The purpose of this survey was to collect data and information from individuals who are currently living with Multiple System Atrophy (MSA), and from caregivers and loved ones of those lost to MSA.
The data collected through this survey was made available, at no cost, to groups, agencies and medical personnel providing treatment, education and research for MSA.
Start of Survey Responses, Survey #1
Who is completing this survey? 829 responses
| Person living with MSA | 318 |
| Caregiver/loved one of an individual currently living with MSA | 388 |
| Caregiver/loved one of an individual lost to MSA | 123 |
Background Information:
In which country/region does/did the individual reside? 829
| Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermont | 39 |
| Region II: New Jersey, New York, Puerto Rico, Virgin Islands | 40 |
| Region III: Delaware, District of Columbia, Maryland, Pennsylvania, Virginia, West Virginia | 50 |
| Region IV: Alabama, Florida, Georgia, Kentucky, Mississippi, North Carolina, South Carolina, Tennessee | 106 |
| Region V: Illinois, Indiana, Michigan, Minnesota, Ohio, Wisconsin | 98 |
| Region VI: Arkansas, Louisiana, New Mexico, Oklahoma, Texas | 76 |
| Region VII: Iowa, Kansas, Missouri, Nebraska | 31 |
| Region VIII: Colorado, Montana, North Dakota, South Dakota, Utah, Wyoming | 14 |
| Region IX: Arizona, California, Hawaii, Nevada (American Samoa, Guam, Northern Mariana Islands, Trust Territory of the Pacific Islands) | 53 |
| Region X: Alaska, Idaho, Oregon, Washington | 48 |
| Region XI: Canada | 38 |
| Region XII: Central America | 2 |
| Region XIII: Asia | 15 |
| Region XIV: Africa | 13 |
| Region XV: South America | 1 |
| Region XVI: Antarctica | 1 |
| Region XVII: Europe | 86 |
| Region XVIII: Australia (continent), New Zealand | 72 |
| Region XVIII: Australia (continent) | 30 |
| Region I: Connecticut, Maine, Massachusetts, New Hampshire, Rhode Island, Vermon | 16 |
What is/was the individual’s gender? 829
| male | 486 |
| female | 343 |
Diagnosis Data:
At what age was the individual diagnosed with MSA? 829
| 20-25 | 0 |
| 26-30 | 1 |
| 31-35 | 3 |
| 36-40 | 11 |
| 41-45 | 28 |
| 46-50 | 75 |
| 51-55 | 158 |
| 56-60 | 179 |
| 61-65 | 180 |
| 66-70 | 106 |
| 71-75 | 63 |
| 76-80 | 16 |
| 80 or older | 9 |
With which type of MSA was the individual diagnosed? 829
| MSAc | 364 |
| MSAp | 237 |
| uncertain | 228 |
Please indicate the first/earliest symptom(s), which caused the individual to seek diagnosis: 827 responses
| Value | Count |
|---|---|
| Impaired Balance | 451 |
| Difficulty Walking | 330 |
| Falling | 270 |
| Impaired Bladder Control | 246 |
| Unstable Blood Pressure | 222 |
| Impaired Fine Motor Skills | 214 |
| Impotence | 203 |
| Impaired Speech | 169 |
| Impaired REM Sleep Cycle | 165 |
| Tremors in Extremities | 149 |
| Neuropathy (numbness, tingling in extremities) | 134 |
| Digestive Disorder (diarrhea, constipation) | 131 |
| Chronic Fatigue | 129 |
| Fainting | 125 |
| Dystonia (muscle spasms/ rigidity) | 118 |
| Depression | 110 |
| Anxiety | 96 |
| Chills/Sweating/Overheating | 94 |
| Myalgia (muscle pain) | 92 |
| Impaired Memory – Short, Intermediate, Long Term | 77 |
| Confused Thought/Cognition | 77 |
| Inappropriate Emotions (crying, anger, etc) | 75 |
| Impaired Vision | 74 |
| Insomnia | 66 |
| Chronic Headaches | 63 |
| Impaired Bowel Contol | 61 |
| Dry Eyes | 58 |
| Excessive Reaction to Minor Stressors | 57 |
| Dry Mouth | 54 |
| Irregularity | 53 |
| Excessive Neuro-Response (jumpy reflexes) | 53 |
| Neuro-Motor Freeze (temporarily unable to move at all) | 51 |
| Difficulty Breathing | 43 |
| Rashes, Dry Skin, Itchiness | 42 |
| Excessive Gas/Bloating | 39 |
| Head Droops Down or To One Side | 38 |
| Eye Fatigue | 35 |
| Difficulty Swallowing/Choking | 65 |
| Excessive Coughing | 34 |
| Teary Eyes | 26 |
| Suicidal Ideation/Thoughts | 24 |
| Overly Moist Mouth | 17 |
| Puffiness Under the Skin | 13 |
| Attempt(s) at Suicide | 6 |
| dizziness | 4 |
| Optic Nerve Damage | 3 |
| Couldn’t do anything without getting fatigued and having hard time breathing | 3 |
| Sleep apnoea, | 2 |
| not picking up feet, blank face, could no longer understand speech, | 2 |
| Dizziness upon standing | 2 |
| Extra Saliva Small Handwriting | 2 |
| sleep apnea | 2 |
| Intense pain | 2 |
| Gastroparesis | 2 |
| Limited movement of left hand | 1 |
| Skakinh les when exercice | 1 |
| Sleep disorder, severe PLMD | 1 |
| severe apnea | 1 |
| Apathy, no sense of pain or pleasure | 1 |
| restless legs | 1 |
| Microphagia | 1 |
| Chest pain frequent | 1 |
| continual PneumoniaPhenamonia | 1 |
| Parkinson’s medication not working…halucinations from medication | 1 |
| Weakness, especially on one side of body | 1 |
| Night terrors | 1 |
| Frozen shoulder | 1 |
| stridor | 1 |
| Almost passed out in store | 1 |
| sudden loss of muscle mass | 1 |
| B12 difficiency | 1 |
| inability to hand write and severe intolerance to alcohol | 1 |
| loss of smell since about 20 yrs old | 1 |
| swollen cold feet and ankles. | 1 |
| Poor taste, Constipation | 1 |
| swollen lowewr legs and feet extremely cold. | 1 |
| very tirered | 1 |
| Facial ticks | 1 |
| Leaning forward and to one side when standing or walking | 1 |
| Weakness on left side | 1 |
| Heart rate high low variance | 1 |
| hallucinations | 1 |
| Heart tremours | 1 |
| Did things very slowly, couldn’t remember where places were, night terrors & snoring, paralyzed vocal chord | 1 |
| Stiffness in shoulders | 1 |
| Hearing loss | 1 |
| Water infections | 1 |
| My handwriting was off, not as neat. | 1 |
| Difficulty drivig-car would drift to the shoulder frequently when he was driving | 1 |
| vertigo | 1 |
| Frequent urination. No libido. | 1 |
| hand writing changed, acting out dreams | 1 |
| micro fagia (tiny handwriting) | 1 |
| Light headed | 1 |
| Feeling of pressure inside the head likened to holding nose and keeping mouth closed while blowing hard | 1 |
| Lapses of time which could not be accounted for | 1 |
| Weight loss | 1 |
| couldn’t keep time to music, difficulty writing | 1 |
| range of motion in legs i.e. difficulty crossing legs while putting on socks.shoes | 1 |
| Other | 45 |
How long did it take for the individual to secure a formal diagnosis of MSA? 823
| 0-6 months | 98 |
| 6-12 months | 129 |
| 12-18 months | 137 |
| 18-24 months | 110 |
| 24 or more months | 349 |
How many neurologists did the individual consult during the diagnosis process?826
| 1 | 116 |
| 2 | 264 |
| 3 | 244 |
| 4 | 122 |
| 5 or more | 77 |
| I have not been seen by a neurologist | 3 |
Was the individual diagnosed with any condition(s)/illness(es) prior to receiving a diagnosis of MSA? 820 responses
| no | 231 |
| yes | 589 |
At what age did the individual first notice symptoms, later attributed to MSA?824
| 20-25 | 3 |
| 26-30 | 4 |
| 31-35 | 9 |
| 36-40 | 25 |
| 41-45 | 62 |
| 46-50 | 135 |
| 51-55 | 174 |
| 56-60 | 187 |
| 61-65 | 130 |
| 66-70 | 65 |
| 71-75 | 23 |
| 76-80 | 5 |
| 80 or older | 2 |
Are/Were any cycles observed with regard to periods of worsening of the individual’s symptoms? 774
| no | 500 |
| yes | 274 |
f cycles are/were observed with regard to worsening of the individual’s symptoms, what was the duration on the cycle? 307
| less than 6 hours | 44 |
| 6-12 hours | 38 |
| 13-18 hours | 8 |
| 19-24 hours | 15 |
| one to two days | 81 |
| more than two full days | 121 |
Are/Were there any strategies/interventions that help(ed) reduce the individual’s symptoms? 710
| no | 313 |
| yes | 397 |
If yes, what are/were the strategies/interventions that help(ed) reduce the individual’s symptoms? 420 responses
| Value | Count |
|---|---|
| Diet | 144 |
| Exercise/Physical Activity | 246 |
| Physical Therapy/ Movement Therapy | 260 |
| Accupuncture | 27 |
| Light Therapy | 14 |
| Speech Therapy | 172 |
| Supplements (please describe below) | 71 |
| Socialization | 129 |
| Games, Puzzles, etc. | 75 |
Has/Had the individual regularly taken any prescription medication prior to or after diagnosis of MSA? 811 responses
| no | 129 |
| yes | 682 |
Has/Had the individual regularly taken any over-the-counter medication(s) prior to or after diagnosis of MSA? 789 responses
| No | 405 |
| Yes | 384 |
Neurological Care:
On average, what is/was the frequency of the individual’s neurological care? 814
| less than once a year | 61 |
| once a year | 69 |
| twice a year | 236 |
| three or more times a year | 391 |
| no neurological care since diagnosis | 57 |
Has/Had the individual participated in clinical research regarding MSA? 810 responses
| no | 717 |
| yes | 93 |
In the past/last year, how would you describe the rate of progression of the individual’s MSA illness? 793
| (1) very few signs of any progression in the past/last year | 21 |
| (2) some subtle signs of progression in the past/last year | 77 |
| (3) definite signs of progression in the past/last year | 389 |
| (4) rapid progression in the past/last year | 306 |
Does/Did the individual receive adequate support to live comfortably? 775 responses
| yes | 695 |
| no | 80 |
If the individual was lost to MSA, how long after MSA diagnosis did he/she live? 133 responses
| one year | 5 |
| two years | 13 |
| three years | 33 |
| four years | 17 |
| five years | 14 |
| six years | 6 |
| seven years | 5 |
| eight years | 5 |
| nine years | 7 |
| ten years | 7 |
| Still living | 2 |
| 9 months | 2 |
| Less than one year after Certain dx | 1 |
| Still here! | 1 |
| pls ignore as button was accidently hit! | 1 |
| Not yet | 1 |
| about 5 or 6 weeks | 1 |
| living | 1 |
| yet to be confirmed | 1 |
| 6 months | 1 |
| 18 months | 1 |
| 1.5 years | 1 |
| 13 | 1 |
| Has’t died yet, | 1 |
| 8 1/2 years | 1 |
| still alive | 1 |
| Still going | 1 |
| 4 months | 1 |
| Not lost | 1 |
If the individual was lost to MSA, please indicate the cause of death: 123 responses
| Respiratory failure (stopped breathing) | 38 |
| Respiratory infection (e.g.: pneumonia) | 33 |
| Respiratory blockage (choking, obstruction) | 7 |
| Heart attack | 1 |
| Stroke | 2 |
| Other complications from blood clot(s) | 2 |
| Digestive system failure (unable to digest food) | 2 |
| Digestive system blockage | 14 |
| Head injury due to fall | 0 |
| Other injury due to fall | 0 |
| Accidentally tapped response and I don’t seem to be able to “unselect” | 1 |
| still alive | 1 |
| n/a | 1 |
| Respiratory/Pulmonary | 1 |
| Unfortunately, my mom had a feeding tube ,while living in a nursing home ,the nurse turn up the setting on the machine and forced the feedings very fast ,my mom aspiratied on her feeding and chocked . She became brain dead and died 8 weeks later . It was a hellish situation. She was mentally aware untill this happened . She finally died 8 weeks later from aspiration . | 1 |
heart gave out. not heart attack  | 1 |
| septic shock, unexplained source. This was during the H1N1 epidemic of 2009. I had a very slight cold and have wondered if I didn’t give him the final infection. The alternative theory I have is worse, that he developed mesenteric ischemia. | 1 |
| NA | 1 |
| passed peacefully in sleep. | 1 |
| unknown but found blood in the ear | 1 |
| paralysis agitans | 1 |
| respiratory failure and pneumonia | 1 |
| msa | 1 |
| Fainted upon standing up, never regained consciousness. | 1 |
| paralysis of vocal chords | 1 |
| Fluid on lungs duue to asperation | 1 |
| aspiration | 1 |
| MRSA | 1 |
| Pneumonia/ respiratory failure | 1 |
| Suicide | 1 |
| Cause of death on death certificate was Heart Disease with Autonomic Failure as a secondary, contributing, cause. | 1 |
| Heart stopped | 1 |
| Aspiration pneumonia | 1 |
| Sepsis secondary to aspiration pneumonia after chocking on food. | 1 |
If the individual was lost to MSA, what was his/her age at the time of death?131 responses
| 20-25 | 0 |
| 26-30 | 0 |
| 31-35 | 3 |
| 36-40 | 1 |
| 41-45 | 0 |
| 46-50 | 4 |
| 51-55 | 7 |
| 56-60 | 19 |
| 61-65 | 36 |
| 66-70 | 30 |
| 71-75 | 22 |
| 76-80 | 6 |
| 81-85 | 1 |
| 86-90 | 1 |
| 90 or older | 1 |
Has/Had the individual made arrangements to donate his/her brain to an agency for research? 654 responses
| No | 525 |
| Yes | 129 |
Does/Did the individual with MSA support a “patient’s right to die?” 719 responses
| no | 72 |
| yes | 420 |
| uncertain/undecided | 227 |
End of Survey Responses
dataMSA 