with Parkinson's Disease. From initial diagnosis of PD to death was 7 years.
Dementia + Parkinsons Disease
Wayne played football as a child, don’t know if he had concussions or not
Herniated discs not related to trauma
Photographic developer
My brother hurt his neck at work and had 2 surgeries, but it had always hurt him.
My mum had previously been diagnosed with breast cancer and had to undergo several rounds of chemo and radiotherapy
Over 20 years prior fell off a loft ladder, hitting his head and knocked himself out. I cleared the airway for him to breathe again. 2.Working in the metallurgy labs of Bristol Polytechnic and then Berkeley Nuclear Research Labs and on Nuclear power stations in the UK and Spain. 3. Diagnosed with Peripheral Neuropathy prior to MSAp.
Teen years football head trauma. Exposure to farm chemicals while keeping bees. 6 years before diagnosis single head trauma.
Multiple Sclerosis
Emergency nurse. Mother had Parkinson's
My husband had daily contact with toxic chemicals from being a car mechanic.
Had a fall and hit head, grew up in a sheep station was exposed to chemical. Grew up in western NSW many dust storms and nuclear testing was done in SA and dust storms carried to western NSW
Has severe Neurogenic Orthostatic Hypotension.
Had headaches Due to sinus infections and HBP. He worked in a manufacturing plant with solvents and other chemicals.
She grew up near Flint, Michigan and when she was a child the dust croppers would come through town flying low and spray pesticides to kill insects and mosquitos. She told me of how she and a lot of the kids would run behind the plane through the clouds of pesticides. They thought it was fun
Remote history of low back injury
She was initially diagnosed with Parkinson's disease in error.
Mother passed away early
Played football thru HS and college. Worked long house - 16 hour days. Trained with Marines at camp Le June (?)
Worked for years in an office that smelled of oil.
incorrectly diagnosed with PD in 2000
Stress built due to the financial issue of the family
He had a heart attack at age 34 and got medications for that until his death. 2 car accidents; broken nose, jaw. Stress at work for years; working till late.
Diagnosed with Parkinson's Disease in 2000. We kept questioning this because of signs, symptoms and rapid deterioration.
Bob played rugby for several years in his 20's. I know he had some black eyes and was knocked around. Unsure of actual concussions etc.
He had chronic uti problems most of his life including bladder stones.
Suffered with spondylosis of spine Mother suffered multiple strokes.
Work related stress - see above
Given his job he had exposure to diesel fuel and exhaust
My Dad was in a very bad car accident years prior to diagnoses.
Treated for 3 yrs for Parkinsons
Fell from a climbing frame as a child. Fell out of the loft and suffered concussion in 1990.
They first thought she had Parkinson's.
Suffered a stroke in 1986 (at the age of 33) possibly as a result of being hit in the head by a baseball bat (accidental).
His symptoms did not present strongly enough until 2013, but looking back we realized he did have symptoms we didn't realize were related to MSA as early as 2009. He had always had blood pressure that ran on the low end, but this dropped dangerously low during 2009-2016. He had a 5-bypass surgery in 2003, and his heart was in perfect condition after that time.
Bladder was not emptying properly and had to self catheterize for at least three years before diagnosis. Also handwriting began to deteriorate. Misdiagnosed with Parkinson's but poor response to medication led to MSA diagnosis
Head was beat on concrete by 1st husband. Stress from family life. Had complex regional pain syndrome (CRPS) II for 9 years prior to MSA symptoms starting.
He was a boxer for approx 4 years in late teens to early 20s
Sprayed insecticide in his teens
As a nurse with a husband that served in Nam, she was no stranger to stress. She had a cyst on her brain and had recurrent severe headaches throughout her life.
Had falls and injuries from bicycling accidents one accident resulting in major burns and the need for skin grafts. Had multiple surgeries for spinal stenosis.
Server in Philippines during WWll -had Head injury with shrapnel
Mom - Lewy Bodies
Family history of Parkinson's disease.
Louis fell off a truck when he was a kid and suffered a concussion. He suffered from severed headaches for many years prior to first symptoms. He was also exposed to very dangerous chemicals at work, such as CS2 and others. He was diagnosed with COPD and pulmonary fibrosis caused by asbestos from Pfizer.
She was in a stressful point in her life for many years following a divorce and left as a single mother. She had multiple bladder slings and mesh implants surgically placed in her 40s and 50s and started to notice loss of back muscle for which physical therapy did not help and rather made worse in the year before diagnosis. She also suffered bells palsey following the birth of her first child at age 25, and had varying issues with high and low blood pressure and cholestrol in her adult life.
Our son passed away in 2008, and she never recovered from that loss. She was highly stressed out over his death.
he was a football player and also a surfer. Had multiple concussions and broken collar bone. Worked extremely long hours. Was a caregiver to other sick family members. Was previously diagnosed as having OPCA 10 years prior to being diagnosed with MSA.
Diagnosed with Parkinsons disease
Exposed to agent orange while in the service; also broke his back in helicopter crash in Vietnam. He had PTSD since 1984 (from service in Vietnam)
My mom believes it started after a fall.
Born in Vietnam and was a young woman during Vietnam war. Her village was on the coast and thoughts of agent orange polluting the waters and therefore fish and vegetation...this has been a theory.
Related stress to work environment, appeared to handle stress well
No prior
Worked in flood housing for a while; cousin and aunt diagnosed with Parkinson’s
History of bypass surgery. Family history of heart attacks. Played high school football and basketball.
Father had Parkinson’s.
Parkinson's diagnosis
She had none of the above.
I don’t know all the details, I am only the mother in law that cared a lot
He was exposed to chemicals during a summer job, and also did not take all appropriate precautions when using malathion and other garden chemicals about 25-30 years ago.
Was misdiagnosed with MS and Parkinson’s before MSA was homed in as the actual diagnosis by Univ. of Michigan neurologist (Dr. Shakkottai).
None of these known.
diagnosed with PD in 2000
My mom had a cerebral aneurysm in 1982.
Diagnosed with spinal stenosis. Had laminectomy surgery - from which he was never the same.. Simply deteriorated after surgery..
Exposed to chemicals as part of his job, i.e. Freon, gases.
She worked as a field flagger in the early 80s for crop dusters then in the late 80s, 90s and early 20s worked for the state of Arizona in cotton fields that had been chemically treated for eradication of the boll weevil and white fly.
Father suffered from epilepsy and mother from schizophrenia
She suffered a broken leg and head injuries prior to her diagnosis
Pesticides and cement and lime
Did have a beam fall on him when he was in his 30,s but recovered after Physio.
Father played football at USC and then was stuntman .Parkinson's later in life. Daron played football from peewee to college. Six concussions he reported .i saw changes in him 24 years ago .small fade outs ,personality changes then six years ago physical changes .when he finally went to Movement Dr told Parkinson’s .That was three years ago I felt at that time it was MSA.I took him to different Dr who said MSA. He felt it was CTE evolving to MSA
Very stressful job which caused serious sleep difficulties for over a year
Kidney disease, orthostatic hypotension, night sweats and nightmares, surgery to repair an Abdominal Aortic Aneurysm, heart attack with stenting.
The reason for her to go to the hospital was because she had more and more problems with her balance and motor skills. Once she fell off her bike with me (her youngest child), because she lost her balance. This happened more often with other stuff, like dropping things.
Derek was first diagnosed with early onset dementia till consultant thought this was not just dementia
Didn't mark high level exposure of chemical/toxins, but growing up in Western PA near Pittsburgh there were a significant number of industrial plants known for the chemicals emitted in the area. As a result there was a significant amount of cancer including his sister. A Paternal Aunt had MS and his father had Normal Pressure Hydrocephalus. As a 5 year old he contracted Bulbar Polio, but had no residual symptoms from Polio.
Did experience anxiety throughout his life as did his mother
My mother knew something wasn't right she used to feel distant the 1st doctor told her if was in her head after 3 ys & change off doctor who told her straight away she haves Parkinson's! Then 10 years treated for Parkinson's getting worse no thing working diagnose msa the last 2 yrs bed bound
Familial history of Parkinson's
Before her MSA diagnosis, she was diagnosed with Parkinson’s.
Played hockey, football, and basketball in high school and college before they started using high tech protection. Milk fever after drinking unpasteurized milk while working at a dairy in middle school. Appendectomy after football injury. Quad bypass.
Head trauma from falling off building landing on his head when he was teenager. Told me something about spray toxins but cannot remember story. Was long before we were married.
No preexisting illness/condition.
Possible exposure to toxins in northern Maine from spraying of potato fields. First diagnosed with Parkinson's Disease. From initial diagnosis of PD to death was 7 years.
Dementia + Parkinsons Disease
Wayne played football as a child, don’t know if he had concussions or not
Herniated discs not related to trauma
Photographic developer
My brother hurt his neck at work and had 2 surgeries, but it had always hurt him.
My mum had previously been diagnosed with breast cancer and had to undergo several rounds of chemo and radiotherapy
1. Over 20 years prior fell off a loft ladder, hitting his head and knocked himself out. I cleared the airway for him to breathe again. 2.Working in the metallurgy labs of Bristol Polytechnic and then Berkeley Nuclear Research Labs and on Nuclear power stations in the UK and Spain. 3. Diagnosed with Peripheral Neuropathy prior to MSAp.
Teen years football head trauma. Exposure to farm chemicals while keeping bees. 6 years before diagnosis single head trauma.
Multiple Sclerosis
Emergency nurse. Mother had Parkinson's
My husband had daily contact with toxic chemicals from being a car mechanic.
Had a fall and hit head, grew up in a sheep station was exposed to chemical. Grew up in western NSW many dust storms and nuclear testing was done in SA and dust storms carried to western NSW
Has severe Neurogenic Orthostatic Hypotension.
Had headaches Due to sinus infections and HBP. He worked in a manufacturing plant with solvents and other chemicals.
She grew up near Flint, Michigan and when she was a child the dust croppers would come through town flying low and spray pesticides to kill insects and mosquitos. She told me of how she and a lot of the kids would run behind the plane through the clouds of pesticides. They thought it was fun
Remote history of low back injury
She was initially diagnosed with Parkinson's disease in error.
Mother passed away early
Played football thru HS and college. Worked long house - 16 hour days. Trained with Marines at camp Le June (?)
Worked for years in an office that smelled of oil.
incorrectly diagnosed with PD in 2000
Stress built due to the financial issue of the family
He had a heart attack at age 34 and got medications for that until his death. 2 car accidents; broken nose, jaw. Stress at work for years; working till late.
Diagnosed with Parkinson's Disease in 2000. We kept questioning this because of signs, symptoms and rapid deterioration.
Bob played rugby for several years in his 20's. I know he had some black eyes and was knocked around. Unsure of actual concussions etc.
He had chronic Uti problems most of his life including bladder stones.
Suffered with spondylosis of spine Mother suffered multiple strokes.
Work related stress - see above
Given his job he had exposure to diesel fuel and exhaust
My Dad was in a very bad car accident years prior to diagnoses.
Treated for 3 yrs for Parkinsons
Fell from a climbing frame as a child. Fell out of the loft and suffered concussion in 1990.
They first thought she had Parkinson's.
Suffered a stroke in 1986 (at the age of 33) possibly as a result of being hit in the head by a baseball bat (accidental).
His symptoms did not present strongly enough until 2013, but looking back we realized he did have symptoms we didn't realize were related to MSA as early as 2009. He had always had blood pressure that ran on the low end, but this dropped dangerously low during 2009-2016. He had a 5-bypass surgery in 2003, and his heart was in perfect condition after that time.
Bladder was not emptying properly and had to self catheterize for at least three years before diagnosis. Also handwriting began to deteriorate. Misdiagnosed with Parkinson's but poor response to medication led to MSA diagnosis
Head was beat on concrete by 1st husband. Stress from family life. Had complex regional pain syndrome (CRPS) II for 9 years prior to MSA symptoms starting.
He was a boxer for approx 4 years in late teens to early 20s
Sprayed insecticide in his teens
As a nurse with a husband that served in Nam, she was no stranger to stress. She had a cyst on her brain and had recurrent severe headaches throughout her life.
Had falls and injuries from bicycling accidents one accident resulting in major burns and the need for skin grafts. Had multiple surgeries for spinal stenosis.
Server in Philippines during WWll -had Head injury with shrapnel
Mom - Lewy Bodies
Family history of Parkinson's disease.
Louis fell off a truck when he was a kid and suffered a concussion. He suffered from severed headaches for many years prior to first symptoms. He was also exposed to very dangerous chemicals at work, such as CS2 and others. He was diagnosed with COPD and pulmonary fibrosis caused by asbestos from Pfizer.
She was in a stressful point in her life for many years following a divorce and left as a single mother. She had multiple bladder slings and mesh implants surgically placed in her 40s and 50s and started to notice loss of back muscle for which physical therapy did not help and rather made worse in the year before diagnosis. She also suffered bells palsey following the birth of her first child at age 25, and had varying issues with high and low blood pressure and cholesterol in her adult life.
Our son passed away in 2008, and she never recovered from that loss. She was highly stressed out over his death.
he was a football player and also a surfer. Had multiple concussions and broken collar bone. Worked extremely long hours. Was a caregiver to other sick family members. Was previously diagnosed as having OPCA 10 years prior to being diagnosed with MSA.
Diagnosed with Parkinsons disease
Exposed to agent orange while in the service; also broke his back in helicopter crash in Vietnam. He had PTSD since 1984 (from service in Vietnam)
My mom believes it started after a fall.
Born in Vietnam and was a young woman during Vietnam war. Her village was on the coast and thoughts of agent orange polluting the waters and therefore fish and vegetation...this has been a theory.
Related stress to work environment, appeared to handle stress well
No prior
Worked in flood housing for a while; cousin and aunt diagnosed with Parkinson’s
History of bypass surgery. Family history of heart attacks. Played high school football and basketball.
Father had Parkinson’s.
Parkinson's diagnosis
She had none of the above.
I don’t know all the details, I am only the mother in law that cared a lot
He was exposed to chemicals during a summer job, and also did not take all appropriate precautions when using malathion and other garden chemicals about 25-30 years ago.
Was misdiagnosed with MS and Parkinson’s before MSA was homed in as the actual diagnosis by Univ. of Michigan neurologist (Dr. Shakkottai).
None of these known.
diagnosed with PD in 2000
My mom had a cerebral aneurysm in 1982.
Diagnosed with spinal stenosis. Had laminectomy surgery - from which he was never the same.. Simply deteriorated after surgery..
Exposed to chemicals as part of his job, i.e. Freon, gases.
She worked as a field flagger in the early 80s for crop dusters then in the late 80s, 90s and early 20s worked for the state of Arizona in cotton fields that had been chemically treated for eradication of the boll weevil and white fly.
Father suffered from epilepsy and mother from schizophrenia
She suffered a broken leg and head injuries prior to her diagnosis
Pesticides and cement and lime
Did have a beam fall on him when he was in his 30,s but recovered after Physio.
Father played football at USC and then was stuntman .Parkinson's later in life. Daron played football from peewee to college. Six concussions he reported .i saw changes in him 24 years ago .small fade outs ,personality changes then six years ago physical changes .when he finally went to Movement Dr told Parkinson’s .That was three years ago I felt at that time it was MSA.I took him to different Dr who said MSA. He felt it was CTE evolving to MSA
Very stressful job which caused serious sleep difficulties for over a year
Kidney disease, orthostatic hypotension, night sweats and nightmares, surgery to repair an Abdominal Aortic Aneurysm, heart attack with stenting.
The reason for her to go to the hospital was because she had more and more problems with her balance and motor skills. Once she fell off her bike with me (her youngest child), because she lost her balance. This happened more often with other stuff, like dropping things.
Derek was first diagnosed with early onset dementia till consultant thought this was not just dementia
Didn't mark high level exposure of chemical/toxins, but growing up in Western PA near Pittsburgh there were a significant number of industrial plants known for the chemicals emitted in the area. As a result there was a significant amount of cancer including his sister. A Paternal Aunt had MS and his father had Normal Pressure Hydrocephalus. As a 5 year old he contracted Bulbar Polio, but had no residual symptoms from Polio.
Did experience anxiety throughout his life as did his mother
My mother knew something wasn't right she used to feel distant the 1st doctor told her if was in her head after 3 ys & change off doctor who told her straight away she haves Parkinson's! Then 10 years treated for Parkinson's getting worse no thing working diagnose msa the last 2 yrs bed bound
Familial history of Parkinson's
Before her MSA diagnosis, she was diagnosed with Parkinson’s.
Played hockey, football, and basketball in high school and college before they started using high tech protection. Milk fever after drinking unpasteurized milk while working at a dairy in middle school. Appendectomy after football injury. Quad bypass.
Head trauma from falling off building landing on his head when he was teenager. Told me something about spray toxins but cannot remember story. Was long before we were married.
No preexisting illness/condition.

Symptoms:

Please indicate all symptoms that he/she presented during his/her last year of life:

Neuropathy (numbness, tingling in extremities)

Excessive Neuro-Response (jumpy reflexes)

Difficulty Walking

153

Impaired Balance

150

Fainting

Unstable Blood Pressure

121

Unstable Blood Sugar

Dystonia (muscle spasms/ rigidity)

119

Neuro-Motor Freeze (temporarily unable move at all)

Myalgia (muscle pain)

Tremors in Extremities

Impaired Fine Motor Skills

143

Impaired Gross Motor Skills

115

Head Drooped Down or To One Side

120

Dry Eyes

Teary Eyes

Eye Fatigue

Optic Nerve Damage

Impaired Auditory Discrimination

Difficulty Swallowing- Aspirating Foods and Liquids

124

Difficulty Swallowing-Choking/Blockage

Excessive Coughing

Dry Mouth

Overly Moist Mouth

Difficulty Breathing

Difficulty Speaking

136

Puffiness Under the Skin

Digestive Disorder (diarrhea, constipation, etc.)

124

Excessive Gas/Bloating

Irregularity

Impaired Bowel Control

Impaired Bladder Control

135

Impotence

Chronic Fatigue

Insomnia

Impaired REM Sleep Cycle

Confused Thought/Impaired Cognition

Impaired Memory

Inappropriate Display of Emotions (crying, anger, etc. for no apparent reason)

Excessive Reaction to Stress

Chronic Headaches

Depression

Anxiety

Suicidal Ideation/Thoughts

Attempt(s) at Suicide

Chills/Sweating/Overheating

Rashes, Dry Skin, Itchiness

If 'Other', please specify:

During the last 6 to 9 months, my husband started having difficulty with some foods. He indicated some foods he previously ate were too salty, coffee tasted too strong, he had difficulty chewing meat and then other foods. He gradually ate less until he had no appetite at all. In his final weeks he ate very little; mostly pudding and applesauce. He was 245 lbs. when diagnosed and about 160 lbs. when he died.
In the year(s) before her death, my mother had a tracheostomy, PEG tube, ileostomy, bladder catheter, inability to speak, inability to walk, extreme difficulty with fine motor skills.
Tried Atropine drops for drooling. Worked well but caused severe hallucinations. Took them only for a couple days and restarted drooling again after that side effect passed. I must admit that he enjoyed the hallucinations!
Unable to sweat most of the time
None healing pressure sore
Musky odor
He had loss of testosterone. It caused him to be emotional.
He was completely bedridden because he was unable to walk. He was so bad that if he was up more than a 45 degree angle his blood pressure dropped so low he would pass out. We constantly would get readings of 40/20 for example. Because this was so sever we would not even get him up with a lift to sit in a recliner. This went on at this level for the last 6-8 months of his life
My Dad had very vivid dreams that he would yell and thrash the air.
Teeth broke off
Severe hallucinations and violent dreams
Suffered from edema in feet, lower legs and hands
Severe neuropathy, pain in legs and feet, “clawed” fingers on the hand
Did not sweat.
He was always cold. He was unable to empty his bladder completely early on, which led to at first intermittent self-cath and in the last year, a Foley.
Chronically running nose - especially when eating.
I'm sure he was suffering a little depression. Body would fall to the right.
slight degrees of some
Strider, Cardiac Arrest, Nausea, laryngeal rigidity, heyperflexion of limbs, episodic contractures
I may have missed some.
9 months before he died, Dad received a trach. It also was when he was diagnosed with Shy-Drager Syndrome. Dad stopped sweating about 2 years before he died.
recurring urinary infections.

Please indicate if any of the following caused his/her symptoms to worsen:

Exposure to heat

Stress

Fatigue/exertion

Lack of sleep

Diet

Medication

Loud noise

Bright or pulsing/flashing light

Confusion

Depression

If 'Other', please specify:

Anytime my husband caught a cold or had even minor medical procedures, his symptoms would worsen and he would decline.
UTIs were the most common cause of infection
Symptoms started after excessive stress working full time 80 hours a week and caregiving overnight.
Crowds or people moving quickly around him threw his balance off.
Socialising, panic attacks, fear of going out
He was first placed on Synamet, unsure of spelling. He did not respond well at all to it
The pain impacted all other symptoms.
Any change in routine appeared to cause amplification in some symptoms
Frequent UTIs
I don’t know those details
had a serious reaction to atropine...very confused and hallucinated while taking it for a few days but got back to normal soon after it was stopped
After eating his BP would always drop. In the middle stages (before we knew what he had) there were times we had to call emergency services while at a restaurant.

Please indicate if any of the following helped alleviate/reduce his/her symptoms:

Diet

Games, Puzzles, etc.

Exercise/Physical Activity

Physical Therapy/ Movement Therapy

Swallow Therapy

Accupuncture

Light Therapy

Speech Therapy

Supplements (please describe below)

Socialization

Medication

Massage

Please expand on your answer(s):

Exercise and physical therapy helped him keep his mobility but only for awhile. When he stopped seeing improvement he was not motivated to continue.
By utilizing multiple forms of therapy and keeping him social and active, my husband avoided hospitalization throughout the course of his disease.
Nothing seemed to help. Most content when watching tv
Midodrine 5mg for low blood pressure
The speed of the condition was so rapid that the above were tried and did help but only for a short time.
Watched tv continuously
Midodrine helped to assist with blood pressure drops for a period of time
As swallowing became more difficult a feeding peg was used
High Sodium, lost liquids. Very Short periods of standing or walking .
Some Parkinson’s meds
When she was fed well balanced nutritional food, I'd notice an overall more upbeat woman with more energy. The exercise, even as little as we could do, helped boost her moral and made her feel as if she was conquering a bit of her disease. It made her feel strong and in control, if even just for a short time. And socialization definitely helped to keep her feeling less depressed. Also when she was with people she had less tremors, spoke more clearly and with a stronger voice, and did better with swallowing and not choking. Being around friends perked her spirits, although she would be extremely tired by the time company would leave.
Calm- supplement which helped tremors
She gained about 80-90 lbs if eating a lot of sugar products.
No treatment that can really improve his condition
Massage therapy
Used to slur words and spoke quietly. Speech therapy taught him to speak slowly and carefully to get his words out. He used to enjoy doing puzzles but couldn't concentrate for long. Used to watch tv.
He took dopamine. It didn’t make a difference in the diseases progress. He had 2 brain surgeries by a known neurologist that claimed MSA didn’t exist and claimed Kenny had Parkinson’s. They were done 3 months apart. The second one expedited his death and removed the quality of life. We also tried chelation and biometric oxygen tank. In the last months I took him to Lima Linda Hospital and without saying what his diagnosis was I asked the doctor what Kenny had. He said MSA. We already knew but wanted a final confirmation.
We did massage therapy for a short amount of time. and he responded well at first. We stopped after a month or so because he tired so easily after the massages
due to his condition, he was in a wheelchair the last 2 years of his life. i made sure he either swam or walked in the water doing laps at least twice a week, usually every other day. every morning he had a smoothie consisting of fresh fruit along with either cereal or eggs
I made a dried fruit paste that helped with constipation. He also took MiraLAX.
Nothing helped. It just goes downhill day after day.
We had regular phone appointments with Dr. Laurie Mischley in Seattle, who prescribed a regimen of glutathione spray. He also took Sinemet which seemed to help him even though we had read that MSA patients usually do not respond to this medication. He suffered from edema in both lower legs, but because of his low blood pressure, he could not take diuretics. His Rx/supplements included Vitamin D, B multi, Omega 3 fish oil, alpha lipoic acid, CoQ 10, vitamin c, L-carnitine, MCT, probiotic, citicholine, resveratrol, probiotic, NAC, magnesium, D-mannose; pyridostigmine, sinemet, crestor, plavix, ranitidine, myrbetriq, zoloft. At one time he was prescribed avodart.
She used probiotics for 6 months to help with constipation, socialization was a help as was medical marijuana for the short period of time she used it. Also had fentanyl, morphine and methadone.
Nothing heiped
Temporarily helped symptoms. But not continually.
Also laughter, watching funny videos
Nutritional supplements
Building up her muscles seemed to help
Not much of anything helped her symptoms, however she felt much better when massaging her muscles.
????
Swimming pool therapy helped.
This relaxed her got rid of the anxiety, made her thirsty so she drank more,made her hungry do she ate and it made her overall well being so much more pleasant.
Would feel drained after any physical therapy
Having friends visit was important. Physio everyday to keep him motivated.
Nothing helped.
Anti depressants helped with mood
dysphagia (soft) diet helped with issues of swallowing
Part of her daily care regime included manual massage of neck, shoulders, & extremities along with application of moisturizerizing lotions.
For diet he would eat bacon and drink coffee, both forbidden previously due to his heart surgery. But the two seemed to help his BP. For awhile medication (midrodine) helped. But at the end, that really didn't help much.
Meds helped for awhile when he lost control of bladder. Also meds to help with constipation. Wasn' t convinced meds helped with MSA as it progressed so rapidly, but looking back feel he had symptoms for years prior which doctors told him was arthritis.

Living Conditions and Care:

Did he/she receive adequate support to live comfortably during his/her struggle with MSA?156 responses

yes

135

If the individual did not receive adequate support, please indicate what support was lacking:

Individual had no caregiver

Caregiver was unable to meet the individual's needs

Individual/caregiver lacked financial resources needed for adequate care

Individual/caregiver lacked access to knowledgeable medical care providers

Individual/caregiver lived at a great distance from medical care/support

individual refuses/refused assistance

Individual/caregiver lacked access to knowledgeable medical care providers

Lack of support due to limited local resources

If 'Other', please state:

As Michael's wife I was able to care for him until a few months before he died. We had little financial support. Fortunately we had savings and were able to use this to make life more comfortable. It was a continual battle to get the recognition that the condition moved fast. He did have support in provision of equipment.
She was cared for by her granddaughter husband and daughter
It's has become very difficult, with no one to help, do all the caregiving that is needed.
Dr's in educated on MSA
Lack of social contacts.
No support was offered post diagnosis. Family was left to research disease themselves and contact Multiple System Atrophy Trust in the UK who were great. Diagnosis was so late in the day that there wasn't enough time to put proper support in place.
Care given by family
I was his primary caregiver, but without full knowledge of his disease, i was pretty much flying blind. my concern was to make him as comfortable as possible with limited resources
Took almost 7 years of symptoms get a diagnosis. His debt was so much he couldn’t afford supplemental care, better diet, etc.
Primary caregiver in denial, patient protecting her husband!
Difficult to get in home care while I was at work, financially draining. Although I would have preferred being home with Rick i needed to work to maintain healthcare.
In the last stages of her MSA she was well cared for in a home

Did MSA created financial hardship for the caregiver, him/her and the family?

yes

If 'Yes', please expand on your answer:

In order to keep my husband at home, we remodeled our bathroom, put new flooring in our home and removed all carpeting to make it easier for him to use his walker, bought an adjustable bed, bought wheelchair ramps and car carrier, and a wheelchair. We purchased bed rails, a taller toilet and hand rails. We even bought a new car that was easier for him to get in and out of. We were forced to taje out multiple loans to pay for much of this, to the tune of about $75,000.
Disease forced retirement.
We had savings. My biggest worry was when after being in hospital for six weeks we were told he needed care of 4 daily visits from 2 carers.This was provided free for 6 weeks. After this I was quoted thousands of pound that would have rapidly reduced our savings. Three times Michael was assessed for 'Continuing Healthcare Financial Support.' We finally got the news that he would get the support on the day he died. This had caused me huge distress. I tried to keep that from my husband.
She could no longer work
He was the primary source of income so I (his wife) could stay home with our children. We still had children in school and I was unable to return to work full time as I was his primary caregiver
Loss of benefit and salary.
Cost of home care and bathroom renovations and epuioment walker wheelchair bed rail etc
Medical expenses - Hospital stays & Emergency visits Medications Cost of caregiver and then group home Adaptive needs such as stability poles, wheelchairs, walkers, incontinence care needs...
Expense of supplies needed and not being able to hire outside help..
Lack of. Income
Lost all investments and retirement funds and saving to medical bills and costs. After 10 years care at home he was placed in a skilled nursing home- trach care- at $12,000 per month costs. Medicaid was not approved until 6 months after qualifying. Medicaid required that both husband and wife liquidate their assists to qualify.
From 2 salaries to 1.
Had 2 children still in school and I ( his wife) had to stay home to care for him
Somehow no, but my mum has to work hard to support for my family
I had to take money out of our retirement funds (IRA), but then was required to also pay a penalty on it, due to early withdrawal, since he was not of retirement age.
Had to buy own wheelchair and other equipment. Was on a pension so little money coming in.
My husband could no longer work. I quit my job and took care of him at home. He passed 2 1/2 years after diagnosis. His insurance had lapsed due to him not being able to work. We sold our property so we could live. We were charged $800 per months for medical coverage because we had owned property.
At first trips back and forth to appointments were numerous and expensive due to travel distances. The vitamins, supplements, creams, diapers, special foods, bed pads, Cather care items and numerous other needs were not covered by his insurance. Their life savings was depleted to provide the level of care he needed.
Due to being retirement age. Lack of access to mobility vehicles is an issue in that age though.
Health care broke us financially.
Well yes, he couldn't work and mom took care of dad at home. The VA hospital wasn't very helpful, as if his MSA was not a problem .
The need for medical equipment reduced the budget and numerous trips to the ER added to the hardship.
Only as pertaining to his medications and the many doctors' visits.
Had to give up work and I had to go part time then stop work to care for my husband
Took all of our savings and for a year+ had a family help us with some bills.
As her daughter and caregiver, I could no longer work. My husband had to hire to replace me in our small business.
So many hospital stays and ambulance rides led to great amount of debt. And assisted living facility at $5k a month used up his entire monthly pension.
Loss of independence. A great deal of savings and income was spent on caregiving.
Could not work
She had many thousands in savings at the time of diagnosis from the sale of her home in 2004. Before she was able to get on state aide we had to send down her savings on medical equipment and repairs to make the home ready for the latter stages of progression. By the time we were able to finally get her aporoved for disability sje lived a mere turee months. she had literally nothing left for payments to specialized care leaving a decent sum of money owed to the nursing facility and doctors. Which was paid out of her life insurance.
We had to sell our home of 43 years to get into a home better suited for her care, and easier for me, her husband and caregiver, to take care of. Unfortunately, we had to sell as a short sale. There were also the costs to make the home suitable, I.e., grab bars, ramps, shower Modification, bed modifications
All costs for assisted skilled and nursing care were out of pocket expenses.
Our son had to drop out of college temporarily to care for his father and his final year of life.
She was in a nursing home the last few months of life, which was insanely expensive, close to $10,000/month.
lost all resources. Had to go on Medicaid plan due to age and not qualifying for Medicare yet. Medical services were limited due to Medicaid limitations. Cost of home care was extraordinary and unaffordable
Patient was primary bread winner of household.
Medical expenses
Medicaid did not help with showering facilities and suggested sponge bath. We bought special wheelchair that enabled her to recline when out . Invested in several ways to get her into the car.
She was unable to get full disability benefits because it was determined to be an underlying medical issue
$2000 or more a month to have someone here while I was at work
Mom was already disabled and unable to work. He was her caregiver. He became unable to work and care for Mom.
I was her only child/caregiver, having to pay out of pocket for other caregivers to provide care while I worked, because she didn't qualify for help. Having to pay out of pocket for medications and exams, etc. what insurance and Medicare wouldn't pay.
It was extremely difficult obtaining any Medicare/ Medicade / social security assistance, care facility acceptances, home health care, etc. because of her relatively young age and no health insurance.
Worried about if her funds would run out and she would have to die in a nursing home. Brenda’s fear didn’t come true...she peacefully passed away with her loved ones (and a couple of her trusted caregivers) by her side in her home:)
Mom was on Medicare. Lots of out of pocket expense for her and us kids. We tried taking care of her at her home but everyone worked and it was very hard to coordinate schedules. We ended up having her move in with one of us with all 5 of us contributing for her care along with some other family members and we had Hospice step in to help.
As his caregiver/ wife I was exhausted at times and could not afford someone to help me!
Meds and sitters exhausted funds.
She moved in with me and I had to work nights someone was home 24/7 then i would have to call off when she had Dr appointments, we did a study through the ALS foundation and eventually I had to take FMLA and worked 1 day a week so I lost a lot of our family income.
Ended up having to go into government funded care that lacked the knowledge of MSA and the time to spend properly caring for them - even though family tried to teach the carers certain things and spend as much time with her as possible.
The cost of a nursing home and I was diagnosed with Stage 2 breast cancer during t he last year of his life.
But her husband left her as he couldn’t cope with her illness which only added to her suffering
Because I gave up work to look after my husband so had to try and live of benefits which was very hard
Loss of income
The amount of medical equipment needed was intense. Also there was a 6 month gap where her insurance wouldn’t pay for a caregiver so I volunteered and was her primary caregiver without state or federal assistance.
My husband was primary wage earner. We still had a young child at home to support
had to pay taxi to and from every appointment
Self employed....unable to continue
fortunately Canada disability Pension and AISH (Alta Income for the Severely Handicapped) provided some income, albeit $1600/month. No funds for a caregiver, assisted living or neurological visits.
Because Dad was a proud man he did not go on disability until he could hardly walk. As a result, he did not have medical coverage at a time he needed it most. Fortunately, between his disability, Mom's disability, and my income we were able to make it work, mostly.
Because of the length of disease, savings was used and gone. Had to go to hospital and then to nursing home in last 7 mths because was unable stay at home (He wasn't able to move and to heavy to lift) Had help at home prior to this.
The various drugs prescribed (levodopa/carbidopa, pramipexol, etc.) were most times unavailable at the National Health System (IMSS/ISSSTE) in Mexico. Purchasing them with family income was the only option.

If he/she MSA was covered by private or government-sponsored insurance, please state the level of satisfaction with regards to MSA-related care:

Very satisfied

Satisfied overall

Dissatisfied overall

Very dissatisfied

You may expand your answer:

We had excellent care from our medical group doctors.
Medical professionals in area had little or no knowledge if MSA
Msa is a rare disease in Brazil. All health staff of her insurance just don't know anything about it. I was the caregiver and I had to study all terapies to instruct them.
Va atlanta really sad for a veteran.
No insurance in the UK
Local medical professionals unfamiliar with MSA
MSA is so rare that none of his doctors had heard of it. We tried to use the VA but their doctors were very rude and had no clue what MSA was and tried to give him medicine that would have been fatal if he had taken it due to other meds he was on.
Alot of out of pocket expenses or not covered.
Eventually Medicare and a supplement covered most.
Family doctor had very little knowledge of MSA and there was no contact with the family doctor in the last three years of life. There was really limited input from the family doctor although initial diagnosis was made by the Mayo clinic. But they were at a great distance and she didn't return to the Mayo in the last 4 years.
Once she was diagnosed we weren't given any real information about MSA. We had to dig for our own information. No doctors were experienced in our area.
Didn’t qualify
Doctors did not know what MSA is.
Insurance was over 1,000 a month.
Prior to diagnosis he only saw a neurologist twice, one of whom diagnosed MSA.The appointments were often cancelled or changed at the last minute. No support was received in terms of state benefits. No support was provided post diagnosis. Both he and the family were abandoned.
The cost of having Medical/Medicare was extensive. We didn’t receive coverage for quite awhile. We went to Mexico for the chelation and oxygen tank. We paid cash. His expensive antibiotics were still very expensive.
My Dad chose to enter a nursing home the last year and a half of his life. I was at the nursing home every other day with out fail to make sure that every person who came in contact with my Dad new about his disease. Some people wanted to know about it and some just didn't care.
my father was on medicare as well as tricare from the military. thankfully, between the two, he was 100% covered for all medical issues
No insurance
They did the best they could, however, not all doctors are/were familiar with MSA so it was challenging at best.
We had Medicare Complete/United Healthcare as our insurance, with no difficulty going between our approved doctors and the University of Utah.
I only wish more providers were experienced with this disease. I became the teacher to most providers other than the neurologist.
It took us far too long to get her qualified for disibilty. She had been out of work for two years before they would aporove her then she only lived another three months past approval.
Our health insurance covered hospice at home, although we had to pay for part-time private nursing care out of our savings.
Medicaid would not pay for any rehab type services as it was seen as not helping cure the disease. When a disease has no cure, its cruel to limit patient hope and care because medicaid see it as a waste. Heartbreaking.
Private insurance through wife’s employer but doctors were pretty clueless regarding msa.
Did not understand the disease though we explained it and printed material to no avail.
Canada's good health ins plan helped, but MSA was unknown and some financial aid not available.
I’m not sure
Rick benefited greatly with physical therapy but visits limited also speech therapy. So frustrating fighting for care to maintain his ability to stay as good as possible for as long as possible. That was always our goal
Since he had to give up working he lost his health insurance. He never made the 2 years on disability mark for Medicare. Medicaid was a maze and some months we could get him qualified, but most not. Between his disability and Mom's he could not afford medications. So I paid out of pocket. Doctor and hospital bills mounted. He refinanced the home he and Mom had almost paid off to pay down some medical bills. Today, I'm still paying off that mortgage.
When state help was obtained, it was still slow and unresponsive to her needs. Too little too late. When a move to a different state was needed for her care, the entire application process had to be started over with a new 6 month waiting period with no coverage again because Utah And Illinois couldn’t cooperate with each other.
David was covered by Medicare. He had a palliative care home health care team for the final six months, and so far all of those services have been covered, though I may not have received all billings.
We started out very confused and frustrated. No one could tell us exactly what was wrong with her. We were lucky that during an emergency room visit we came across a fantastic young Dr and we finally got our diagnosis. More time and money needs spent on research on MSA.
Long term care policy
Medical staff not knowledgeable enough
No insurance cover
Once the kinks were worked out insurance helped a lot.
No coverage for any help with caregiving
Client was unable to receive pain control until hospice care was ordered less than 4 months prior to death.
She had difficulty dealing with these providers, but I think this was mostly because of her impaired cognition.
Since this was before online submission, in order to have him qualify for state medicaid I would have to take his information monthly to the medicaid office. Unfortunately, since I was either doing caregiver duties or working, this was, most months, difficult to do. He would have qualified for free medical care at the county free hospital, however, it was quite a distance and no guarantee he would be seen. Also, he really could not be up/sitting that long. He didn't have coverage for medications so I covered those each month.
No insurance
Most prescriptions were issued when there was little or no drug supply, besides the government health service required her to attend regular follow-up appointments, which most times was not possible for since her limited/inexistent mobility was the main constraint.

Please indicate any needed services/assistance that the individual/family was unable to access due to financial hardship or lack of medical insurance

Regular Neurological Care/Assessment

Regular General Health Care/Screening/Services

Medication

Home Health Care/Assistance

Assisted Living Facility Care

Mental Health Therapy/Counseling

Occupational Therapy

Physical/Movement Therapy

Speech Therapy

Swallowing Assessment/Therapy-Choking Prevention

Vision Assessment/Care

Dental Care

Wheelchair/Mobility Devices

Hospital/Specialized Bed

Dietary Needs/Supplements

Diapers, Catheters and Related Items

Diapers

If 'Other', please list:

System different in the UK
Because we had gotten a walker with seat, in last five years, we were unable to get Medicare to pay for wheel chair.
Medicaid limited what they would pay for
My father would not be approved for assisted or long term facility care because he had "too many assets". He had a home, some savings and a couple pieces of land. He lived in a very small town and his nearest doctor was a two hour drive for him. This was expensive but got to be so difficult physically he stopped going.
See above explaination
My house was only 1000 square feet and I could barely fit the wheelchair through the doorways. I also had to lift her into the tub and climb halfway in behind her to help her sit up and bath. I know no one would be able to fix that but it was a horribly tough situation to handle alone. Home health nurses would not take on the job of helping because of the small living situation with no room for a lift. I had to climb on the bed to lift her up higher.
I had wished that his insurance or financial ability could have allowed for alternative therapies like acupuncture, chiropractic care, etc.
We asked about arrangement to donate his brain specifically for MSA research but were told that "it was complicated" so decided to donate his entire set of remains for research. Our hospice was affiliated with uniform services health university at Bethesda, so we donated his body to them.
If approved, it was limited time only and they would stop because she wouldn't improve. With MSA, they don't improve but it is very important to help the patient.
All appointments had to be 6 months apart as we didn't have insurance so it was all government funded. this led to problems as we had to wait long periods of times even if we needed to see a specialist. We could see a doctor regularly but they didn't seem really have any knowledge of MSA symptoms or how to help.
Everything covered on the National Health Service
Most things we figured out a way to make happen. It wasn't always pretty but providence smiled some days.
Had lots of help from social development and Extra Mural nurses but because we lived in rural area was unable to have homecare at the end for round the clock care. I could not lift or even roll him over.

Please rate the overall quality of medical care received by the individual in the last 12 months of his/her life:157 responses

Very good: MSA was well understood by medical/treatment staff

Good: MSA was not always well understood, but medical/treatment staff made the effort to learn

Fair: MSA was not really understood by medical/treatment staff, but care was adequate

Poor: MSA was not really understood by medical/treatment staff; care reflected a lack of knowledge

Very poor: MSA was seldom discussed by medical/treatment staff at any level; care was generally poor

Please feel free to expand on your answer

Wayne was only diagnosed with MSA 2 1/2 weeks prior to his passing. He had been diagnosed with Parkinson’s
His wife was his primary care giver and it was his decision not to have much medical intervention. When he became unable to leave a chair or bed Hospice care was brought in and he was made comfortable with very little medical intervention or folllow up from physicians.
To ensure the care was good I had to be very proactive. When my husband was in hospital I visited every day,all day. I had to explain the condition to most of the staff. Also needed to watch the medication given as mistakes were made.We had an excellent physiotherapist and a 'Community Matron' who tried to coordinate the care at home.The local GP doctors were totally lacking in knowing how to help. The UK MSA Trust charity tried to support but has low financial funds.
Unfortunately as her speech was badly impaired any hospital stat was a nightmare as staff couldn't understand her and didn't take the time to find out
No one knows about MSA as it so rare Australia is so focused on Cancer patients
I had to educate doctors and hospice team about MSA. His death certificates were even wrong!
his gp was more helpful and supportive than his neurologist
His neurologist was awesome, he survived as long as he did because of her diligence
He had so much difficulty with his longs at the end; to much slime he could not swallow away. In the hospital they could not help HIM anymore they said.
was essentially dismissed by neurologist when MSA diagnosis was finally conceded. Neurologist did not accept brain donation. Personal physician was phenomenal with her care and treatment. Very, very supportive and accommodating.
After passing a complaint through afterwards it was discovered that the community nurses apparently didn't know what condition was. Thought she had Parkinson's. this was despite information booklets always being given.
Diagnosis was not made until 6 weeks prior to death. Appointments constantly cancelled. Neurologists not knowledgeable at all about MSA. Registrar looked up symptoms of MSA on google and then announced to Ray that he had MSA and to enjoy what time he had left! Informing Ray of the prognosis was handled extremely poorly, leaving him a very frightened man who gave up. The family complained to the NHS Trust about the poor care given.
The neurologist that did the unnecessary surgeries was a poor excuse for a doctor. He didn’t even research MSA as a disease. He was released from the hospital the next day after both brain surgeries and after the second one he fell more and needed to recover. I checked him into Lima Linda Rehab where he stayed for a month. When I brought him home I had the hospital bed and a reclining wheelchair waiting. He passed 2 months later.
Dads primary care physician was excellent. He initially had never heard of MSA but he studied what little he could find about it. However every time Dad was in the hospital, emergency room, or met with a new doctor we found ourselves having to educate the care providers over and over again!
Hospital physicians and staff knew nothing of this disease. Really did not listen to my explanations. Only exception of course was movement disorder doctor. Fought like the dickens to have death certificate ammended to MSA as COD. It was filed as Parkinson's.
while he was in the hospital, there wasnt much the medical staff could do, except to try and keep him comfortable. his first stint at a rehab hospital was awful. their way of dealing with things was to over-medicate him.we then learned which rehab hospitals to avoid
Our neurologist at the U of U gave him excellent care. We were so grateful to be under her watchful eye.
I was primary caregiver so she received quality care from me. Hospice the last 6 months was at best fair; had to teach them about MSA and they did not get meds to us on a timely basis.
The diagnosis was unknown and unrecognizable by most professionals. Most did not even bother to learn about it.
Patient & Caregiver did not want help as caregiver in denial.
Her DR was supposed to have been a leader in MSA diagnoses , but failed to recognize her symptoms. She was diagnosed with Parkinson's, but the first maker that anything was wrong with the diagnoses was that the medications for Parkinson's were not effective.
Quality of care reasonably good, but without a strong advocate this might not have been case. Each step of journey I Had to be alert to changes and share my basic MSA knowledge with staff. Last few yrs my husband was in care facility due to declining rapidly. Lived nearby and was with me every day.
She was never actually diagnosed with MSA and it was never discussed. We were only told it was celebellar atrophy
Rick was in Hospice care at home for the last year of his life
Especially emergency room doctors. Whenever Dad was in the ER I would give the new docs (we have local teaching hospitals - good for latest treatments but bad for always rotating docs) a short tutorial on MSA patient management.
Doctors and medical staff don't know about MSA and how different care is for an MSA patient for each symptom.
Poor to fair in the beginning but with the right Dr that understood MSA and it's symptoms we were told what to expect. She deteriorated rapidly and her Preferred Care Dr was very good at accessing her.
neurologist was a PD specialist and effectively dismissed patient after MSA diagnosis Family doctor was extremely helpful and supportive of the patient/family - even came to the home for visit.
We had to see multiple providers who did not seem to make any effort to coordinate care. For example, we had a neurologist who prescribed drugs for the Parkinson’s symptoms but said she could not address the blood pressure issues. We saw a cardiologist for the blood pressure issues, but he did not know much about MSA. We also saw multiple therapist for p/t but none of them knew anything about MSA and treated my mom like she was recovering from a stroke- rather than helping her cope with a degenerative disease.
Excellent care was limited by distance.
My husband was more a hindrance to getting care as he was in deep denial and apathetic about care . It was a huge burden on me . The Drs and then Hospice were wonderful . Where I felt there was a HUGE breakdown in support was when I reached out to ALS support here and asked if I would be able to attend the caregiver group . They told me NO he did not have ALS .At a later date our social worker reached out to them to ask if we could borrow a communication device to see if it would work if so I would purchase one .Again told NO .
Hospice helped more than I could have realized. My husband had not wanted it because he knew it meant he wasn’t going to improve. He held out hope for a breakthrough cure.
We were fortunate that the 1st Neurologist we went to correctly diagnosed his MSA. We were able to find without too much trouble a Urogologist who understood MSA. The 1st 2 had no idea, and thus it was a frustrating waste of time dealing with them. We had a very frustrating experience with ER doctors who didn't believe how he'd react to laying flat and the subsequent medication given him to lower his BP. Eventually they realized I knew what i was talking about.
Good thing I am able to manage on my own---many can't
Hospice staff had never had a client with MSA previously. Even though I suggested they research & read, they deferred to allowing me ( her sister & a retired BSN) to trouble shoot, educate staff, & make all decisions regarding manifestations of symptoms. When witnessing "small episodes" they became startled, intimidated & sought my help & input r/t symptoms.
Elizabeth was extremely intelligent and analytical, so most of the understanding of her disease was provided by her to her physicians.
Whenever Dad went to the emergency room we had to educate the ER staff. Early on, since Dad had low BP, they would give him an IV full open to raise his BP. The first time they did this Dad ended up with fluid on his lungs because he was already well hydrated. This resulted in a week in the hospital. After that we were careful to watch the ER staff and educate where needed. Since the local hospital was a teaching hospital, they would ask Dad if they could bring the med students by to talk with him and he always agreed. He hoped the exposure they had would help the next person not go so long without a diagnosis.
There is no state/country record, history and well extended knowledge about MSA, since my mother was diagnosed 4 years after her first symptoms appeared. Doctors (from Psychologists to Psychiatrists and even Orthopedists) lacked accurate diagnostic frames or testing, until the FOURTH Neurologist we consulted prescribed thorough MRI scans, Lewy body search, etc.

Transition Issues

Please indicate the cause of his/her death

Respiratory failure (stopped breathing)

Respiratory infection (e.g.: pneumonia)

Respiratory blockage (choking, obstruction)

Heart attack

Stroke

Other complications from blood clot(s)

Digestive system failure (unable to digest food)

Digestive system blockage

Head injury due to fall

Other injury due to fall

Septicemia

Sepsis, heart stopped, constipation, septic shock

Not 100% sure

If 'other', please state:

Aspiration pneumonia
Pulmonary embolism
Sepsis was mentioned nut not recorded.
We could not awaken him one morning. His oxygen level and BP just continued to drop.
elected to stop eating 4 days prior to death
UTI infection to Sepsis
Was having wild tremors, IV was administered. He never spoke or responded for two weeks prior to death. His body was unable to fight any longer.
Major organs began to fail.
His neurologist felt he suffered a brain bleed which in turn hit the brain stem and stopped all functions. He literally "dropped dead" after no other symptoms.
Further complications such as epilepsy brain too fragile to recover
Conscious decision to go to palliative care due to inability to eat, take medications, and pain
Not sure. Donated brain for research.?
Blood pressure was extremely low one morning, and by the afternoon her kidneys were shutting down. Diet definitely played a part in it though, she could barely eat anymore and refused a feeding tube.
He kept getting UTIs snd I think that ultimately led to his death
She fainted due to drop in blood pressure and never woke up. Cause of death was never determined
Primary - heart disease. Secondary - neurological disease.
also appetite declined unable to eat anything a week prior to death. gave her water through a straw or moisture stick in mouth
His body functions slowly gave out until he passed!
Arizona
Undetermined
Everything just seem to slow down until his body stopped
NSW
Slipped away in sleep
LANARKSHIRE
Multiple System infection (e.g. eyes, lungs, bladder)
The disease and couldn't eat.actually not sure. Had a spell if confusion the week before.Seem to recover , than another the following friday. He told me about it after but Saturday wasn't resposive and on Sunday passed away
Weakend immune system due to urinary infection.

Did he/she made arrangements to donate his/her brain for research?

118

Yes

Did the individual/family receive adequate information and counseling to assist in the decision?

Yes

Had he/she participated in any type of clinical research related to Multiple System Atrophy?

132

yes

If 'yes', please state the location and the purpose of the research

Mayo Clinic Rochester but was not selected for trial
He offered help to John Radcliffe Hospital Oxford but was unable to reach the hospital regularly and couldn't get onto a bed unaided, so was refusd. Also offered himself to Bristol Souhmead Hospital. There was no take up of the offer.
Wanted to and was interviewed for stem cell study at Mayo Rochester Mn but not accepted
No but always offered if there was any in Australia
NYU, testing organ transplant in hopes it would help.
NYU rifampimin study
Astra Zenica trial AZD3241
mayo brain bank, florida, cause of death confirmation
New experiment drug Dallas tx Bone marrow. Germany
Hospitals in Leuven (Belgium) and Maatstricht (Netherands) and Germany.
He was in a study at the Parkinson's Institute in Sunnyvale CA. I can't remember what the study was for exactly
Lima Linda rehab staff wasn’t familiar with MSA. They asked for information. I received a cd and other information from Vera and took it to the doctors. They were very caring.
Just the brain donation to the Mayo Clinic in Jacksonville,Florida.
Was being considered, however he was too far advanced
Through the University of Utah he signed on anonymously for some type of research.
Movement disorder specialists were carrying out research by plotting his condition and various stages of MSA
Gainesville, Florida
One in Edinburgh. Others possibly but I don't know any details.
Tried Mayo Clinic but was denied.
Was examined twice at the national institutes of health movement disorders clinic.
Provincial surveys we participated in, but very limited options.
University of Florida in Gainesville, Doctor McFarland.
NYC; Astra-Zeneca trial of a drug in conjunction with PET scans
Dr. Shakkottai at the University of Michigan
In Arizona the ALS foundation was checking to see if a particular protein would help her.
Astra Zenica drug trial
Never could find any he qualified for
Spent a week at Vanderbilt Hospital in their Dysautonomic Unit.
Even though I put "no" I'll expand a bit. We actually tried to get him to NIH were they were doing some research but were told he was too advanced.

Did he/she support the concept of a "patient's right to die?"

yes

109

Please feel free to expand on your answer:30 responses

He had spoken once to his GP about the medically assisted dying situation.
Not sure
Always said he wanted 'DO NOT RESUSCITATE tatooed on his forehead! As movement became more difficult he said he had lost his chance to get to Dignitas.
I’m not sure. Never discussed
She wanted so much to live
I do not know 100% but he trusted God to take him in his time.
She very much wanted to be able to end her life and talked about it multiple times. We explained to her that we could not assist her with that in any way. In Michigan it is against the law and we would not put ourselves in that situation
D n r.
Assisted suicide was not yet approved in Canada, but months before his passing, my husband told me that if we were richer, that he would have wanted to go where it was legal so that he could get out of that pain and nightmare that is MSA.
Not really know if he agree with this
Not sure.
We never discussed this
Don't know as no time to consider and symptons very advanced after diagnosis made
My Dad fully supported patients right to die.
He did not want to be intubated or have a stomach tube and requested DNR.
My husband offered to take part in research but he was unable to get on a couch on his own and the offer was refused. Also his condition worsened rapidly making it difficult to travel to where research took place.
He did not want or receive any heroic measures to prolong his life.
This was not discussed.
She always said "where there is life there is a reason yo live."
Not if this means euthanasia
expressed a desire to not be revived, to not have treatment that prolonged life when there was no prospect of quality of life
She denied all outside intervention stating she knew she would not see a cure for her disease because it was hugky unknown and did not want to prolong her families suffering from watchung her die a slow painful stone death. Signed a dnr the week after her diagnosis, and told us when it her time to go to let her go.
He believed that he should be allowed to choose his own ending, and prayed for his early demise because he did not want to live with MSA any longer.
I am unsure.
My dad was a very religious man, but in saying that he didn't judge other peoples choices.
After 13 and a half years fithing, my mother wanted euthanasia. After having just started the process, she died. But luckely, she partly died the way she wanted; with her two daughters at her bedside.
The last 6 months of his life he was a Hospice patient. Approximately 3 weeks before his death they started giving him Morphine.
Advance directives were completed at my urging prior to total decline in functioning. DNR was signed in advance, & funeral arrangement (i.e. cremation) were made while client was not under any extraordinary effects of medications. Family members assisted as needed.
We never discussed it but he made it clear that if he was to die, not to be resuscitated
She voiced her desire not to continue with any treatment as her symptoms worsened within the first three years. She lost speech capacity within the first two years.
Thoughts and Memories
Please share any observations that might be helpful to others coping with Multiple System Atrophy:97 responses
Your life changes so quickly. Requires a great deal of patience while waiting for a diagnosis.
What surprised us most about living with MSA was that the decline wasn't steady. My husband would decline and then reach a plateau and stay relatively stable, sometimes for months. Then, sometimes without warning, he would begin to decline. We never knew how long ir how far the decline would last, and then he'd hit another plateau. His final decline was unstoppable because he could no longer eat enough to sustain himself. Our biggest lesson: travel, do what you can while you can.
MSA online support group helpful. If possible in person support better. Always ask questions. Caregiver support essential.
Access to care in the home would have been so much better than nursing homes and hospitals.
The respiratory system becomes very fragile , it's recommended to give an special attention to it since the begging with respiratory therapy.
Care givers must have endless patience and empathy for the person suffering. The patient should cling to every moment they are able to do something, regardless of how small.
Horrible to watch.
My brother chose to not get a feeding tube or trach. It was an uphill battle,but he loved to eat and was always getting food and water in his lungs.So we knew pneumonia would be the one thing he could not fight. He had UTI's until they taught my sister-in-law to cath him 4 times a day with the Foley.No more UTI's.
I had never heard of MSA before, my mum had suffered a lot with falls around the house, she had told me around a year after finishing chemo and radiotherapy that she had bad vertigo, felt very unsteady on her legs and had dry mouth. She had been on anti-depressants so she assumed the dry mouth was down to that.
Keep fighting for every bit of help going. Stay focused putting the patient first. Don't take 'No' as an answer. Spread the word to ensure the condition is recognised and supported. There may be a small p after MSA but it is not Parkinson's. Mention Parkinson's and the immediate reaction of all is 'That's ok it takes years before there is any problem.'
This is your life now. Try to make the best of it in whatever way you can.
Get any and all assistance that you can. Let others help you. Tell your loves ones you love them before that ability is gone. Seek hospice for mental, spiritual and physical care. Diet, exercise, and medication can all work together to combat the symptoms.
Live every day to the fullest while you still can
Ian a registered nurse who could describe symptoms and observations
Never give up and live life to its fullest while you are capable.
Find out as much as you can to help understand MSA and what to expect and how to seek help, make sure health workers know about MSA I had a folder I received from Parkinson's group with information about MSA I would give to others to read to help them understand this condition as a lot of professionals know nothing about MSA
Physical therapy needs to be on-going but as soon as progress is stopped funding for PT stops
My husband suffers from Chronic Neurogenic Orthostatic Hypotension, I make sure he gets lots of liquids and high sodium, caffeine diet vegetables and fruits.Nuts.
My husband never felt much hope.
Always try to keep hope and faith. Try to enjoy any little moments you can. Go outside and feel the breeze, the sun and smell the flowers. Eat the foods you love! Spend as much time with loved ones and friends as you can. Tell people in your life what they mean to you. How much you appreciate, care for, love them. Make amends with people you care for but maybe had a falling out with. Whatever it is you need to say, say it.
Days may be dramatically different
Education was key. Having support groups would have been so helpful to us all. My dad was her caregiver. We were lucky to find a great hospice card service.
Keep a good diary and good reference so that you can share it immediately doctors having all the medication in a concise format so helpful when and if you have any emergency
Hospice was a huge help and supplied a LOT of equipment for free and different hospice employees would visit providing massages, music therapy, ministering, showers, and visits to share talks with
Stay active and positive, donate the brain for more research. If sleep is an issue melatonin worked well for her.
One should take note if your loved ones sre having excessive phelgm, this might be thr symptons of pnemonia
Take time for him or her. Be patient. Take him of her serious. Make fun! Do things he or she is able to do still.
There is not enough awareness still of this horrible disease. People need to know MSA like they do ALS, which is very similar in all respects. Caregivers - learn to take time for you as well. The disease that takes so many with MSA will have the caregiver paying a huge price as well in their health.
very rapid progression in the last 3 years. Went from being self-sufficient to wheelchair dependent, round-the-clock care, required catheter, toiletting, needed to be spoon-fed, required pureed food, unable to move (essentially paralyzed), unable to speak.
Much more information for doctor and carers
Take all the help that is offered. People can amaze you with their generosity and kindness. Also Hospice is a fabulous resource. We were on service for 2&1/2 years
Take picture weekly. Things change and you don’t realize how extreme the changes are from you eek to week.
Educate health professionals so that the patients and families can be given the correct help and support. If diagnosed with PD but patient deteriorates faster than expected ask for a review of the diagnosis. Speak to an MSA charity who should be able to advise what help is available and how to access it.
I would say to do research at home. Join the support groups. Question a doctor even if he’s “well known” in his field.
Just making MSA more aware. So many of my Dads Dr.'s and us too had never even heard about this horrible disease. I read everything that I could get my hands on to learn about it.
As caregiver, stay strong. Fight for the best care possible
since there is no cure, i would suggest to make the patient as comfortable as possible, but also make sure they get out of the house or hospital at least twice a week.
I learned a lot between 2005-2008 from the Yahoo support group for MSA patients and caregivers. It helped me immensely and knowing what was coming and how to best meet his needs.
MSA needs to be on everyone's radar. It is a horribly scary condition that medical professionals MUST learn about and understand thoroughly.
I wish that we had been aware of the MSA Coalition and the resources available. I was the sole caregiver, and fortunately for him, he passed away before the worst of the symptoms occurred (i.e., tracheostomy, feeding tube, total loss of speech, etc.). He did have to use a catheter 24/7 for quite some time and underwent a trial procedure to see if another option would work for him. It failed. His blood pressure was such an issue that we monitored it several times a day and made many trips to InstaCare and emergency to get it under control. Although he had not been a sickly person to this point in his life, he suffered from pneumonia, gangrene gallbladder, broken leg, and generalized weakness during the years of his illness.
It's an isolating condition as so few people including medical profession are aware of it. The lack of understanding leaves a person in a black hole with their careers having to constantly battle for services/support. Thankfully in U.K. Support groups are growing and MSA trust are better placed to provide help than five years ago.
Problem solving and listening to others who have dealt with such a disease helps. You want to provide the best quality of life possible for the patient and that can mean simply sitting and holding hands and talking, checking off bucket list items and doing things you previously thought you’d never be able to do in order to meet the goal.
The disease gets worse quick. Take advantage of the good days and be supportive of the bad. It is frustrating but they are mentally all there.
Once you get through the horrible diagnosis and realization that this is a terminal illness and that it will never get better, choose to laugh. My mom and I created many beautiful memories laughing at everything from me tapping the back of her feet in the beginning to remind them to move to me accidentally taking her in to the men's bathroom and threatening to leave her there because it is too hard to escape quickly with a wheelchair. This positive attitude also made her grandchildren remember her as the strongest person they knew and helped make them strong. I cry now. 4 years after losing her I cry still. But .y memories are of lots of laughter.
We had enough trust in each other that we were able to find ways to make caring work. Brain donation was considered and investigated but we were unable to find a pathologist. This should not be the responsibility of the patient and family.
I wish more healthcare providers were familiar with MSA. It took way too long for my dad to be diagnosed. And even then, it wasn’t fully explained or understood by providers.
There needs to be more awareness. I'd never heard of it til my Dad was diagnosed. And 99% people haven't heard of it so I always say he basically had motor neuron disease, which is frustrating.
One day at a time
He struggled a lot and went by very quickly when it declined.
The mental trauma she suffered knowing she was going to die was the worst part for us all. Knowing only the symptoms nit the actual disease could be treated was the main cause of her depression and feelings of loss of her life before she died. She eventually secluded herself and would knit even go to the grocery store with her significant other even because she dod not want to let other people see her wearing a diaper because she didn't want to be remembered that way. Please watch for depression as it comes up quicker than you realize.
Be prepared to make constant adjustments to the symptoms, and severity of them. Have discussions with the individual regarding end of life wishes. Get help!
Pray and rediscover your relationship with God. Not being afraid of death makes everything less stressful.
Keep a notebook, keep good notes. Make sure everyone knows you're taking notes. At least where we are in Hawaii, we found too many obstacles to quality care. The staff were too shorthanded, doctors were apathetic and unwilling to listen unless my voice was raised. Instructions to care staff were not followed. If you can escape Hawaii and seek care elsewhere I recommend you do so.
Take each day as it comes, make peace within yourself & with your loved ones, enjoy the good days & tackle the bad ones head on. You are never alone.
Robin had looking back had symptoms for a least 3 years before diagnosis, I kept asking the local doctor but she said he was ok. I thought he may have had a mini stroke, eventually he was originally diagnosed with Parkinson's when he went into hospital for a shoulder operation
Multiple symptoms very confusing; final diagnoses even though very negative was a kind of relief
Be patient if you are the caregiver. Infections and even sepsis are common. UTIs are common and can lead to sepsis. Know the warning signs.
Get help as soon as possible e.g. hospice and home care .
We weren't ready for her passing and should have been. Matters such as insurance and estate matters weren't complete. We thought we had more time.
Massage is so enjoyable and fulfills the need for human touch. I would pull up my hands and slide them under my mom's thighs and down her back . Laughing...find humor. I tried to tuck her hair away from her face when I would situate her- it wouldn't tickle her , I would often take a warm wash cloth to wipe her face thoroughly..her nose, inside corner of eyes...places she probably would want to clean or scratch. I used a squeezy water bottle filled with warm water to clean her on the toilet to keep her feeling fresh and clean . I fought for her dignity. We did her hair and put lip stick on her.
Don't give up looking for diagnosis! Wish we had more exposure to movement disorder clinics, but none in area. Spouse, family keep learning about MSA and share with medical people and friends/family. Be an advocate! Important! without finding the MSA support group online I would be lost! we all need a feeling of unity with others and spouses suffering MSA. Living in a smaller city knowing no one with MSA can be an unbearably lonely journey.
Fight for the care your loved one deserves.. Because the disease is fatal remember hospice is available and is quite helpful
We got Dad "Web TV" so he could participate on the Vanderbilt Shy-Drager list. Emailing with other patients was extremely important to him. He was always outgoing and this provided a social outlet for him
Allowing my husband to get out and about by having ramps and a handicap ramp enabled him to participate in family gatherings up till a week before he died. Having his hospital bed in the living room allowed him to be at the center of whatever was going on in the house.
Lisa passed only 2-1/2 years after her first symptoms. Bladder issues, and body temperature control were serious for her. In spite of the fact that MSA is known to cause serious temperature regulation problems, she was hospitalized time after time looking for infectious fever causes that couldn’t be found. She passed as the result of soda aspiration leading to complications.
The population is not aware of this MSA Not enough money for research
Do not hesitate to call in a palliative care or, as appropriate, hospice services. I cannot say enough about how wonderful the palliative care team was in helping us. He received nursing care, physical therapy, occupational therapy, and physician visits without ever leaving our home.
Having a good knowledgeable support system is key. I would also encourage others to get help from a quality hospice provider as soon as you qualify. Our hospice provider was a wealth of support and knowledge during Brenda’s final days.
Please don't belittle or make them feel bad about anything. We wanted our mom to maintain as much of her dignity as she could. We stroked her hair and talked to her even though she couldn't answer us. Even though she was in a "comatose" like state, we knew she could hear us and we're very careful to not comment on her health in front of her.
PD diagnosis was repeatedly questioned by patient and family because of the rapid progression. Tremors were non-existent until advanced stage of MSA (immobility of whole body, unable to walk or use arms/hands)
Make sure you have a Dr. Who specializes in MSA.
As a caregiver be loving and patient to the person suffering from MSA
It is critical to find a doctor who regularly deals with MSA patients and has access to a team of physical/occupational therapists who know what MSA is and can give you tools to help cope with the symptoms of the illness. Also, talk to your doctor early on about all possible outcomes - including the worse case ones - and talk with your loved ones about planning for all outcomes. Familiarize yourself with the services hospice provides and decide early on under what conditions you would want them involved in your care. Write these decisions all down so that you can go back over it with your loved ones as conditions change. Also, make sure you have a doctor who is willing to talk to you about the worst case scenario. My mom’s doctor told her MSA patients typically lived for 7 years and never revisited the subject even as my mom’s steep decline became obvious. My mom clung to that number and as a result refused to discuss hospice or make any other end of life plans. She died two years after her diagnosis.
Tried stem cell in the Bahamas. Actually made him worse, I think!
Take each day at a time. You will know when is the right time to go to the next step in this horrible disease
It is crucial for patient to have caretaker/spouse to be stable.
Be there for your loved one even if you can't help him physically just let them know you are there for them and they are loved. Do not abandon them
A lot of professionals didn't seem to understand MSA and the symptoms. I wasn't clearly told 'stages' and we had to guess. It would be good for patients and family/caregivers to know signs of death - this was never explained even through the hospice system. Mum died suddenly but now that I look back there were a few signs on the last day. When you can communicate be sure to outline wishes etc Towards Mum's last weeks it was very hard to communicate with her even through she had been communicating with her eyes for years. I would advise patients and family members to have a signal or sign that they can communicate if they feel like death might be approaching.
First symptoms of slurred speech and loosing balance when walking
Don't envy anybody that has to go through this horrible disease or anyone who has to care for someone with msa
Get support early. Msa is a rollercoaster. Physio is vital. As is speech therapy. Get ot support.
My husband had all the symptoms of MSA and nothing really worked it was just a slow 5 years of deterioration.
She suffered, every day all day. She would have glimmers of herself but towards the end she was lost most of the time. Confused, scared and in pain. I miss her. I miss me reading to her, holding her hand and remembering life before MSA. But the reality was that it was selfish for me to want her to stay. She’s dancing again, decorating for Christmas again, smiling her true smile again in Heaven. She’s no longer suffering and that is the only thing decent about this disease, is eventually it ends. It’s crude, but it’s true. It’s harder for us left behind than it is for them. Just remember to love you loved one and don’t let the sadness of the disease ruin the days you have left. They know what they look like, how they sound. They are still who they were just a little further away, love them because they need it.
The acceptance of there really is no cure. It is a horrific disease.
Initial diagnosis was not supported by caring professionals considering prognosis. Once quality of life began to deteriorate it was hard to keep more symptoms from defeating patient physically and emotionally.
Keep family and friends supporting the patient and caregiver. Use a psychologist for both patient and caregiver. Find the best institution available doing research on MSA.
Adapt and continue to find joy in life no matter how difficult the MSA journey becomes
Find a clinic that is familiar with MSA ....the MSA Clinicat UT Southwestern in Dallas Texas
Last weeks/days of her life because of MSA-c: * She would soon lose her electric wheelchair, because she bumped into everything * Even though she was sitting in her chair. She slept in it most of the time. * One of her hands has been cramped * Sleeping got worse and worse. She was often stuffy * Food hardly went anymore. Only with help. Her food was crushed, otherwise she could suffocate. *The night on which she left her life after about 21 hours later; she was uncomfortably stuffy and restless. She had been oxygenated for some time during the nights. * Muchy stuffy * She had cataracts on which she had surgery
from the diagnosis insist on everything the decisions on health open and honest the good bad and ugly get all legal document in order and wishes known we had poa and donation papers sorted a couple of years in best thing everif people can get talking openly with spouse and family soon as possible after diagnoses we were fortunate we had the years we had some didnt and dont have that privilege
The Shy Drager-MSA online support group was an immense help to me in preparing me for the situations of his eventual decline i.e. putting on a condom catheter, using a Hoyer lift, tips for preventing low BP, etc.
It seems each case is different
If one thing doesn't work, try another. This ordeal was like flying blind with a huge learning curve. A support system for those suffering with this disease, as well as the primary caregiver is strongly indicated.
We’re so sorry that you’re dealing with such a difficult disease that is so poorly understood and treated.
We were always in the position to be the educators of medical personnel. While it is understandable, it is something you don't expect to have to do. The other members of my family did not acknowledge how sick Dad was. This meant they stayed away because they always thought there would be tomorrow. I am forever glad I was his caregiver and we made memories while we could. The day Dad died, one of my brothers said to me, "the only thing the ole man ever asked of us was to be there in his old age when he needed us. I wasn't there." That is a regret I don't have. Live each day so you have no regrets.
Don't try to do it on your own. If someone offers you help, take it! Its hard enough emotionally and mentally but when you add physically.
Therapy, beyond drug prescription, would aid in relieving patient's stress coping with the condition as it worsens little by little. The hardest part is patients are fully aware of their symptoms and health decay; there is no drug that substitutes the mental/cognitive well being of any patient.
Please feel free to share any memories, thoughts or comments about the individual lost to MSA:93 responses
My husband bravely accepted his diagnosis because we had no other option. He dealt with all his symptoms as they appeared so courageously! As he lost his abilities he would remark that he always has his faith. He had been hoping to make arrangements to donate his brain, plan his own funeral service, say his goodbyes, and use the medically assisted dying scenario if needed. However, he passed away very unexpectedly one evening after a sudden drop in blood pressure likely triggered a cardiac arrest.
Fred was an amazing husband, son, father and friend. He was a compassionate law enforcement officer and a dedicated community volunteer; he loved life! We we fortunate enough to ride our motorcycle throughout much of the US, we traveled to other countries, enjoyed cruising and camping in our RV. We made a lot of memories and Fred collected a lot of friends. There were over 300 people at his memorial service! MSA stole this lovely man, but it cannot steal the memories I have or the love I feel.
He was accepting and lived life as best he could. He made it easy for me his wife and caregiver.
By the last year of her life, my mother was exhausted by the disease and was ready to give up the fight.
My mom died holding my hand. I had promised her that we would be together until the end. It was not a "good bye" but a "see you later". Until now I can feel your presence in spirit. I am an only child that has no family living in the same city. I supported everything alone. But my fight against MSA will continue until find a cure.
He never wanted pity. He was humble but still had a hard time accepting help. His best coping mechanism was laughter and love. Without his faith he probably would have passed later but without the peace he had.
She never complained
My brother was a tall,strong football player.loved to hunt and fish.A loving family man.We were all shocked to hear he had this very rare brain disease.He gave it a strong battle for 7 years,but never complained.Everything was done for him,that could be done,to make him comfortable.Get out and make the most of your time,he loved a simple ride through the mountains and a picnic near the streams.So that is where I would take him.
My husband was the bravest person I know. He never once complained. I was trying so hard to support him with the goal of our Golden Wedding Annversary next year. I failed.
Fiercely independent he accepted the situation and had the grace to accept caregiving making it easy for me his wife to provide it. He surprised family by being a model patient. Miss him every day. He said this disease made him feel not himself in all respects. He said it was hard to explain.
Widow, Mother, Grandmother, great-grandmother. My mom and I spent a lot of time together, especially while I cared for her. We shared stories and even laughed together. I will cherish every moment.
Jerry never gave up and had the best sense of humor. He never let MSA define who he was as a person, since the doctors couldn’t tell him what to expect he just went at life 110% and we as his family and friends let him. As long as he wasn’t hurting himself or anyone else we let him enjoy what time he had left.
The hardest and saddest thing for both of us was the loss of communication, Michael could understand and was aware but his speech came out jumbled and didn't make sense, so made it very difficult to converse and very frustrating for him, this still makes me angry.
Colleen was strong willed and was so hopeful for a cure she decreased very rapidly near the end over 2 weeks. She was the idol of my life was so sporty and caring and loved everything she did with strong passions to achieve.
Ron was and is the love of my life! He always thought about others and cared deeply for his family. Forever honey
I am struggling. This beast disease took my husband and my children’s father.
She was a wonderful woman, lived a long healthy life with lots of her own great memories. She would share with me all the time memories from Her past. I always loved encouraging her to share her happy memories, especially when she was feeling very sad and depressed. She had a strong determination to live and was always hopeful that a cure would be found before she passed. I cherished all the time I was able to spend with her before she passed. Even though she couldn't feed herself or drink well, I enjoyed taking her to her favorite sandwich shop and feeding her what she loved. I would take her outside in her deck and read to her. Sometimes we would just go for rides in the car. We would also go to the movies whenever we could find a happy movie. She was my friend and i will always miss her but I am forever thankful for having known her and for having the chance to learn about this horrible disease. By knowing her and MSA I can now bring awareness to MSA, even if it's only to a few people
Facing that diagnosis was incredibly brave. My mom never complained & never let us see her cry. I want to honor her memory by spreading the word.
James was an amazing individual who fought and fought and fought this disease for 12 years. We are all very proud of his strength and we miss him very much.
Terrible desease. I hate it.
because of MSA, retirement never happened. we were never able to take long awaited trips and vacations.
This is a horrendous disease that no one should suffer with. It's like ALS, MS, and Parkinson's all rolled up in one.
This is a very insidious condition but Allan met it head-on despite feeling isolated and self-conscious. He stayed in good spirits right up till the very end. Was a very gracious and courageous man.
She didn't like putting the burden on her husband but everyone else She lost all her so call friends
Very hard on all of us
msa is the worst disease that traps one soul in a body
Randall was always the most patient, caring, and selfless person I knew. He was so brave; fighting MSA with never any complaints. No matter how difficult the situation was, or how bad he felt, you would never hear him complain. Randall went home to be with our Father in Heaven on Valentine’s day, February 14, 2015. Randall was so loving and his family (children & grandchildren) were everything to him. During his last vacation with our 2 children and their spouses, he told his brother-in-law that his favorite part of the trip was sharing the experience with his family. Randall had just turned 57, two weeks before he passed away. Randall and I were married 31 years, and we have LIVED. We were fortunate to be able to enjoy life and traveled as much as possible before he became ill. I miss Randall so much, but I am thankful he has no more pain.
A lovely, lovely man who managed to maintain a positive attitude, smiling even at the end. A kind soul. We miss him so much but are so grateful he does not have to live in the prison his body had become.
MSA is a horrible debilitating condition that takes away the person you love
It is incredibly hard on all. I don't know how we got thru those years.
Dad was a very clever man who had two degrees (chemistry and Biology) and was highly thought of. He was very active and achieved a great deal in his life time. He was invited to the Royal Garden party at Buckingham Palace in recognition of his services to education. He threw himself into his hobbies and loved showing rabbits, especially Angora rabbits. He was on various committees connected with his hobbies and often held senior offices such as chairman, secretary or treasurer. Dad was a keen rugby player when he was younger and was selected to play for England under 11s. He never lost his love of the game as he grew older and would referee games. Dad was very humble in his achievements, never beng one to boast. MSA robbed him of so much including his hobbies, his ability to drive, which hit him very hard and his life in general. He was much loved and is very much missed.
He was never sick. He skied, surfed, road his horse and loved life. He was very active. I miss him with all my heart. He never complained. He was always loving and tried so hard to continue life as normal for as long as he physically could. He is survived by 3 children and 11 grandchildren. He was a man of God. The way he handled his impending death was with such grace. Many people gave their lives over to God as a result of Kenny’s faith. He was brave. I miss him. We all miss him.
My Dad was the very picture of courage. He never stopped smiling and enjoying his family. No bitterness or anger was found in him! His motto, when asked about this lot in life was "it is what it is!" This disease steals so much. My dad was such a big strong man reduced to communicating with a small nod of his head to a twinkle in his eye for a laugh. Please work diligently to find a cure. It is what it is and it is a thief!
My Dad was a very proud man. It was very difficult for him to make the decision to move into a care facility. He made lots of friends with both the staff and other residents. The night that he passed away, some of the staff that was not on duty even came to say good bye to him before his body was taken away. That would have meant so much to him. I hated this disease as much as I loved my Dad. This was the most hardest thing that I have ever gone through in my life. My Dad was an outdoorsman his whole life until this F*~<#n disease took him away from me. It may have taken his body but it did not take his spunk!
We tried everything to help and found exercise a great benefit and continued to do as many things as possible
My husband had a lovely bubbly character till the day he got that horrendous diagnosis. He said it was like a death sentence. He lost his spark but he was still funny till the end. He is at peace now the only consolation is that he could still speak till the ebd but extremely slurred and that he didn't end up bed bound with this disease which he would of hated.
my father was a kind generous man, father to nine children who all turned out to upstanding, respectful citizens. that in itself, is a testament of his legacy
We were blessed in that he came from a large family and his sisters, daughter and my niece all adjust their schedules to come and care for him through the week so I could continue working for insurance purposes. You never complained, just said he was grateful it had not afflicted any of his loved ones.
My husband was amazing. He never complained about his condition. I don’t think he wanted to make it more difficult for me,
My mother was a beautiful and caring person whose life was cut short by a painful and debilitating disease.
He was an intelligent, kind soul who became a prisoner in his own body. His mind/thinking were perfect. He was simply unable to control things voluntarily and unable to take care of himself and/or the things he loved.
My husband always was a positive person in his life. This condition was frustrating for him and he saw himself declining, but we loved and laughed through it; and while we understood he would not recover from it, we did not dwell on the ending. That came as a total surprise. He would comment from time to time that he was "tired of all of this" and "I wonder what I will lose tomorrow." We were married for 50 years. My heart is broken without him, but I have joy in knowing he is relieved of his suffering. He was a trooper throughout all of it.
This disease robbed me and my children of a wonderful active funny man who believed in living life to the full. He has missed so many events in the family and it hurts still that he is gone from our lives. The last six months were nothing but pain and torture for him and for us watching it happen and being powerless to help him and his not knowing us most days as the hallucinations and terrors were so prominent. MSA is brutal and my husband wanted to die but had to suffer right up to the end as no one seemed to be able to stop the pain. Broke our hearts
My Queen was an awesome wife who lived 9+ years with CRPS before the initial symptoms of MSA began. She took on the disease and the diagnosis as many might; she struggled with depression some but her daily mantra of “I am woman hear me roar” helped her until the end.
Kenney was my Darling. We were a team in the management of the symptoms of this disease. He was a good, kind, friendly man who loved deeply.
My dad became a vegetable. But inside he was the same person. I never got to know him as an adult. He was diagnosed when I was 18 and died when I was 21. We were told 7-10 years but he deteriorated really quickly and his death was a blessing in the end. A horrible horrible illness that not enough is known about.
The most amazing person that I have ever known.....gentle...
She taught us all how to fight when she had the energy to. She taught us to live eberyday lime it was your last, and most importantly to tell the ones you love that you loce them because one day you may not physically be able to. God bless everyone still fighting this battle. Keep on fighting the good fight and telling others about wuat going on woth your life that was my moms final woshes that we not stop advocating for future families.
My wife decided early on that she did not want life saving actions taken, including, feeding tube, tracheotomy. She wasn’t given any hope of her condition improving or slowing the progression of the disease, so she was concerned about the quality of her life over the quantity. She was also concerned about what the disease was also doing to her loved ones as well. Her biggest regret was that the disease was robbing her of her time with family and grandchildren, she was especially regretful that her youngest grandchildren never got to know her and would not have memories of her, other than the way she became as the result of her disease. Carol did not give in the her struggles with the disease until the last year. That last year saw her always exhausted. She did not sleep well it took an enormous amount of energy to do the simplest tasks. She often stated, during her last few months, that she was tired of how she was and did not want to continue living the way she was. Carol got her wishes of dying at home, peacefully in her sleep. My prayers were answered in that she did not have to suffer the full consequences of her disease. She was just getting to the point of being bedridden, but could no longer do the basic living functions for herself, dressing, washing, brushing her teeth, toiletry, etc. I had started feeding her some foods because she could no longer manage that as well.
Thank you for asking about James. James was our family and community hero! There were over 400 attendees at his funeral service which tells you something about how he affected everyone around him. He was a giant of a man, an athletic, and caring gentle giant. He spread love and caring to all his clients thru his counseling services over 25 years. His smile was everything to us all. We are still heartbroken at losing him so young and too soon.
Assumpta was my older sister, she spent her working career as a nurse, caring for patients. During her own illness her husband & main carer was in denial & did not accept any external help. MSA robbed her of her independence, her job, her life, but it could never take her mind, wilful strength or her wonderful sense humour. She will always be my lovely sister, my hero!
I feel sad that when he was finally diagnosed he said he knew something was seriously wrong, I wish he had shared his fears with me. He was incredibly brave he just accepted it and got on with it.
My darling wife of 45 years made my life happy.
It was horrible to lose my mom to MSA C. We graduated together with our Masters degrees in 2005. We had no idea then how our lives would change due to MSA.
Began our life together working in rural West Africa hospital, loved helping others, later enjoyed travelling to other countries, with camera always. Very involved in community, sense of humor, Coped with MSA with much grace, a loving , supportive spouse and father.
My mother was a strong, independent single mother. All of her strength was stripped due to MSA.
Rick was always the guy that had everyone laughing. I did something everyday to make him laugh. We were together 45 yrs (married 43) His Sr. Prom our first date, my Sr prom we were engaged. We always did soooo much together. We were best friends 💕. Where there is great love 💘 there is great loss. I miss his love and tenderness more than I can express.. I hate MSA
Other family members could not fathom he had a terminal disease. This meant we talked about now and the future. Today I cherish our chats. Sunday mornings I would make us a special breakfast. My brothers would get upset that I fixed him morning coffee and bacon - two things Dad loved but gave up after bypass surgery. Told my brothers MSA would kill him before coffee and bacon, and it was such a little thing but gave him something to look forward to the rest of the week.
My mom was always an active, healthy, happy, loving, hard-working woman before MSA-C. It is the worst disease ever. Even with MSA, she never complained, always fought it with all her might, and never gave up.
Kenney was my Darling and we allowed others to do chores for us so that we were able to spend our moments together. I would often climb into his hospital bed with him; the dogs and the cat would join us in a great big cuddle, then a nap. Remaking physically as close as possible, outside of routine physical care was extremely important for us in our marriage.
Lisa was a beautiful young intelligent woman whose life was taken so rapidly by a virtually unknown disease. All throughout, she remained pleasant, never questioned why it happened to her. It was my greatest privilege to have loved and cared for her.
David was, according to many people, the best man they had ever met. We knew what the diagnosis meant, and he never wavered in his courage and his love for his family and his friends. We made every minute count after he was diagnosed.
A very much loved mother, grandmother and great grandmother. Very spunky, tell it like it is, independent little lady. She was worried about depending on us for care towards the end she was a shell of the lady she was. It was very hard watching her deteriorate so rapidly. We miss her everyday. Love your loved ones because tomorrow is not promised .
Lovely, lovely man who fought valiantly against muscle loss/deterioration. Kept smiling until the very end.
My Sister was a beautiful red headed full of life person. She was diagnosed with MSA late in her illness. I took her to numerous Doctors who just didn't have any knowledge of MSA. Cannot say how many times we were turned away from Hospitials. My heart was broken. I wanted to make her better so much. My family couldn't even function enough to make arrangements after her death. I did everything I could. She had no funeral no celebration of life. I had her cremated...I had a nervous breakdown. My family will never be the same. Everyone seemed to have lost all joy when she passed. She was the heart of our family. I still can't believe she's gone..
He was a real trooper!
I miss her so much. I talked to her everyday and feel so lonely without her. There’s just no one else who knows you and loves you l8ke your mom does.
My Dad was a beautiful man who loved his family. He looked after himself such a fit man who worked full time up until he got sick ate home cooked meals and worked in the garden every weekend, my dad fought this horrible disease right to the very end it is just unfair to watch someone you love dearly suffer the way he did and there is nothing you can do to make it better.
The night before he past away he watched Heaven is for real which is very comforting to me maybe it helped him on his finally journey home
He fought until his last breath to stay alive.
I cannot at this time. It was such a horrific thing to watch
My memory of my brother was looking in his eyes and still seeing the kind and loving person that he was
It is a horrible disease to watch a loved one go through and I just would advise people to communicate while they can so that in the end stages their care is as best it can be.
So sad to see her slowly deteriorate from a beautiful active caring woman to laying nearly motionless in her hospital bed. This terrible illness was eventually diagnosed about 5 years into her illness. So little is known about this illness and hopefully through surveys like this people will become more aware.
Took almost 1 year to be diagnosed with msa then every thing was so rapid think the 1st time he went into hospital with pneumonia it took a little bit of him because when he come home he couldn't walk with his walker any more so had to use wheelchairs and all that he suffered he didn't really complain we used to laugh a lot especially when he was trying to say something and I couldn't understand him we did a lot of laughing and now I do a lot of crying
A great man that didn't deserve to get this horrible disease that has no hope.
His mind was fabulous but his body gave out. He never complained.
A wonderful husband and father. Active and athletic. The last year of his life was the worst thing I had ever seen anyone have to go through
Loving mother and grandmother robbed of another 15 years of life by disease unknown to the world outside of patients, families and caregivers. Need more public awareness.
My husband who passed away in June of 2016 was never able to accept his illness. He would often ask me what was happening to him and his illness was so much more tragic because of this. He was bedridden and incontinent for a year before his death and depended upon HHA's for bathing, turning him from side to side and changing his bedclothes every night because of excessive sweating.
Jerry loved life even though he be come extremely functionally impaired. He laughed every day and just enjoyed the small moments of life.
Paula was a fighter who fought the epic fight against this disease
Before her MSA, she was Lways active with her children and in the household. She played sports with her niece weekly. She was most of the time sweet and wanted the best for her children. She spoiled her youngest child a lot. During the ilness she turned more towards herself. Was sad, depressed and gradually become more anxious. She forgot many things. Despite thise, I have had fun moments with her and we have laughed and cried a lot together. I will miss and love her, always.
Derek was a lovely caring considerate husband that all change a couple of years after diagnosis but my Derek did appear at times He also had a great christian faith witnessing to the lovely hospital staff up to an hour before he passed he said the lord is calling me home 6 hours before he went
Marc was an incredibly patient, intelligent and caring man. When within 2 years of his MSA Dx he told me if he had to live the rest of his life in a diaper that he didn't want to live. Naturally I was afraid of severe depression, suicidal thoughts or such because I knew from my reading about MSA urinary and bowel incontinence was probably 100% predictable. But he seemed to take the total decline of his body without being difficult or complaining.
He was always healthier than me
Best friends stopped visiting. He was a mountain climber and avid exerciser. The doctor’s thought his symptoms were postponed due to his lifelong healthy habits. He was very fit and very active before the disease. He was 79 when he died
In the end my husband died suddenly of a major heart attack and didn't get to the stage of been bed bound spoon fed washed and cleaned. Therefore something else can kill you in the end instead of msa before my husband could have ended up frozen in his own body with your full mind intact. For him it was probably the best way he went as he just got sick at side of bed while on holidays with no sound or gasping and autopsy report said main cause of death was heart attack. For him he would not have coped been bed bound so probably for him the best way to go in the end.
She suffered from the "martyr syndrome" & despite family members urging her to quit work, she continued to stay employed in order to keep insurance coverage. It wasn't until the week of her retirement that she fell at work, broke a couple ribs, & her daughter demanded that she would work " No More". She was unable to attend her retirement party that week & died 6 days after her birthday one year later..
She was a devoted mother to her son and a dear friend to me.
Dad loved wild places. He taught us, and his boy scout troop, the beauty to be found camping. I still remember camping trips. Dad loved singing. Before SDS (or MSA as it is known today) Dad sang in the church choir and with a local Barber Shop Quartet. Each day, when I was cleaning his trach, we would sing. Something I remember fondly. Dad was a friend to all. He treated everyone as he wanted to be treated. I never heard him speak badly of anyone. It is an example I try to live in my life.
Wish it could have been diagnosied earlier than maybe meds could have slowed it down. Maybe if there were some tests that could detect the outset rather than just calling it "arthritis". George was a good man, wonderful father, loving husband and a doting grandfather. I miss him terribly!
The seven years my mother struggled with a series of symptoms and the stress of not knowing her diagnosis were the saddest, most demanding and slowly discouraging perior of my and my family's life. Though she was always taken care of by ourselves, refusing to delegate her care and well-being to relatives or strangers, her MSA-c progression was too fast. No drug seemed to be effective for long, so knowing she was entirely aware/ conscious of her condition was the worst of having to cope with it.

What 5 words would you use to describe him/her?

Kind family man who loved his children & grandchildren.
Brave, generous, giving, organized,hard-working
Brought out the best in any one she met
Strong, passionate, loyal, kind, talented.
Worker, focused, strong, intelligent, outdoorsman
Brave, brave, brave, brave, and brave.
Beautiful, strong, warrior, happy and the best mother ever.
Wonderful, loving, thoughtful, sadly missed by his family
Loving, stoic, intelligent, generous and faithful.
Kind, loving, thoughtful, peacemaker, patient
Strong,caring,loving,positive,handsome
Beautiful, Amazing, Caring, Loyal and My Best Friend
Intellligent Brave Uncomplaining Amazing Loving
Intelligent. Inquisitive. Independent. Naturalistically . Loving.
Strong willed, strong desire to live. She loved the Lord with all her heart.
Loving, funny, caring, smart, sweet
Intelligent, gentle, patient, proud, loving.
Strong honest reliable caring friend
Kind Loving Gentle Loyal Smart
Weak, sudden drops in Blood Pressure, constipation, passing out.
Intelligent, kind, loving, family man, hard working
Strong willed Preserve Anxious Loving Determined
Brave Loving Talented Mom Nana
Happy Hawaiian and Blessed to know him.
Willing to live, gentle, positive, Good person, patient, the Best Mother anyone could ever have, loveable
sensitive, loving, talented, generous, wonderful wife
Never negative, accepted with grace, quiet, large appetite, the joy of laughter
Frustrated at times
Strong, funny, smart, giving, loving
Strong , loved life , caring
Trying to smile often even he was having a hard time
Brave Strong Positive Social Sweet
Caring, Loving, Courageous, Family Man
kind funny generous caring introspective
Beautiful caring loving funny intelligent
Thoughtful, kind, resilient, funny, loving. He never stopped being a wonderful man.
Loving, caring, supportive, opinionated, stern
Intelligent, clever, funny, humble, loving.
Depressed, angry, creative, father, tortured
Godly, loving, faithful, very brave.
Brave, fun, a friend, loved and missed
Loving,caring,funny,nurturing,strong.
Strong , resourceful ,brave ,resilient, , beautiful
loving caring bubbly beautiful comedian
Active Caring Fit Healthy Hard working
Brilliant, funny, loving, compassionate, great father and husband
strong, determined, loving, disciplined, humble
Stoic, strong, good humored, uncomplaining, wonderful.
Clever Persistent Uncomplaining Undemanding Stoic
A man of God
Smart, caring, beautiful, humble, and dedicated.
Funny, kind, loving, wonderful grandfather/husband, enjoyed life.
Loyal Loving Courageous Brave Determined
Loving funny handsome loyal friend
Strong, compassionate, understanding, inquisitive and positive
Caring,funny, thinking of others before herself,
Smart, funny, loved, witty and blessed
STRONG Caring Selfless Respected Responsible
Darling, Love, Friend, Home, Rock
Volunteer, thoughtful, quiet, contemplative, and caring
Hero Father Clever Kind Supportive
Generous-competent-knowledgable-short tempered-liked food
Gentle....patient...understanding...intelligent...people person
Kind Loving Brave Generous
Patient, tolerant, angry, frightened, disciplined
Gentle, Caring, Determined, Strong, Integrity
Sweet, determined, accepting, sad, resolved
Strong, stubborn, love, fighter, mom
Caring, devoted, loving, head strong, all about her children and grand children
Strong, beautiful, smart, funny, loving
Loving, caring strong Hawaiin man.
Strong, inspirational, selfless, loving, amazing.
Brave - kind - loving - generous - indomitable
Brave (in the face of adversity) Patient Humorous Irreverent Accepting
Smart, funny, loving, kind, wonderfully kind.
Loving, strong, smart, driven, and beautiful.
Warrior, sacrificial, resilient, love, perseverance
Intelligent, curious, spiritual, sense of humour, devoted family man
Dad funny role model kind
Caring Strong Independent Strong-willed Loving
LOVING TENDER KIND FUNNY LOYAL
Selfless, compassionate, brave, devoted, strong
Blessing Angel Best Peaceful MSA-free
Funny, generous, kind, loving, strong.
The love of my life.
loving, courageous, faith-filled, open-minded, builder of bridges, not walls
strong patient determined loving missed
Compasionate, good person, emphatyc, cared for every one except herself, best mom on the world
Kind, loving, courageous, appreciative of her caregivers, but most importantly...valued and trusted in her Lord Jesus to carry her home. Her faith was beautiful to watch as she faced this horrible disease!
Brave, Independent, loving, kind, and stubborn (set in her ways!)
tenacious kind generous thoughtful romantic
Beautiful free spirited best friend caring giving
Loving, strong, funny, good, big hearted!
Intelligent, kind, funny, loyal, and lovely
Unselfish Brave Wise Funny Considerate
Smart, kind, never complained, generous, southern gentleman
Boundless strength of inner engergy
Happy fun loving romantic man
Kind, steady, loving, strong, active.
At the time mad, depressed, lonely, tired and stuck!

What 5 words would the individual have used to describe himself/herself?

Same
Hard-working, planner, helper, impatient, thoughtful
Friendly,loving,kind,excellent cook,beautiful
Stubborn, funny, determined, adventurous, loving
Focused, worker, thinker, strong, outdoorsman
Independent, patient, kind, gentle, tired
Stronger, Fighter, Warrior, Winner and Grandma.
Confident, smart, happy, talkative, generous. All before MSA Introverted, embarrassed, unsociable, wanted to be a hermit. As time went on
Loyal, creative, loving, patriotic and faithful
Ordinary, quiet, boring, kind, respectful
Scared,lost,surprised,unhappy,afraid.
Ordinary Boring Stupid Nuisance Different
Independent. Perfectionist. Naturalist. Rigid. Loving
Christian, American, wife, Mother, Grandmother
Accepted her fate never complained
He would have said he was just him
Loyal, strong, reliable, disciplined
Dedicated confident intelligent friendly caring
Weak upon standing, dizzy and passing out in seconds, constipation..
Hard working, loving, Daddy, driven
Determined Strong Loving Happy Hopeful
Loyal Happy Shy Proud Loved
Beautiful.
Thankful, gentle, positive, patient, loveable
caring, talented, misunderstood,
Sensitive, not wanting to impose on anyone, recluse, concientious of what others thought about her, woman of faith.
Fighter
Optimistic
Strong and love his family
Stubborn, Loving, Child of God
I like to think he would use the same five words, even though his modesty would probably make him feel that he was bragging.
Cook cleaner and bottle washer
He always said he was a lucky man. He said Micheal J. Fox stole the title of his book from him. He would have said also that he was loved and fulfilled
Organized, strict, professional, loving, dedicated.
Clever, loving, knowledgeable, helpful, hard working
A carpenter, like Jesus.
Faithful, determined, loyal, worker, content
Funny,strong,loving,friendly,outdoorsy.
Afraid, depressed, grateful ,
Organiser Family loving Caring
Handy, thoughtful, loving, problem solver, lover of nature
he wouldn't
Nuisance Loving Grateful Annoying Individual
After MSA: Depressed, anxious, frustrated, angry, useless.
Frustrated Puzzled (at how he had this condition) Resigned
Loving funny energetic cheeky loyal
Bull headed, compassionate, grandmother, good friend,
Same as mine :)
Simple Hardworking Busy Blessed Plain
Good, Friendly, Husband, Daddy, Grandpa
Father Intelligent Kind Happy Hairy
I really cannot answer that
Funny Loving
Disciplined, loving, giving, frightened, angry
Cant answer this
Frustration, sad, confused, lost, afraid
mom, alone, depressed, loved, painter
Humble, a good fisherman and beautiful!
Determined, outgoing, stubborn, great sense of humour, scared.
Goal oriented, driven, mom, mema, great mema
Spiritual, concern re underprivileged , loved medicine, traveller, loving husband, father.
Big-hearted Strong Hard-headed Outgoing Fun
LOVING FUNNY LOYAL HARD-WORKING HELPFUL
Spiritual, friend, active, singer, preacher
Independent Strong Helpful Loving Blessed
Strong, loyal, trustworthy, dependable, loving.
Lived a full life in 43 years.
loving, faithful, open-minded, scholarly, kind
Hard decision making, want to help people, loves most
Loving, faithful , questioning why, anxious, and a Christian
Busy, Independent, Truthful, Dependable, Kind
Loveable kind spiritual thankful afraid
Loved his family, inteligente, hard worker, strong faith, great dancer
Fabulous, intelligent, witty, lovely and loyal
Philanthropist, athlete, competitor, husband, grandfather
Lover of life
Handsome hunter and fishing man
Outgoing, funny, caring, energetic
Caring, Strong, Pragmatic, Loving, Creative
Fun loving, witty, caring
Not sure
He was modest. He always said you're born to die. We're only passing through this life.
Positive have a go at everything
Weak Loving Scared Hurt Mother
Mother, grandmother, loving, supportive, listener
Honorable, funny, fair, collegial, warm
Realist Happy Hard working Determined Thoughtful
Dedicated Modest Blessed Loving Happy
Not a good enough mother
ordinary hardworking truthful easy going Christain believer
Honest, kind, good dad, spiritual
Hard working. Family man. Devoted. Loved to socialize, intense. Caring Worrier at times. Responsible. Extremely energetic
Funny loving
Weak, anxious, fearful, unsure, dependent.
Christian, Smart, tenacious, all-in, attractive
Spiritual, singer, friend, lover of the wild, bowler
Loved, Christian, Honest, Parent and Husband
Cool humoured, social and a great cook!

Please feel free to add suggestions/feedback regarding this survey:

Thank you for allowing me to share our experiences with this horribkle disease and how it has affected our lives.
It isn't easy to go back and relive all that my brother went through.He was diagnosed at 57 but showed signs a couple of years before. When the symptoms did start,they were so rapid and he just kept getting more helpless.Pneumonia was the one thing he could not recover from. He passed in his sleep.His body is free,but for us he is no longer a part of our lives.I don't know how this can help anyone,But his was a text book case.
I have added feedback as I have gone through this survey.I hope this was helpful. Filling this in has helped me to release some of my feelings. Thank you. I have only been four months without my husband and am finding life hard but keeping that to myself. MSA took him from me so quickly, I hardly had a chance to realise what was happening.
Thank you for facilitating this survey. Doctors, caregivers, Hospice’s, families-all need to be made aware and have the latest information regarding this horrible disease.
I hope that more research goes into finding a cure for this insidious condition so others don't have to watch their loved ones suffer like I have.
Thank you

dataMSA

Survey Report Representing
Individuals Lost to MSA

Date of Report: 01/01/2019

dataMSA

dataMSA

Survey Report Representing Individuals Lost to MSADate of Report: 01/01/2019

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Survey Report Representing
Individuals Lost to MSA

Date of Report: 01/01/2019