Summary:

The dataMSA Survey for Multiple System Atrophy was launched in March 2014 and was closed to participation in March 2019. However, a group of individuals expressed a desire to participate after the survey closed. Therefore, the survey was reopened for a 1-year extension; 68 individuals participated. The purpose of the Survey for Multiple System Atrophy was to collect data and information from individuals, caregivers and loved ones of those lost to MSA for the purpose of promoting research, raising awareness and educating health care providers.

Who is completing this survey? 

Person living with MSA

37

Caregiver/loved one of an individual currently living with MSA

25

Caregiver/loved one of an individual lost to MSA

6

Background Information:

In which country/region does/did the individual reside?

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

5

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

4

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

6

Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, N Carolina, S Carolina, Tennessee

7

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

5

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

4

Region VII: Iowa, Kansas, Missouri, Nebraska

5

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

0

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

3

Region X: Alaska, Idaho, Oregon, Washington

6

Region XI: Canada

4

Region XII: Central America

1

Region XIII: Asia

1

Region XIV: Africa

1

Region XV: South America

0

Region XVI: Antarctica

0

Region XVII: Europe

6

Region XVIII: Australia (continent), New Zealand

10

What is/was the individual's gender?

male

38

female

30

Diagnosis Data:

At what age was the individual diagnosed with MSA?

20-25

1

26-30

0

31-35

1

36-40

0

41-45

0

46-50

3

51-55

11

56-60

16

61-65

21

66-70

8

71-75

3

76-80

3

80 or older

1

In what year was the individual diagnosed with MSA?

prior to 2003

2

2003-2005

0

2006-2008

0

2009-2011

2

2012-2014

2

20015-2017

18

2018-2020

38

With which type of MSA was the individual diagnosed?

MSAc

47

MSAp

12

uncertain

9

How long did it take for the individual to secure a formal diagnosis of MSA?

0-6 months

9

6-12 months

14

12-18 months

9

18-24 months

12

24 or more months

24

How many neurologists did the individual consult during the diagnosis process?

1

7

2

26

3

21

4

6

5 or more

8

I have not been seen by a neurologist

0

If the individual's diagnosis of MSA was not administered by a neurologist, please state how the diagnosis was formed:

• It was given by several doctors at Mayo clinic Fl and also by UF Gainesville
• MRI & symptoms
• Mad-NDA-p
• N/A
• OH
• Paper quiz by neurologist, mri, sleep dr., autonomic test, ent testing, observation
• SC
• I’m administered by a neurologist
• na
• neurologist

Was the individual diagnosed with any condition(s)/illness(es) prior to receiving a diagnosis of MSA?

no

29

yes

38

If the individual was diagnosed with conditions/illnesses prior to receiving a diagnosis of MSA please state the condition(s)/illness(es):

• Parkinson’s
• Cerebellar atrophy
• Parkinson's
• Ataxic Gait
• autonomic neurotrophy
• We found that he also has Simmering Myeloma
• Primary lateral sclerosis
• Malaria
• Parkinsonism
• Cerebellum atrophy
• SCA, Ankylosing Spondylitis
• Parkinson's
• Arthritis
• Cerebellar atrophy
• Possible Parkinson’s, high/low blood pressure, syncope, sleep apnea, asthma 
• Imbalance due to blindness RP or pressure from benign brain tumor fibromyalgia
• Parkinson’s disease Addison disease
• Fibromyalgia High Blood Pressure Sjogren’s
• Movement Disorder, then Parkinson's Disease
• Cerebellar ataxia
• POTS, CFIDS
• Only high cholesterol. Had taken Lipitor for 15 years when dx with MSA.
• FXTAS/cerebellar ataxia
• Parkinsons
• Parkinson’s disease
• Spinocerebellar ataxia type?
• Parkinson's Disease
• Afib, Heart Failure
• Parkinsons Disease
• hydrocephalus by gerontologist (CT/MRI/spinal tap)
• Parkinsons Disease, chronic obstructive pulmonary disease, sleep apnea, asthma, under active thyroid, spinal arthritis, arthritis, cardiac dysrhythmia, hypotension, borderline diabetic
• Amyotrophic lateral sclerosis, Parkinson plus syndrome, cervical hernia, depression, fatigue, Parkinsonism due to Fluoxetine, Menopause
• Autonomic disfunction, orthostatic hypotension, thyroid disease, Cowden disease, prostate cancer, lung cancer, chronic headaches, chronic body pain, sleep apnea, acting out dreams,
• no
• Hypertension and Barrett’s Esophagus
• Cerebellum ataxia
•  

Symptoms:

At what age did the individual first notice symptoms, later attributed to MSA?

20-25

1

26-30

0

31-35

1

36-40

0

41-45

1

46-50

9

51-55

21

56-60

3

61-65

12

66-70

8

71-75

0

76-80

1

80 or older

1

Please indicate the first/earliest symptom(s), which caused the individual to seek diagnosis: 

Neuropathy (numbness, tingling in extremities)
 

15

Excessive Neuro-Response (jumpy reflexes)

8

Difficulty Walking

30

Impaired Balance

51

Fainting

6

Falling

22

Unstable Blood Pressure

22

Dystonia (muscle spasms/ rigidity)

8

Neuro-Motor Freeze (temporarily unable to move at all)

3

Myalgia (muscle pain)

5

Tremors in Extremities

18

Impaired Fine Motor Skills

19

Head Droops Down or To One Side

5

Dry Eyes

8

Teary Eyes

2

Impaired Vision

9

Eye Fatigue

7

Optic Nerve Damage

0

Difficulty Swallowing/Choking

7

Excessive Coughing

3

Dry Mouth

5

Overly Moist Mouth

1

Difficulty Breathing

5

Impaired Speech

18

Digestive Disorder (diarrhea, constipation)

13

Excessive Gas/Bloating

4

Irregularity

3

Impaired Bowel Control

6

Impaired Bladder Control

16

Impotence

9

Chronic Fatigue

14

Insomnia

5

Impaired REM Sleep Cycle

18

Confused Thought/Cognition

7

Impaired Memory - Short, Intermediate, Long Term

8

Inappropriate Emotions (crying, anger, etc.)

8

Excessive Reaction to Minor Stressors

3

Chronic Headaches

5

Depression

11

Anxiety

7

Suicidal Ideation/Thoughts

3

Attempt(s) at Suicide

0

Chills/Sweating/Overheating

6

Rashes, Dry Skin, Itchiness

7

Puffiness Under the Skin

3

difficult to speak and ataxia

1

Micrographic

1

Excessive snoring for 2 years prior to dx

1

Please indicate all symptom(s) which the individual experiences/experienced since receiving a diagnosis of MSA:

 Neuropathy (numbness, tingling in extremities)

32

Excessive Neuro-Response (jumpy reflexes)

30

Difficulty Walking

59

Impaired Balance

65

Fainting

18

Falling

52

Unstable Blood Pressure

52

Dystonia (muscle spasms/ rigidity)

32

Neuro-Motor Freeze (temporarily unable move at all)

23

Myalgia (muscle pain)

30

Tremors in Extremities

33

Impaired Fine Motor Skills

52

Head Droops Down or To One Side

24

Dry Eyes

18

Teary Eyes

17

Impaired Vision

25

Eye Fatigue

24

Optic Nerve Damage

1

Difficulty Swallowing/Choking

37

Excessive Coughing

16

Dry Mouth

13

Overly Moist Mouth

17

Difficulty Breathing

18

Impaired Speech

52

Digestive Disorder (diarrhea, constipation)

46

Excessive Gas/Bloating

14

Irregularity

21

Impaired Bowel Control

28

Impaired Bladder Control

47

Impotence

26

Chronic Fatigue

37

Insomnia

19

Impaired REM Sleep Cycle

33

Confused Thought/Cognition

21

Impaired Memory - Short, Intermediate, Long Term

27

Inappropriate Emotions (crying, anger, etc.)

26

Excessive Reaction to Minor Stressors

17

Chronic Headaches

14

Depression

32

Anxiety

31

Suicidal Ideation/Thoughts

6

Attempt(s) at Suicide

1

Chills/Sweating/Overheating

27

Rashes, Dry Skin, Itchiness

26

Puffiness Under the Skin

7

Bladder retention-straight cath; severe dizziness

1

Please indicate events which cause/caused the individual's MSA symptoms to worsen?

None

8

Exposure to heat

30

Stress

36

Fatigue/exertion

46

Lack of sleep

34

Diet

8

Medication

7

Loud noise

17

Bright or pulsing/flashing light

14

Confusion

11

Depression

18

Please list other events which cause/caused the individual's symptoms to worsen

• Alcohol

1

• Falling

1

• Gastroparesis

1

• Hunger

1

• Just progressively worsened , esp. During the last year of life

1

• Mention of her son

1

• Movements

1

• N/A

1

• Not enough rem sleep

1

• Panic attacks, fear of going out, socialization

1

• Pt. Had a tracheostomy and after surgery has become much weaker. Now is walk with assist of gait belt and one persons

1

• Tired or stressed emotionally.

1

• Too much stimulation

3

• UTI Atrial fibrillation

1

• Unknown

1

• Unsure

1

• Walking, gardening

1

• changes in life style around covid 19, other peoples stress

1

• disease progression

1

• the cool cause bed symptoms

1

• trying to multitask

1

Are/Were any cycles observed with regard to periods of worsening of the individual's symptoms?

no

47

yes

19

If cycles are/were observed with regard to worsening of the individual's symptoms, on average, what was the frequency of the cycles?

approximately twice a week

4

approximately once a week

3

approximately twice a month

5

approximately once a month

5

less frequently than once a month

5

If cycles are/were observed with regard to worsening of the individual's symptoms, what was the duration on the cycle?

less than 6 hours

4

6-12 hours

3

13-18 hours

1

19-24 hours

2

one to two days

8

more than two full days

7

Are/Were there any strategies/interventions that help(ed) reduce the individual's symptoms?

no

21

yes

39

If yes, what are/were the strategies/interventions that help(ed) reduce the individual's symptoms?

 Diet

14

Exercise/Physical Activity

23

Physical Therapy/ Movement Therapy

18

Acupuncture

3

Light Therapy

2

Speech Therapy

15

Supplements (please describe below)

7

Socialization

9

Games, Puzzles, etc.

5

Please list other strategies/interventions that may help/have helped reduce the individual's symptoms:

• no salt and no red meat
• Acupuncture helped maintain blood pressure for about 1 year then stopped helping
• Low dose naltrexone at night Skullcap tincture for tremor
• Ubiquinol, bydureon,cbd oil, glutathione
• Sleep and rest
• Lifting her legs and putting her head down.
• Seeing grandchildren
• Exercise
• Sleeping, changing dosages of blood pressure meds, to lower or raise bp, positioning bed higher or lower.
• Tropism Chloride for urinary urgency
• No fluids, no exercise, doing nothing
• Better understanding of the disease
• LlLyrica helped the burning of neuropathy in extremities
• Laying down to reduce dizziness helped in the beginning 
• Riding my horse - relaxes muscles and emotions. Keep moving and doing something creative,, get enough rest
• Family visits , rest
• Sleep.
• resting as needed
• I work more
• Activity redirect when stuck or frozen
• music combined with movement therapy - stationary outside activities
• sleep
• IVig
•  

Medications:

Has/Had the individual regularly taken any prescription medication prior to or after diagnosis of MSA?

no

14

yes

54

If yes, please list the prescription medication(s) taken regularly by the individual:

• Levothyroxine, midodrine, sertraline, clonazepam
• after diagnosis, madopar 3x a day, complex vitamins 1x day
• Effient, pravastatin,sertraline,Lisiniprol all prior due to heart attack at age 38. Fludrocortisone started November 2019
• Carbidopa levodopa
• Iron Atenolol
• Florine mirtazapine amiodarone
• Midodrine, florneff, baclofen
• Betmiga, bydureon
• MiraLAX, alfusin, coQ 10, riluzole. Participating in MSTAR study, don’t know if he’s getting drug or placebo
• Unsure of names
• Paracetamol Gabapentin 4-Aminopyridin Melatonin Ovesterin Antihistamine
• Levocarb ; entacopone; pramipexole; fluorine; myrbetriq; zopiclone;
• Fervent abd Sereflo for COPD
• Atenolol, HCTZ, Norvasc
• Levodopa
• Ubiquinol, exendrin, glutathione
• Biohaven stuffy drug
• Sinemet and midodrine
• Northera, clonidine, Xarelto Zoloft
• Zyrtec
• Clonazepam for RBD (effective), Tropsium Chloride, Remeron for anxiety/depression
• Cymbalta tramadol amlodipine
• Amantidine
• FlorineF, Gutron
• Blood pressure medication
• Bystolic Nifedipine Sertraline Mirtazapine Clorthalidone Pravastatin Lyrica
• Tamulosin
• Sinemet
• Steroids. Now starting IVig
• Too many to list
• Hiprex, amitriptyline, madopar
• Procrit, Clonazepam, Beta Blockers
• Took Lipitor prior to dx, not now. On hospice currently. Tried carbadopa/levodopa without success. Northern helped some to regulate BP for a time. No longer takes. Takes Flexeril, macro-bid, IBU and occasionally a stronger pain med.
• FlorineF, Lyrica, Midodrine, Clonazepam
• amitiza/linzess/Lexapro/vit D3/multivitamin/Nexium/klonopin/atropine drops SL/Advil PM
• Kinson
• midodrine
• Quinidine/Robitussin tablets = Nudexta,
• Hiprex for bladder, metformin, simvastatin, Lasix, potassium, meloxicam
• Rytary, Fludrocortisone, Midodrine, Gabapentin
• Carbo levodopa
• omeprazole, Xarelto, Prozac
• Gabapentin, ropinirole, Celexa, sucralfate, pantoprazole, fioricet, tramadol, Ambien
• Levodopa/Carbidopa; sertraline; Florinef
• Rytary. Mirapex. Nudexta. Klonopin. Sinemet. Strattara. Botox for my bladder.
• Thyroxine, frusemide, levodopa, antidepressants, paracetamol, citalopram, inhalers (including corticosteroids), amoxicillin, statins, morphine patches.
• Levodopa, Nakom, clonazepam, epsilon 25 mg, Comenter 1/4, dextrometorphan, Wellbutrin, Diovan, Lipitor, venlafaxine
• Midodrine. Gabapentin,
• Lisinopril, HCTZ, omeprazole, ibuprofen, Vit D,
• Promethazine. Midodrine thyroid meds Cymbalta and Norvasc at bedtime for the supine hypertension

Has/Had the individual regularly taken any over-the-counter medication(s) prior to or after diagnosis of MSA?

No

32

Yes

34

If yes, please list the over-the-counter medication(s) taken regularly by the individual:

• Vitamin d, multivitamins probiotic , omegas
• Aspirin 81mg, and vitamin C, D, before. Vitamin B complex after.
• 80 mg Aspirin
• Betmiga
• Vitamins, and coQ 10,
• Unsure
• Magnesium glycinate
• Vitamin
• Aspirin, vitamin e
• Liquid magnesium; Omega 3fish oil, co enzyme q10, methyl aide, acetyl glutathione
• Ibuprofen
• Cbd oil, glutathione, multi vitamins
• Tylenol
• Claritin D/Flonase
• Aspirin laxative vitamin D-3 multivitamins folic acid
• Zyrtec
• Miramax, Sarna
• probenecid
• Tylenol Ibuprofen Baby Aspirin Multivitamin
• Allegra D
• Ibuprofen
• N/A
• ibuprofen
• Vit B1, C, Potassium, 81mg aspirin
• ASA, vitamin c, Claritin, Nasacort, Cranberry, SYSTANE eye drops, MiraLAX
• Laxatives
• Tylenol xstrength
• Excedrin, Benadryl
• Tylenol Extra strength
• multiple supplements including CoQ10
• Paracetamol, lactulose, fibro gel
• Pain meds, constipation meds, magnesium tablets, sleeping aids
• Omeprazole, ibuprofen, Zyrtec
• Aleve
• Just vitamins

Neurological Care:

On average, what is/was the frequency of the individual's neurological care?

less than once a year

3

once a year

8

twice a year

22

three or more times a year

29

no neurological care since diagnosis

6

What is/was the nature of the neurological care the individual receives/received during these visits?

neurological consultation

49

neurological assessment

49

MRI

32

CAT scan

13

PET Scan

1

If 'Other" - please state:

• We see neuro every 8-12 weeks for MSTAR clinical study visits
• Spinal fluid test
• Gynecologist Urologist
• Medication management; community support services
• spinal tap
• No care - had cognitive test pre diagnosis.
• Neuro psychiatrist
• Botox shots for pain and drooling

Has/Had the individual participated in clinical research regarding MSA?

no

59

yes

9

If the individual participated in clinical research, which agency/group oversaw the study?

 Bio Haven

1
Biohaven

3

DOD

1

Mass General Hospital

1

NYU/NIH & NYU/Biohaven

1

Surveys

1

Sydney brain clinic

1

Ucla

1

 If the individual participated in clinical research, what was the purpose of the study?

• Slow down progression
• Test a drug to see if it slows progression
• To donate my brain
• No
• To slow progression
• Slow progression
• Impact of the bowel
• Slow the symptoms

If the individual participated in clinical research, what were the outcomes of the study?

• Study still going
• Study currently underway
• I was accepted as a brain donator
• No
• Currently enrolled no results yet
• Still ongoing
• IDK
• No change

If the individual participated in clinical research, please describe the individual's satisfaction with the study experience: 

• We are thrilled with the care he is receiving during the study

1

• Highly satisfied

1

• I haven’t received a report back Accepted as a brain donator Waiting for a

1

• In progress

1

• No

1

• Not much

1

• Satisfied

3

With regard to possible MSA-contributing factors, which of the following did the individual experience prior to receiving a diagnosis of MSA?

Prior single traumatic brain injury

2

Prior multiple traumatic brain injuries

1

Prior single head trauma resulting in concussion

2

Prior multiple head traumas resulting in concussion

6

Prior history of chronic headaches

111

Prior neck injury

9

Prior multiple neck injuries

2

Prior exposure to chemicals/toxins

12

Prior exposure to high levels of stress

21

Prior diagnosis of Post Traumatic Stress Disorder

1

Prior diagnosis of Seizure Disorder

0

Family history of Alzheimer's Disease

4

Family history of Parkinson's Disease

9

Family history of Multiple Sclerosis

1

None of the above

23

Please tell more about the contributing factors stated above:

• Tree limb fell on head walking in woods; owned auto repair station and always handling auto chemicals and washing auto parts in gas; and garden pesticides always being used by gardener around area where water well existed even after asking not to.
• Was born in Vietnam in a community sprayed with agent orange during Vietnam War
• 2 car accidents
• Believed to have been exposed as a child to a now illegal Pesticide. Worked at airport for 30+ years. Alzheimer’s mother and sister. Parkinson’s sister.
• Five people died in a short time including my partner I was caring for three of them Not at once
• Family history of ataxia and leukodystrophy
• Cervical Laminectomy, C3-C7 , multiple concussions
• Headaches all my life
• 2x car accidents air bags deployed and fall Hit back of head on concrete
• Had neck injury years prior in car accident.
• Symptoms began not long after the traumatic passing of her brother
• Wacked really hard by 6 x 6 beam of wood into my right ear. Ended up with rib pain
• Mother's sister died with Parkinson's
• Just the leg weakness
• Worked as Volvo service manager
• Used chlordane, 2-4-t, worked in chemical and biological laboratories
• The high level of stress comes from a divorce less then a year before becoming sick. I don't see it mentioned in any of the above but I worked at WDW for five years resulting in my exposure to illnesses from around the world.
• He used extra strength Round Up at lake home to keep driveway weed free. I always worried about this. He was a CPA by occupation.
• Started a new road construction job
• cervical tumor ependymoma resection / drainage of syrinx
• head aches were associated with chronic sinusitis
• My mom had a very traumatic and stressful childhood.
• Altitude disease or cerebral edema due to travelling up a mountain too quickly
• Vehicle accident and a fall from a ladder resulting in head trauma and a drug addiction of a chlld for past-15 years
• father of patient had Parkinson (78) and later on Alzheimer's (82). Patient himself had bacterial meningitis at age 10
• Was a teacher working in difficult school with multiple disruptive kids resulting in work related stress and depression. Protracted court case involving cowboy builder resulting in serious financial consequences
• Sun exposure, rural area
• High school football. Spine surgery , grandmother had Alzheimer’s
• mother dx with Parkinson

In the past/last year, how would you describe the rate of progression of the individual's MSA illness?

(1) very few signs of any progression in the past/last year

0

(2) some subtle signs of progression in the past/last year

7

(3) definite signs of progression in the past/last year

39

(4) rapid progression in the past/last year

21

Please add any comments related the individual's rate of progression in the past/last year:

• Notice after year 1 he started progressing faster
• the symptoms increased
• Jan 2018 we bought cane to aid with unsteadiness. Mostly that was problem we dealt with. March 2019 he walks very little due to severe dizziness, inability to control legs well enough, leg fatigue, and can’t regulate low blood pressure to avoid falls. Uses scooter. PT didn’t want to continue due to low bp. He now has phlegm at night. He chokes when swallowing if not careful. Constipation worse. Insomnia. Compression socks, salt tabs and fludrocortisone just to try and raise bp. Slurring speech. More bad days than good.
• Swallowing Choking UTI’s balance. Wheelchair dependent.
• June 2019 we moved to new house, he drove and carried boxes, loaded truck, no falls. January 2020 on disability and using walker, not driving, cannot carry anything and walk at same time, had at least 6 falls.
• Very poor breathing. Loss of speech ability.
• More progress in the last year. Speeding up
• Passed away in 2003.
• Using a walker now Speech slow and. slurred Want to fall asleep at any time 
• It has sped up over the last year
• Within a year he went from having poor balance to needing a motorized chair to get around. He had to start using diapers because he could not tell most of the time when he had the need to use the bathroom. His voice level became very low and had to start using thickeners to prevent aspiration pneumonia from recurring.
• Died 9 months after diagnosis
• Balance is worse. More falls. Drooling from excess saliva. Some difficulty eating. Coughs a lot. Needs a lot of prompts when walking.
• Went from using rollator to wheelchair basically overnight. Legs extremely weak.
• Walk, speech, handwriting, urinary frequency
• Last year I participated in Irish Dancing competition, now I rarely walk unaided by either a cane or my husband's arm.
• He has become bedridden. Cannot tolerate transfers even to recliner or w/c. No muscle control. Cannot speak at all. Contracted hands. Can eat and swallow finely chopped /puréed food, but must be fed. Good cognition still.
• had a supra-pubic catheter fitted. Had light anesthetic (general)
• was plateau level for about a year- was doing PT/OT/Speech therapy 3x/week- then started with swallowing/speech difficulties/excessive secretions/coughing
• He went from using walker, to unable to stand, to using Hoyer lift. Regular diet to soft foods. Decline in speech. Unable to feed himself. Last 5 week's of life, did not try to get out of bed due excessive sleepiness
• Speed of deterioration lead to the changed diagnosis from PD to MSAp
• Major decline in the last year
• Balance has deteriorated
• only diagnosed by neurologist a month ago. Significant regression in last year.
• Very rapid progression of symptoms. Died 6 weeks after diagnosis as gave up and stopped eating.
• she fell 6 months ago and her condition has been getting worse
• Walking deteriorating, balance and falling issues, choking issues, deteriorating vision, extreme fatigue, cognition problems, pneumonia 4 times this year, worsening blood pressure issues
• Diagnosis in April, 2020, now walks with assist of one with walker . Wheelchair for outings. Trached, on vent at night, urinary catheter in place, assist with bath and shower. Swollen feet and legs plus 3 pitting edema, cold hands and feet. Does not sweat. Irregular breathing pattern

Living Conditions:

Does/Did the individual receive adequate support to live comfortably?

yes

54

no

14

If the individual does/did not receive adequate support to live comfortably, please indicate what is/was lacking: 

individual has/had no caregiver

5

caregiver is/was unable to meet the individual's needs

8

individual lacks/lacked financial resources needed for adequate care

10

individual lacks/lacked access to knowledgeable medical care providers

6

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

3

individual refuses/refused assistance

2

Transition Issues :

If the individual was lost to MSA, how long after MSA diagnosis did he/she live?

one year

0

two years

2

three years

1

four years

0

five years

0

six years

0

seven years

1

eight years

0

nine years

1

ten years

1

Still alive

1

9 months

1

6 weeks

1

If the individual was lost to MSA, please indicate the cause of death:

Respiratory failure (stopped breathing)

5

Respiratory infection (e.g.: pneumonia)

0

Respiratory blockage (choking, obstruction)

0

Heart attack

0

Stroke

0

Other complications from blood clot(s)

0

Digestive system failure (unable to digest food)

1

Digestive system blockage

2

Head injury due to fall

0

Other injury due to fall

0

If 'other', please state:

• Sepsis possibly from constipation or uti.

If the individual was lost to MSA, what was his/her age at the time of death?

20-25

0

26-30

0

31-35

0

36-40

0

41-45

0

46-50

0

51-55

0

56-60

2

61-65

2

66-70

0

71-75

1

76-80

1

81-85

1

86-90

1

90 or older

0

Has/Had the individual made arrangements to donate his/her brain to an agency for research?

No

48

Yes

13

If the individual has/had made arrangements to donate his/her brain for research, please identify the agency to which the donation was made:

Australia

1

Brain and Mind Centre Camperdown Australia

1

He donated his body to Emory University in Atlanta, Georgia

1

MGH

2

Mayo Clinic

3

Mayo Clinic, Jacksonville, FL

1

Mayo clinic. Florida

1

NIH

1

UH Toronto Western Hospital, Mobility disorders cljicb

1

UWA Australia

1

We are looking into it and actually talked to a social worker today at the Cleveland Clinic re this

1

not yet - just diagnosed - need time.

1

Does/Did the individual with MSA support a "patient's right to die?"

no

7

yes

39

uncertain/undecided

18

Your comments:

Please feel free to add comments, observations and experiences which you feel may be helpful to others who research, educate and raise awareness of MSA:

• The neurologist gave me directions to search MSA-C and I was able to get a lot of information from the coalition. Dad benefited of in home physical, speech and occupational therapist several times a week which encouraged him to work harder on his daily symptoms. He also had a nurse that would communicate with his doctors at any sign of trouble.
• I am on hospice and my 90 year mother who is in good health is my caregiver but she needs help and I feel guilty. After she is gone I still want to stay home what then. Also why should I have to pay for this book from Amazon. I'm already having to educate Drs nurses hospice etc. Why can't this be available to me
• My dad's neurologist he has now doesn't make any suggestions on things to try and help with the symptoms. We will be looking at changing to one who specializes in MSA. He is slowly progressing and if he hasn't walked or talked for a while he tends to struggle.
• I don’t wish this to anyone. 🙏
• REM sleep disorder is very poorly understood by medical people. It should ring alarm bells that something is wrong neurologically, but it doesn't. It is important that this seemingly benign symptom gets more attention in medical education.
• I would encourage patients, caregivers and families to take a deep breath and live one step/day/phase at a time. My husband wanted so badly to participate in a clinical trial. He was seen several times at Mayo, Rochester, MN, but he was not selected for a trial and now disease progression is too great. I would enjoy others to look into trials early on. Thank you for collecting this information.
• 7 months prior to death, neurologist/movement specialist suggested hospice care. Fortunately, my husband was capable of making that decision, and others, till day of death. He chose hospice.
• We need more support for people and caregivers. This is a horrible disease.
• husband and I are both from Europe where right to die is much more advanced than in north America. For us it is part of living. It appears a very hot political issue in N.A.
• Had a musky odor. Woeful lack of support from his medical team. Medical team lacked awareness of MSA hence being diagnosed so late into the disease process. Lack of information, support and care for the family. Lack of equipment to make life easier i.e. no hospital bed downstairs so spent last year+ sleeping on a sofa as couldn't get upstairs. Had to buy his own wheelchair. Post death, the family held a meeting with the medical team (at the family's insistence ) regarding the poor level of care provided. Following the meeting the family instigated education and individual support workers, for MSA and neurological patients/family, post diagnosis.
• I believe it’s important to know some symptoms start way earlier and most doctors are unable to connect the dots until years later resulting in frustration for patients and caregivers to the point where seeing yet another doctor is just too much to handle

Thank you for taking the time to complete this survey - your input is invaluable for those involved in MSA research, education and awareness. We welcome your comments about this survey  -  please enter them here­

• Any thing that will help people with MSA will be good
• I hope to know why its happened
• I am to be contacted by anyone for more information
• Thanks!
• I am having trouble getting the med Northera and my NOH is getting really bad it swings between220/110 when trying to sleep and 58/38 when I stand up to walk it is obviously when I fall the most so in the recent weeks I have had to use my motorized wheelchair. I have had the chair for a long time but could make it with a Walker if necessary. Thank you