Survey Report Representing Individuals Lost to MSA
Date of Report: 01/01/2019
Number of Participants: 131

Summary:

The dataMSA Survey Representing Individual’s Lost to MSA was launched in July 2016. The purpose of the Survey was to allow caregivers and loved ones of those lost to MSA to share information and data. We are grateful to them for sharing these invaluable experiences.

If you wish, you may share the name of the individual lost to Multiple System Atrophy and the date of his/her death:

Shirley, 13 Feb., 2016
James O S Graves, Jr
Theodore Mason 1/12/16
Randall Sudduth; February 14, 2015
Allan Wilyman - 8 April 2015
Pamela Kovacs 16th May 2010
Chris Lightfoot 28.05.2016
Vania Andrade Froes. 11/07/2016
Chris Lightfoot
Eric Mace 8/3/16
Colleen Gay Webster 02/11/2015
Lorraine Sandoval March 23, 2013
Virginia Aguilera 11/25/15
Albert Frankel
Gerd Roland Dunkelberg, 10/31/2016
Ann Thorpe 27/12/16
Ellis Brown -12/31/1985
Robert Dillard September 28, 2012
Allan Wilyman - 8 April 2016
George Nicolaidis 12/10/2016
William Cherrington 29/08/12
Suzanne passed on 1/5/17
Warren - 4/4/16
eugene h bouslog
William Allen Smith / January 10, 2017
Michael Clarke 31/1/2017
Joseph Hurt
Clive Nash 13.12.02
Judy McAndrew
Ann Thorpe. 27/12/2016
Bo Chaney 4-16-2013
Michael Clive Ginns 17th March 2017
Jerry Hauser 12-20-15
Robert Litts
Patti Lee Riley, 05/24/2017
AndresCota
Ricky JOHNSTON 3/11/2016 age 62
Joseph J. Kastelic Sr 4/21/2017
Lucille Riley 12/23/2016
Richard Ciganko 2-5-16
Louis Allaire-June 15, 2014
LaDonna Mitchell 5/19/2015
Roy Ward, MD. husband
Bonnie Fay Morris 29/09/2016
Bob Thomas 7/12/2008
Nancy Kelly March 28 2017
Assumpta O’Brien, 01/04/2017
Mary Harmon Dyke 10/11/86
Barbara Barton, June 11,2014
Brian stanley 24/05/17
Ted Mason. 1-9-2016
Kenney Derenthal February 5, 2018
24.1.18
Ian morrison 24th March 2017
Theresa Haugh, May 14, 2017
Janice Jackson
William Earl (Bill) St. Clair, II
Jerry C Cathell 01/23/2016
Dona Carriger
Dyliss Ann Frith nee Adams. February 2017
Vesna Vidić, 18.02.2018.
Justino Gomez October 26, 2016
Donald Lee Moore, Jr. Oct. 16, 2017
William Volker 2/27/16
Lisa 10/09/16
Connie Hannon October 7, 2014
Carol Brandt. 4/19/18
Dennis Morgan
Ron 11/12/17
Howard Silverblatt 6/10/2017
Jill Keenan 6/04/2013
Allan Wilyman
Kathleen Boyle
Steve died May 1, 2017
Brenda Sebert; 10/07/18
David W. Adkins 9/14/2018
Dorothy Cunningham/ 1/4/18
Paula M. Stahl
Doug Brewer 9/17/17
Brenda Sebert 10/7/18
Brenda A. Sebert/10-7-18
Mary Colleen Kellerman, 2/4/2016
Lisa M. Hunn 10/3/17 Age 43
Michael Fitzgerald 6/9/08
Edward Heitov
Joseph Hurt December 30, 2012
Anja Friese 15 May 2016
Irvin Wells, Sept. 1, 2013
Fred Wold, September 20, 2018
Kenney Michael Derenthal 02/05/2018
Mark 2/14/2018

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

1.9%

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

3.9%

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

9.7%

Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, N/SCarolina,, Tennessee

10.7%

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

15.5%

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

4.9%

Region VII: Iowa, Kansas, Missouri, Nebraska

6.8%

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

1.9%

Region IX: Arizona, California, Hawaii, Nevada (Trust Territory of the Pacific Islands)

5.8%

Region X: Alaska, Idaho, Oregon, Washington

1.9%

Region XI: Canada

6.8%

Region XII: Central America

Region XIII: Asia

Region XIV: Africa

1.9%

Region XV: South America

1.9%

Region XVI: Antarctica

Region XVII: Europe

18.4%

Region XVIII: Australia (continent), New Zealand

7.8%

What was the individual's gender?

male

60.9%

female

39.1%

What was his/her primary occupation?

Welder
Teacher
Nurse
geological engineer
Commercial beekeeper
Housewife, previously photographic developer
Naval Officer
labourer in chemical factories
Architect
Naval officer
Automotive
Hardware store Owner
Business partener and administrative position in panel beating workshop
Compensation Analyst
Administrative Support
Surgeon
Teacher/Instructor
Primary school dinner lady
Railroad engineer
Heavy Equipment Operator
geological engineer (chief mine engineer in potash)
Factory Worker
Operations manager in RAF then as a civilian
Interior designer/decorator
Fiberoptics network engineer
retired navy commander
Truck Driver
Army Officer
Losing balance; coordination problems.
House wife. Help on farm
Retired from federal government work
Machinist/cook/dinner lady
Air conditioning, heating, pipe fitter.
Nuclear engineer
Dentist
He worked for the Milwaukee Railroad.
CPA
Musician/construction/landscaper
Fire fighter
Dietary dept in Hospital
Labourer at Pfizer, Courtaulds and a few other places.
Teaching assistant
Physician/Surgeon. (researched and found he had MSA before neurologists etc
Housewife
sales, publishing
Registered nurse
Business owner
High School Home Economics Teacher
Clerical admin. State of missouri board of probation and parole.
Driver
Builder
Electrician
medical technologist until fully disabled 2005
Teacher
Financial Systems Analyst
Electrician
Crop duster flagger, boll weevil, white fly field tracker for the state of Arizona
Informatics
Land development, private home and office builder. Engineer
Labor
Auto tec.
Life insurance
Attorney
Housewife and mother to her four children. She did work, part time, as a cafeteria helper in our children’s grade school
Administrator, teleoperating
Car Salesman
agent for Delta Airlines.
Teacher union rep
Insurance underwriter
Legal Secretary
Sewing Machinist
Assembly worker
Navy Helicopter Pilot
Office Manager of family-owned oil supply company for over 40 years.
Electrical engineer
pastor
Homemaker
Housewife
Contractors
Business manager
Clinical coordinator
Business Office Manager
Physical therapy assistant
Real Estate sales
Electrical estimator, security software designer
Statistician with Bureau of Labor Statistics
Self-employed. Carpenter dealt with chemicals a lot.
Artist
Hadn’t worked for many years due to disability caused while serving in Vietnam. While working before that time he was a physician assistant.
Law enforcement officer, retired
Engineer

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

Yes

20.8%

79.2%

If 'Yes', please explain:

exposure to toxins
toxins
Wonder if the photographic developing solutions contributed?
-many chemicals that caused severed neurological side effects -also had pulmonary fibrosis from working with asbestos
Dust- asthma
Of course, no proof, but I believe it contributed to her having Multiple System Atrophy.
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
Stress; expecting more appreciation at work; not getting the recognition he deserved.
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.
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 MS confirmed by autopsy
Chemicals and machinery at Pfizer caused asbestosis. Chemicals at Courtaulds caused serious side effects to the nervous system.
Breathed in metal fumes.
Pesticides
Not to my knowledge
Unsure
We don't know.
Not sure, possibly the oil fumes??
Worked in laboratory with high frequency radiation. Soldered. Also worked with video games. One fell on his foot.
Worked around x-ray machines
Vietnam Veteran with known exposure to agent orange
a lot of chemicals, such as resins, lacquers, etc
Exposure to agent orange while in his work environment when he served in VIETNAM IN THE late 1960s.
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.

Diagnosis Data:

With which type of MSA was the individual diagnosed?

MSAc

35.8%

MSAp

30.3%

uncertain

33.9%

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

40 or younger

41-45

0.9%

46-50

4.5%

51-55

5.5%

56-60

15.5%

61-65

25.5%

66-70

19.1%

71-75

18.2%

76-80

7.3%

older than 80

3.6%

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

less than 1 year

1.9%

1 year

6.5%

2 years

23.1%

3 years

19.4%

4 years

11.1%

5 years

13.9%

6 years

7.4%

7 years

8.3%

8 years

1.9%

9 years

3.7%

10 or more years

2.8%

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

Prior single traumatic brain injury

1.2%

Prior multiple traumatic brain injuries

Prior single head trauma resulting in concussion

14%

Prior multiple head traumas resulting in concussions

2.3%

Prior history of chronic headaches

8.1%

Prior neck/back injury

15.1%

Prior multiple neck/back injuries

5.8%

Prior high level of exposure to chemicals/toxins

32.6%

Prior exposure to high levels of stress

34.9%

Prior diagnosis of Post-Traumatic Stress Disorder (PTSD)

Prior diagnosis of Neurological Illness

17.4%

Family history of neurological disease

12.8%

Other

20.9%

Please expand on your answer(s)

Diagnosed with Parkinson's Disease in 2000. We kept questioning this because of signs, symptoms and rapid deterioration.
Photographic developer
Dementia + Parkinson’s Disease
Has severe Neurogenic Orthostatic Hypotension.
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
Kidney disease, orthostatic hypotension, night sweats and nightmares, surgery to repair an Abdominal Aortic Aneurysm, heart attack with stenting.
Treated for 3 yrs for Parkinson’s
Server in Philippines during WWll -had Head injury with shrapnel
Given his job he had exposure to diesel fuel and exhaust
diagnosed with PD in 2000
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
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
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.
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.
She was initially diagnosed with Parkinson's disease in error.
Suffered with spondylosis of spine Mother suffered multiple strokes.
Exposed to chemicals as part of his job, i.e. Freon, gases.
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.
My Dad was in a very bad car accident years prior to diagnoses.
My mom believes it started after a fall.
Father suffered from epilepsy and mother from schizophrenia
Mom - Lewy Bodies
None of these known.
Herniated discs not related to trauma
Louis fell off a truck when he was a kid and suffered a concussion. He suffered from severe 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.
Family history of Parkinson's disease.
Related stress to work environment, appeared to handle stress well
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.
Emergency nurse. Mother had Parkinson's
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.
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 palsy 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.
Pesticides and cement and lime
Did have a beam fall on him when he was in his 30, s but recovered after Physio.
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).
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.
She suffered a broken leg and head injuries prior to her diagnosis
My husband had daily contact with toxic chemicals from being a car mechanic.
Worked in flood housing for a while; cousin and aunt diagnosed with Parkinson’s
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.
Very stressful job which caused serious sleep difficulties for over a year
Our son passed away in 2008, and she never recovered from that loss. She was highly stressed out over his death.
My brother hurt his neck at work and had 2 surgeries, but it had always hurt him.
He had chronic uti problems most of his life including bladder stones.
incorrectly diagnosed with PD in 2000
My mum had previously been diagnosed with breast cancer and had to undergo several rounds of chemo and radiotherapy
Teen years football head trauma. Exposure to farm chemicals while keeping bees. 6 years before diagnosis single head trauma.
Worked for years in an office that smelled of oil.
Diagnosed with spinal stenosis. Had laminectomy surgery - from which he was never the same. Simply deteriorated after surgery.
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.
Remote history of low back injury
Multiple Sclerosis
Sprayed insecticide in his teens
Mother passed away early
Was misdiagnosed with MS and Parkinson’s before MSA was honed in as the actual diagnosis by Univ. of Michigan neurologist (Dr. Shakkottai).
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.
She had none of the above.
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.
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)
Father had Parkinson’s.
He was a boxer for approx 4 years in late teens to early 20s

Symptoms:

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

Neuropathy (numbness, tingling in extremities)

54.5%

Excessive Neuro-Response (jumpy reflexes)

48.2%

Difficulty Walking

106

96.4%

Impaired Balance

105

95.5%

Fainting

41.8%

Unstable Blood Pressure

74.5%

Unstable Blood Sugar

12.7%

Dystonia (muscle spasms/ rigidity)

79.1%

Neuro-Motor Freeze (temporarily unable move at all)

57.3%

Myalgia (muscle pain)

57.3%

Tremors in Extremities

60%

Impaired Fine Motor Skills

100

90.9%

Impaired Gross Motor Skills

74.5%

Head Drooped Down or To One Side

75.5%

Dry Eyes

38.2%

Teary Eyes

34.5%

Eye Fatigue

46.4%

Optic Nerve Damage

7.3%

Impaired Auditory Discrimination

18.2%

Difficulty Swallowing- Aspirating Foods and Liquids

80.9%

Difficulty Swallowing-Choking/Blockage

60.9%

Excessive Coughing

22.7%

Dry Mouth

37.3%

Overly Moist Mouth

29.1%

Difficulty Breathing

40.9%

Difficulty Speaking

89.1%

Puffiness Under the Skin

18.2%

Digestive Disorder (diarrhea, constipation, etc.)

79.1%

Excessive Gas/Bloating

13.6%

Irregularity

46.4%

Impaired Bowel Control

57.3%

Impaired Bladder Control

87.3%

Impotence

51.8%

Chronic Fatigue

50%

Insomnia

38.2%

Impaired REM Sleep Cycle

43.6%

Confused Thought/Impaired Cognition

40.9%

Impaired Memory

28.2%

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

40%

Excessive Reaction to Stress

20.9%

Chronic Headaches

8.2%

Depression

60.9%

Anxiety

43.6%

Suicidal Ideation/Thoughts

7.3%

Attempt(s) at Suicide

Chills/Sweating/Overheating

45.5%

Rashes, Dry Skin, Itchiness

38.2%

Other

10.9%

If 'Other', please specify:

Teeth broke off
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 severe, 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
Severe hallucinations and violent dreams
None healing pressure sore
My Dad had very vivid dreams that he would yell and thrash the air.
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.
Suffered from edema in feet, lower legs and hands
I'm sure he was suffering a little depression. Body would fall to the right.
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.
Severe neuropathy, pain in legs and feet, “clawed” fingers on the hand
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.

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

Exposure to heat

45.5%

Stress

51.5%

Fatigue/exertion

70.7%

Lack of sleep

48.5%

Diet

19.2%

Medication

35.4%

Loud noise

18.2%

Bright or pulsing/flashing light

15.2%

Confusion

23.2%

Depression

38.4%

Other

6.1%

If 'Other', please specify:

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
UTIs were the most common cause of infection
He was first placed on Sinemet, unsure of spelling. He did not respond well at all to it
Crowds or people moving quickly around him threw his balance off.
The pain impacted all other symptoms.
Anytime my husband caught a cold or had even minor medical procedures, his symptoms would worsen, and he would decline.
Frequent UTIs

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

Diet

16.9%

Games, Puzzles, etc.

13%

Exercise/Physical Activity

31.2%

Physical Therapy/ Movement Therapy

48.1%

Swallow Therapy

20.8%

Acupuncture

2.6%

Light Therapy

5.2%

Speech Therapy

24.7%

Supplements (please describe below)

11.7%

Socialization

41.6%

Medication

49.4%

Other

13%

Please expand on your answer(s):

Midodrine 5mg for low blood pressure
High Sodium, lost liquids. Very Short periods of standing or walking.
As swallowing became more difficult a feeding peg was used
Also, laughter, watching funny videos
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
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.
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, citicoline, resveratrol, probiotic, NAC, magnesium, D-mannose; pyridostigmine, Sinemet, Crestor, Plavix, ranitidine, myrbetriq, zoloft. At one time he was prescribed Avodart.
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
Midodrine helped to assist with blood pressure drops for a period of time
Nothing heaped
Swimming pool therapy helped.
The speed of the condition was so rapid that the above were tried and did help but only for a short time.
Nothing seemed to help. Most content when watching tv
Would feel drained after any physical therapy
Having friends visit was important. Physio everyday to keep him motivated.
Nothing 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 wellbeing so much more pleasant.
Building up her muscles seemed to help
Anti-depressants helped with mood
Massage therapy
Watched tv continuously
She gained about 80-90 lbs. if eating a lot of sugar products.
Calm- supplement which helped tremors
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.
Not much of anything helped her symptoms, however she felt much better when massaging her muscles.
I made a dried fruit paste that helped with constipation. He also took MiraLAX.
Nothing helped. It just goes downhill day after day.
By utilizing multiple forms of therapy and keeping him social and active, my husband avoided hospitalization throughout the course of his disease.

Living Conditions and Care:

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

yes

87.2%

12.8%

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

individual had no caregiver

5.6%

caregiver was unable to meet the individual's needs

27.8%

individual/caregiver lacked financial resources needed for adequate care

111.1%

individual/caregiver lacked financial resources needed for adequate care

111.1%

individual/caregiver lacked access to knowledgeable medical care providers

50%

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

5.6%

individual refuses/refused assistance

16.7%

Other

5.6%

If 'Other', please explain:

Dr's uneducated on MSA
It's has become very difficult, with no one to help, do all the caregiving that is needed.
She was cared for by her granddaughter husband and daughter
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
Lack of social contacts.
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.
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.
Primary caregiver in denial, patient protecting her husband!
In the last stages of her MSA she was well cared for in a home
Took almost 7 years of symptoms get a diagnosis. His debt was so much he couldn’t afford supplemental care, better diet, etc.

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

yes

47.7%

52.3%

If 'Yes', please expand on your answer:

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.
All costs for assisted skilled and nursing care were out of pocket expenses.
Expense of supplies needed and not being able to hire outside help.
Cost of home care and bathroom renovations and equipment walker wheelchair bed rail etc
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.
Our son had to drop out of college temporarily to care for his father and his final year of life.
Due to being retirement age. Lack of access to mobility vehicles is an issue in that age though.
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.
Had to give up work and I had to go part time then stop work to care for my husband
Only as pertaining to his medications and the many doctors' visits.
Meds and sitters exhausted funds.
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 pounds 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.
Medical expenses
$2000 or more a month to have someone here while I was at work
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.
Loss of independence. A great deal of savings and income was spent on caregiving.
Patient was primary bread winner of household.
Disease forced retirement.
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 approved for disability she lived a mere three 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.
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 need for medical equipment reduced the budget and numerous trips to the ER added to the hardship.
Had 2 children still in school and I (his wife) had to stay home to care for him
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.
But her husband left her as he couldn’t cope with her illness which only added to her suffering
From 2 salaries to 1.
As his caregiver/ wife I was exhausted at times and could not afford someone to help me!
Loss of benefit and salary.
She was unable to get full disability benefits because it was determined to be an underlying medical issue
As her daughter and caregiver, I could no longer work. My husband had to hire to replace me in our small business.
My husband was primary wage earner. We still had a young child at home to support
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
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...
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.
Lack of. Income
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:)
Took all of our savings and for a year+ had a family help us with some bills.
It was extremely difficult obtaining any Medicare/ Medicaid / social security assistance, care facility acceptances, home health care, etc. because of her relatively young age and no health insurance.
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.
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.
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 take out multiple loans to pay for much of this, to the tune of about $75,000.

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

18.5%

Satisfied overall

49.4%

Dissatisfied overall

21%

Very dissatisfied

11.1%

You may expand your answer:

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 therapies to instruct them.
Our health insurance covered hospice at home, although we had to pay for part-time private nursing care out of our savings.
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.
We had Medicare Complete/United Healthcare as our insurance, with no difficulty going between our approved doctors and the University of Utah.
my father was on Medicare as well as Tricare from the military. thankfully, between the two, he was 100% covered for all medical issues
VA Atlanta really sad for a veteran.
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.
No insurance in the UK
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 without 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.
Medical staff not knowledgeable enough
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
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.
Canada's good health ins plan helped, but MSA was unknown and some financial aid not available.
Medical professionals in area had little or no knowledge if MSA
It took us far too long to get her qualified for disability. She had been out of work for two years before they would approve her then she only lived another three months past approval.
They did the best they could, however, not all doctors are/were familiar with MSA, so it was challenging at best.
No insurance cover
Long term care policy
A lot of out of pocket expenses or not covered.
I’m not sure
I only wish more providers were experienced with this disease. I became the teacher to most providers other than the neurologist.
No coverage for any help with caregiving
Insurance was over 1,000 a month.
Local medical professionals unfamiliar with MSA
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.
Didn’t qualify
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.
Private insurance through wife’s employer but doctors were pretty clueless regarding msa.
We had excellent care from our medical group doctors.

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

17.9%

Regular General Health Care/Screening/Services

7.7%

Medication

12.8%

Home Health Care/Assistance

64.1%

Assisted Living Facility Care

30.8%

Mental Health Therapy/Counseling

7.7%

Occupational Therapy

30.8%

Physical/Movement Therapy

30.8%

Speech Therapy

25.6%

Swallowing Assessment/Therapy-Choking Prevention

23.1%

Vision Assessment/Care

12.8%

Dental Care

23.1%

Wheelchair/Mobility Devices

41%

Hospital/Specialized Bed

12.8%

Dietary Needs/Supplements

17.9%

Diapers, Catheters and Related Items

71.8%

Diapers, Catheters and Related Items

71.8%

Other

2.6%

If 'Other', please explain:

Because we had gotten a walker with seat, in last five years, we were unable to get Medicare to pay for wheel chair.
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.
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.
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.
System different in the UK
Everything covered on the National Health Service
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.
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.
I had wished that his insurance or financial ability could have allowed for alternative therapies like acupuncture, chiropractic care, etc.

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

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

7.3%

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

44%

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

29.4%

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

12.8%

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

6.4%

Please feel free to expand on your answer:

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.
No one knows about MSA as it so rare Australia is so focused on Cancer patients
Doctors and medical staff don't know about MSA and how different care is for an MSA patient for each symptom.
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!
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.
Our neurologist at the U of U gave him excellent care. We were so grateful to be under her watchful eye.
while he was in the hospital, there wasn’t 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
He had so much difficulty with his longs at the end; too much slime he could not swallow away. In the hospital they could not help HIM anymore they said.
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.
Excellent care was limited by distance.
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.
Rick was in Hospice care at home for the last year of his life
Poor to fair in the beginning but with the right Dr that understood MSA and its symptoms we were told what to expect. She deteriorated rapidly and her Preferred Care Dr was very good at accessing her.
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 follow up from physicians.
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.
Patient & Caregiver did not want help as caregiver in denial.
His neurologist was awesome, he survived as long as he did because of her diligence
She was never actually diagnosed with MSA and it was never discussed. We were only told it was cerebellar atrophy
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.
his gp was more helpful and supportive than his neurologist
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.

Transition Issues

Please indicate the cause of his/her death:

Respiratory failure (stopped breathing)

53.4%

Respiratory infection (e.g.: pneumonia)

19.4%

Respiratory blockage (choking, obstruction)

6.8%

Heart attack

1.9%

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

Other

15.5%

If 'other', please state:

UTI infection to Sepsis
elected to stop eating 4 days prior to death
Aspiration pneumonia
Further complications such as epilepsy brain too fragile to recover
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.
Sepsis was mentioned nut not recorded.
also, appetite declined unable to eat anything a week prior to death. gave her water through a straw or moisture stick in mouth
Arizona
His body functions slowly gave out until he passed!
She fainted due to drop in blood pressure and never woke up. Cause of death was never determined
NSW
Undetermined
Pulmonary embolism
He kept getting UTIs and I think that ultimately led to his death

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

75%

Yes

25%

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

59%

Yes

41%

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

81.5%

yes

18.5%

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

New experiment drug Dallas TX Bone marrow. Germany
Astra Zeneca drug trial
Astra Zeneca trial AZD3241
No but always offered if there was any in Australia
Was examined twice at the national institutes of health movement disorders clinic.
Movement disorder specialists were carrying out research by plotting his condition and various stages of MSA
Through the University of Utah, he signed on anonymously for some type of research.
Hospitals in Leuven (Belgium) and Maastricht (Netherlands) and Germany.
One in Edinburgh. Others possibly but I don't know any details.
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 refused. Also offered himself to Bristol Souhmead Hospital. There was no take up of the offer.
Just the brain donation to the Mayo Clinic in Jacksonville, Florida.
Tried Mayo Clinic but was denied.
Provincial surveys we participated in, but very limited options.
Mayo Clinic Rochester but was not selected for trial
He was in a study at the Parkinson's Institute in Sunnyvale CA. I can't remember what the study was for exactly
Gainesville, Florida
mayo brain bank, Florida, cause of death confirmation
In Arizona the ALS foundation was checking to see if a particular protein would help her.
Never could find any he qualified for
Wanted to and was interviewed for stem cell study at Mayo Rochester Mn but not accepted
NYC; Astra-Zeneca trial of a drug in conjunction with PET scans
NYU rifampicin study
Dr. Shakkottai at the University of Michigan
University of Florida in Gainesville, Doctor McFarland.

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

24%

yes

76%

Please feel free to expand on your answer:

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.
My dad was a very religious man, but in saying that he didn't judge other people’s choices.
She very much wanted to be able to end her life and talked about its 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
This was not discussed.
Not sure.
Always said he wanted 'DO NOT RESUSCITATE tattooed on his forehead! As movement became more difficult, he said he had lost his chance to get to Dignitas.
My Dad fully supported patients right to die.
Not sure
We never discussed this
She denied all outside intervention stating she knew she would not see a cure for her disease because it was husky unknown and did not want to prolong her families suffering from watching 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.
Not if this means euthanasia
He did not want or receive any heroic measures to prolong his life.
She always said, "where there is life there is a reason to live."
I’m not sure. Never discussed
I am unsure.
D n r.
He did not want to be intubated or have a stomach tube and requested DNR.

Thoughts and Memories

Please share any observations that might be helpful to others coping with Multiple System Atrophy:

Make sure you have a Dr. Who specializes in MSA.
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, toileting, needed to be spoon-fed, required pureed food, unable to move (essentially paralyzed), unable to speak.
The respiratory system becomes very fragile, it's recommended to give special attention to it since the begging with respiratory therapy.
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.
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.
Pray and rediscover your relationship with God. Not being afraid of death makes everything less stressful.
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)
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.
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.
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.
since there is no cure, i would suggest making the patient as comfortable as possible, but also make sure they get out of the house or hospital at least twice a week.
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
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 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.
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.
It is crucial for patient to have caretaker/spouse to be stable.
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 recognized 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.'
Adapt and continue to find joy in life no matter how difficult the MSA journey becomes
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.
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.
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
Fight for the care your loved one deserves. Because the disease is fatal remember hospice is available and is quite helpful
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.
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.
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
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.
Much more information for doctor and carers
MSA online support group helpful. If possible, in person support better. Always ask questions. Caregiver support essential.
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
Ian a registered nurse who could describe symptoms and observations
Take each day as it comes, make peace within yourself & with your loved ones, enjoy the good days & tackle the bad one’s head on. You are never alone.
Access to care in the home would have been so much better than nursing homes and hospitals.
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 not even go to the grocery store with her significant other even because she did not want to let other people see her wearing a diaper because she didmt want to be remembered that way. Please watch for depression as it comes up quicker than you realize.
Don't envy anybody that has to go through this horrible disease or anyone who has to care for someone with msa
Take each day at a time. You will know when the right time is to go to the next step in this horrible disease
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.
Get support early. Msa is a rollercoaster. Physio is vital. As is speech therapy. Get to support.
My husband had all the symptoms of MSA and nothing really worked it was just a slow 5 years of deterioration.
MSA needs to be on everyone's radar. It is a horribly scary condition that medical professionals MUST learn about and understand thoroughly.
First symptoms of slurred speech and loosing balance when walking
As a caregiver be loving and patient to the person suffering from MSA
Tried stem cell in the Bahamas. Actually, made him worse, I think!
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 memories are of lots of laughter.
The acceptance of there really is no cure. It is a horrific disease.
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!
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.
Physical therapy needs to be on-going but as soon as progress is stopped funding for PT stops
Take picture weekly. Things change and you don’t realize how extreme the changes are from you week to week.
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 though 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.
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.
This is your life now. Try to make the best of it in whatever way you can.
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
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.
Days may be dramatically different
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.
Horrible to watch.
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.
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.
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.
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.
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.
One day at a time
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.
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 it 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.
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.
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.

Please feel free to share any memories, thoughts or comments about the individual lost to MSA:

She didn't like putting the burden on her husband but everyone else She lost all her so call friends
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 Hospitals. 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.
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.
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.
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.
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.
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.
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!
Lovely, lovely man who fought valiantly against muscle loss/deterioration. Kept smiling until the very end.
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.
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
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
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.
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
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.
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.
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.
He fought until his last breath to stay alive.
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 Anniversary next year. I failed.
Jerry loved life even though he become extremely functionally impaired. He laughed every day and just enjoyed the small moments of life.
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 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!
It was horrible to lose my mom to MSA C. We graduated together with our master’s degrees in 2005. We had no idea then how our lives would change due to MSA.
My memory of my brother was looking in his eyes and still seeing the kind and loving person that he was
Rick was always the guy that had everyone laughing. I did something every day 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
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 every day. Love your loved ones because tomorrow is not promised.
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.
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.
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.
MSA is a horrible debilitating condition that takes away the person you love
He was accepting and lived life as best he could. He made it easy for me his wife and caregiver.
It is incredibly hard on all. I don't know how we got thru those years.
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, willful strength or her wonderful sense humor. She will always be my lovely sister, my hero!
By the last year of her life, my mother was exhausted by the disease and was ready to give up the fight.
She taught us all how to fight when she had the energy to. She taught us to live everyday lime it was your last, and most importantly to tell the ones you love that you lose 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 what going on with your life that was my moms’ final wishes that we not stop advocating for future families.
Took almost 1 year to be diagnosed with msa then everything 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
The night before he passed away, he watched Heaven is for real which is very comforting to me maybe it helped him on his finally journey home
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.
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.
because of MSA, retirement never happened. we were never able to take long awaited trips and vacations.
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.
I cannot at this time. It was such a horrific thing to watch
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.
Terrible disease. I hate it.
He was a real trooper!
My mother was a strong, independent single mother. All of her strength was stripped due to MSA.
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
My wife decided early on that she did not want lifesaving 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 to 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.
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.
Ron was and is the love of my life! He always thought about others and cared deeply for his family. Forever honey
We tried everything to help and found exercise a great benefit and continued to do as many things as possible
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.
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.
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.
This is a horrendous disease that no one should suffer with. It's like ALS, MS, and Parkinson's all rolled up in one.
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.
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.
She never complained
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.
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.
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.
The most amazing person that I have ever known.... gentle...
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 were 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.
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.

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

Depressed, angry, creative, father, tortured
Dad funny role model kind
Frustrated at times
Beautiful free-spirited best friend caring giving
Caring, Loving, Courageous, Family Man
kind funny generous caring introspective
strong patient determined loving missed
Beautiful, strong, warrior, happy and the best mother ever.
Weak, sudden drops in Blood Pressure, constipation, passing out.
Strong honest reliable caring friend
Blessing Angel Best Peaceful MSA-free
Brilliant, thoughtful, high sense of integrity, clever, artistic
Active Caring Fit Healthy Hard working
Generous-competent-knowledgeable-short tempered-liked food
Brave, fun, a friend, loved and missed
tenacious kind generous thoughtful romantic
Unselfish Brave Wise Funny Considerate
Loving funny handsome loyal friend
Strong willed Preserve Anxious Loving Determined
Loyal Loving Courageous Brave Determined
strong, determined, loving, disciplined, humble
Intelligent, gentle, patient, proud, loving.
Brave Strong Positive Social Sweet
Caring, funny, thinking of others before herself,
Hero Father Clever Kind Supportive
Brave Loving Talented Mom Nana
Kind, steady, loving, strong, active.
Intelligent Brave Uncomplaining Amazing Loving
Happy Accepting Thankful Loving Strong
Loving, caring, funny,nurturing,strong.
Loving, strong, smart, driven, and beautiful.
Lovable, loving, talented, strong, strong willed
LOVING TENDER KIND FUNNY LOYAL
Brave, Independent, loving, kind, and stubborn (set in her ways!)
Loving, stoic, intelligent, generous and faithful.
Patient, tolerant, angry, frightened, disciplined
Brave - kind - loving - generous - indomitable
Intelligent, curious, spiritual, sense of humor, devoted family man
Beautiful caring loving funny intelligent
Worker, focused, strong, intelligent, outdoorsman
Thoughtful, kind, resilient, funny, loving. He never stopped being a wonderful man.
Strong, inspirational, selfless, loving, amazing.
Brave, brave, brave, brave, and brave.
Strong, stubborn, love, fighter, mom
Handsome loving intelligent kind giving
Happy fun-loving romantic man
Darling, Love, Friend, Home, Rock
Kind. Patient. Great person. Mentor. Strong.
Funny loving caring hard working.
sensitive, loving, talented, generous, wonderful wife
Smart, caring, beautiful, humble, and dedicated.
Funny, kind, loving, wonderful grandfather/husband, enjoyed life.
Strong, funny, smart, giving, loving
At the time mad, depressed, lonely, tired and stuck!
My beautiful caring loving sister
Willing to live, gentle, positive, Good person, patient, the Best Mother anyone could ever have, loveable
Loving, strong, funny, good, big hearted!
Smart, kind, never complained, generous, southern gentleman
Kind Loving Brave Generous
Caring Strong Independent Strong-willed Loving
STRONG Caring Selfless Respected Responsible
Intelligent. Loving. Kind. Loyal. Integrity
Caring, devoted, loving, head strong, all about her children and grand children
Compassionate, good person, empathetic, cared for everyone except herself, best mom on the world
Strong, caring, loving,positive,handsome
Kind Loving Gentle Loyal Smart
Loving, caring, supportive, opinionated, stern
Strong, resourceful, brave, resilient, beautiful
Caring, Strong, Brave, Pragmatic, Loving
Beautiful, Amazing, Caring, Loyal and My Best Friend
Intelligent. Inquisitive. Independent. Naturalistically. Loving.
Never negative, accepted with grace, quiet, large appetite, the joy of laughter
Boundless strength of inner energy
loving, courageous, faith-filled, open-minded, builder of bridges, not walls
Strong willed, strong desire to live. She loved the Lord with all her heart.
Kind, loving, thoughtful, peacemaker, patient
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!
Strong, compassionate, understanding, inquisitive and positive
The love of my life.
Stoic, strong, good humored, uncomplaining, wonderful.
Volunteer, thoughtful, quiet, contemplative, and caring
A man of God
Gentle....patient...understanding...intelligent...people person
Brave (in the face of adversity) Patient Humorous Irreverent Accepting
Strong, passionate, loyal, kind, talented.
Funny, generous, kind, loving, strong.
Smart, funny, loved, witty and blessed

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

Same
Fighter
Loveable kind spiritual thankful afraid
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.
Stronger, Fighter, Warrior, Winner and Grandma.
Weak upon standing, dizzy and passing out in seconds, constipation.
Dedicated confident intelligent friendly caring
Independent Strong Helpful Loving Blessed
Honorable, funny, fair, collegial, warm
Organizer Family loving Caring
Faithful, determined, loyal, worker, content
Loving funny energetic cheeky loyal
Determined Strong Loving Happy Hopeful
Frustrated Puzzled (at how he had this condition) Resigned
he wouldn't
Loyal, strong, reliable, disciplined
Father Intelligent Kind Happy Hairy
Loyal Happy Shy Proud Loved
Ordinary Boring Stupid Nuisance Different
Realist Happy Hard Working Determined Thoughtful
Funny, strong, loving,friendly,outdoorsy.
Goal oriented, driven, mom, mema, great mema
LOVING FUNNY LOYAL HARD-WORKING HELPFUL
Busy, Independent, Truthful, Dependable, Kind
Loyal, creative, loving, patriotic and faithful
Disciplined, loving, giving, frightened, angry
Spiritual, concern re underprivileged, loved medicine, traveler, loving husband, father.
Cook cleaner and bottle washer
Focused, worker, thinker, strong, outdoorsman
He always said he was a lucky man. He said Michael J. Fox stole the title of his book from him. He would have said also that he was loved and fulfilled
Determined, outgoing, stubborn, great sense of humor, scared.
Independent, patient, kind, gentle, tired
mom, alone, depressed, loved, painter
Not sure
Handsome hunter and fishing man
Good, Friendly, Husband, Daddy, Grandpa
He was modest. He always said you're born to die. We're only passing through this life.
Positive have a go at everything
caring, talented, misunderstood,
After MSA: Depressed, anxious, frustrated, angry, useless.
Outgoing, funny, caring, energetic
Fun loving, witty, caring
Thankful, gentle, positive, patient, loveable
Loved his family, intelligent, hard worker, strong faith, great dancer
Philanthropist, athlete, competitor, husband, grandfather
Funny Loving
Big-hearted Strong Hard-headed Outgoing Fun
Simple Hardworking Busy Blessed Plain
Hard decision making, want to help people, loves most
Scared, lost,surprised,unhappy,afraid.
Organized, strict, professional, loving, dedicated.
Afraid, depressed, grateful,
Caring, Strong, Pragmatic, Loving, Creative
Independent. Perfectionist. Naturalist. Rigid. Loving
Sensitive, not wanting to impose on anyone, recluse, conscientious of what others thought about her, woman of faith.
Lover of life
loving, faithful, open-minded, scholarly, kind
Christian, American, wife, Mother, Grandmother
Ordinary, quiet, boring, kind, respectful
Loving, faithful, questioning why, anxious, and a Christian
Bull headed, compassionate, grandmother, good friend,
Lived a full life in 43 years.
I really cannot answer that
Stubborn, funny, determined, adventurous, loving
Strong, loyal, trustworthy, dependable, loving.
Same as mine :)

Your comments:

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

Thank you for allowing survivors to participate in your survey. I only wish we had discovered your FB page before Allan passed. It would have meant so much to him to have "met" someone who was also journeying with MSA.
Bill, thank you so much for developing this survey. I discovered your fb page after Allan passed. I only wish we had found it earlier, so he didn't have to feel as if he was alone in his journey. Wishing you more good days than bad and will continue to keep you in my thoughts and prayers.
I'm so happy and hopeful to now see that MSA is getting more widely covered and that research is intensifying. Hopefully something will be found soon that will aid others.
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.
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 realize what was happening.
Thank you for this survey and thank you for asking what my Dads name was. Tina Stiner loving daughter of Robert Litts 03/25/2012.
I wish there were more info on MSA (Shy Dragers) available to medical personnel and families of MSA patients. Glad to see this survey.
Thank you for the opportunity to look back on the good healthy times as well as our MSA journey. Suggest everyone involved guide others to the lifeline of MSA online sites, so important!
We enjoyed each other until the end
More drs need to know about MSA.
I hope that there will be more studies and new meds for MSA and cures!
I have received a couple of phone calls from newly diagnosed patients with MSA. I love being able to help caregivers and patients with my experience. I would love to have more patients and caregivers receive this information somehow. It would have meant the world to me, I had no one.
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.
Excellent survey!
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.
Thanks, Bill, for continuing your quest to help beat the Beast. You are truly an MSA warrior!
I have a real hatred for this scourge. My hope is that somehow Lisa’s tragedy may someday, somehow, help with its demise.
Thank you for providing this survey. May a cure for this disease be found.
If it can help anyone, I am happy
Thank you for allowing me to share our experiences with this horrible disease and how it has affected our lives.
You might include asking why the individual did not donate their brain. Kenney wanted to donate his brain to the Mayo Clinic, we filled out the paperwork, but we were unable to locate a pathologist willing to remove his brain for the donation.

Thank you for taking the time to complete this data*MSA Survey. Your responses will be shared with other individuals affected by MSA, their caregivers and their families - as well as research and educational centers dedicated to Multiple System Atrophy.

END

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Survey Report Representing Individuals Lost to MSADate of Report: 01/01/2019Number of Participants: 131

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Survey Report Representing Individuals Lost to MSA
Date of Report: 01/01/2019
Number of Participants: 131