Daily Activities – what dystonia does to change the day
A. Context
Dystonia, even if it affects only one body part, has a profound effect on an activity requiring its use. Clinical studies seem to address pain, genetic links, and effects of some treatments. Patients however report not just concerns with what their body is doiug but with what it no longer is able to do. There is an opportunity with the surveys to give researchers information about the practical at home effect of the condition.
Vocal cord dystonia brings to the patient’s attention vividly the many times a person is called on in society to speak – telephone, office meeting, job interview, drive through window, shopping, talking with family and friends. Something as simple as telling your name when asked can be a challenge, Being unable to say your own name can be embarrassing and being misheard can be frustrating.Any job that requires speaking including call centre, tour guide, courtroom lawyer, teacher, TV host, radio announcer is profoundly affected and the simple fact of a vocal cord condition can cause significant changes to career comfort, social function, self-esteem, as well as finances.
Dystonia of the fingers or hand can similarly affect not just use of a fork for eating, scissors for cutting, pen for writing, computer keys, telephone controls, but also ability to use bank machines, count coins, shake hands, wave. It affects ability to wash the face, do the hair, brush the teeth. Any profession that requires precise use of the hand or arm can be profoundly impacted, from painter, jeweller, seamstress, bricklayer, typesetter, artist to pianist, bagpipes player, violinist, guitarist. It can end careers for golfers, tennis players and can profoundly change ability to enjoy any such activities as leisure pursuits. Its effect on grip, ability to hang onto or let go of objects can change ability to hold a cup, , set a table.
Dystonia of the eyelids has a debilitating effect on any function that requires vision, and most activities do. Dystonia of the neck, a common form of dystonia, in theory would have minimal effect because the patient can still see, hear and use their hands normally. However patients report that it affects ability to look straight at objects and therefore ability to go up or down hills or stairs, to look at a computer screen, read a book, visit with friends, have a business meeting, be on camera, or move around the home without bumping into objects. The pain of cervical dystonia can be so intense that it affects ability to stand without support, to sit without leaning on something and can disrupt sleep.
Dystonia of the legs or feet affects not only gait but any activity that requires their use. Patients report not just problems walking down a street but problems walking around their home. Dystonia that affects the trunk can upset balance and affect ability to dress, get into and out of a shower. It can change ability to pursue any career that requires agility and leisure activity like going for a walk along a beach or in another city. It affects and can end careers for runners, cyclists, baseball or hockey players and the joy people had doing such sports for leisure.
Tremors and discomfort maintaining any still body position profoundly affect ability to get a haircut, see a dentist, even to have a medical test like an MRI. The appearance of the person with dystonia affects comfort being seen in a webinar, photographed, interviewed on television, called up to appear on stage.
Researchers have commented that dystonia may be considered officially a minor medical challenge but its effect on daily life may be greater than that of some more serious medical conditions Patients also note the irony of the condition that some forms of dystonia seem to affect most those who love an activity most and now cannot do it – musicians, athletes often at the height of their careers.
The sadness of the effect on daily life is its own chapter, but the surveys have a practical goal. It is hoped that as researchers study what activities are affected, patterns may emerge about how the brain and muscles struggle and try to compensate for this condition. In the study of hand dystonia, many musicians have looked intricately at motion they used to take for granted, have studied precisely what they can no longer do and how to try to work around it. Golfers have noticed patterns in what type of swings are now most challenging. Writers have examined whether chalk is easier to hold than a pen, and such practical experiments may be of use to researchers about the technical aspects of motion that are impaired.
Some patients with dystonia are obliged to change or quit their job and suffer financial setbacks. Some have to apply for disability insurance coverage and they report difficulty with such applications. They report problems technically with filling out the forms if they have hand dystonia, or doing an oral interview if they have vocal cord dystonia. They report problems of insurers not being familiar with the condition and difficulty being believed or having to document the effects on their lives. The surveys may advance public understanding of the condition and enable reasonable consideration of such insurance claims.
B. What seems useful to study further, areas of mystery
The common saying that ‘you had to be there’ seems applicable in trying to fill the gap between what researchers know and what patients experience in daily life with dystonia. Some of the effects may not seem medical, but may have a medical base. When holding a fork is difficult, and chewing is hard to align, patients may simply eat less and are less likely to have a healthy diet. When a person has to reduce job hours, there is often income loss and when dystonia requires medical consultation, there are often new costs of travel, doctor fees, and costs of medication. The financial costs can be so high that they may also affect even the ability to seek treatment or the choice of treatment.
The surveys attempt to save time of the researchers and be respectful of the time of the patients, to assemble answers to hundreds of questions and subquestions about the effect on daily life, so researchers can see patterns.
Many areas of medicine already survey daily life of the patient. There is a rich field of questions to tap, including from surveys for Parkinson’s disease or surveys of categories of concern such as fatigue.
To design the survey several scales are examined and some items were adapted for dystonia study. Fatigue Impact Scale- FIS and a modified fatigue impact scale MFIS. These scales look at trouble paying attention, alertness, difficulty thinking clearly, clumsiness, forgetfulness, difficulty making decisions, muscle weakness, difficulty organizing thoughts, lack of interest dong things, trouble completing physical tasks
Poor quality sleep can lead to fatigue in the day or to sadness. A clinical study may not have time to ask a patient about their sleep patterns or types of pillows or heating pads they use. These may actually be relevant questions to the patient’s ability to function during the day. The surveys try to collect patterns of such data.
In addition, anecdotally, some patients have suffered injury from dystonia during sleep. Some report that they have involuntarily jerked an arm or leg so badly that a bone broke,and some have reported that in the night they woke to excruciating pain because they had involuntarily bitten down hard on their own tongue. Such situations may provide useful insights about the nature of dystonia.
C. Comments
from clinical studies and researchers
-The consulting room may not always be the best setting for evaluation of patients with movement disorders as many dyskinesias are strikingly situation specific and variable in severity
– To examine someone with dystonia they should be observed during performance of the tasks that elicit it, such as typist at a keyboard, musicians while playing their instruments
even within medical circles
– Dystonia affecting athletes has not been researched to the same extent as other dystonias
– Many cases of secondary dystonia have no diagnostic, radiologic or serologic marker so doctors have to rely on information from the patient’s history or subtle clinical findings
– Any long term assessment of patients with dystonia must take into account the natural history of the disease
– Studies require accurate and detailed evaluations of the past histories of large number of patients
-To objectively assess the response to various therapeutic interventions, it is critical not only to use appropriate rating scales, but also to take into account the intervention’s effects on activities of daily living and quality of life.
-Dystonia does not persist in sleep.
-Dystonia resolves during sleep
from patient experience
eating, drinking
When I eat, food falls off my shelf
I’ve nearly choked a few times. It was very scary
I no longer boil water in a kettle because the spasms are unpredictable
I was not able to make myself a sandwich
It’s so hard to chew I was wondering if they make baby food in quart size
At the table I was eating with my head nearly lying on the table
Because of the shaking, I had trouble finding my mouth with my fork
I can no longer chop up my food because of my hand position
I find it hard to drink. Putting a glass to my mouth makes my head turn to one side
I cannot peel vegetables because a spasm when holding a knife is dangerous
Eating has become a new problem
personal care
A few times I got stuck in the bathtub, unable to get out
It was hard to put on make-up with shaky hands
I need help getting in and out of the bath because of my legs spasms
Showering was nearly impossible since my neck and head were stuck on my shoulder
sleeping
At night the leg tremors sometimes caused my bed to shake
Cramps were waking me up every night
Dystonia has meant many sleepless nights
I go to bed early to help me cope
I could no longer sleep on my stomach
I have to be careful what pillow to use but a side pillow works for me
I have trouble sleeping when my teeth are chattering
Even as I slept my neck would shake any time I turned over
Since I don’t sleep well, I’m still tired in the morning
I wake up with aching legs so my spasms must still be happening as I sleep
The tremors keep up even when I lie down to try to sleep
I wake up several times a night due to spasms
telephone, talking
I ordered ice cream by sign language and the clerk responded by sign language
Voice activated devices do not always understand me.
I told the X ray tech I have a vocal disorder. She said it was OK because she can do
sign language. I said “That’s not the point”
It is hard to discipline my teenagers when I can’t yell at them
writing, computer
I can barely read my own handwriting
I had a problem hanging onto the pen when I was writing
reading
I had trouble holding a book steady enough to read
carrying objects, household chores
A backpack triggers my neck dystonia
I could no longer carry a backpack
I am unable to scoop snow because repetitive action leads to a flare of symptoms
I can no longer lift anything heavy
If I try hard to do the things I used to, the next day the spasms are worse
moving around
My eyes were scrunching tight so I could not see enough to drive
When crossing a busy street or walking in a crowd blepharospasm is a serious problem
education, career
I had to drop out of school
The principal had given my limitations some thought and decided against letting me attend
I had to quit my job after being there 20 years.
I had to quit the job because I was not able to function there safely
I had to take most of my courses online
It’s hard to look for paid employment because I can’t see well
I had to take so much sick time that I lost my job
I lost my job because of dystonia
sports, leisure
I can’t do advanced yoga any more
I can no longer dance
I used to hike and now I can barely walk to the bus stop
It was harder to do what I loved, golfing, bowling, dancing
financial
The disability assessment people have no idea of the pain we suffer
After 3 years of seeing doctors and paying $100,000 for medical care I got a diagnosis
We now had to find a way to pay our huge medical bill
It is a long drawn-out process to apply for disability
I went bankrupt
I’ve had to spend much of my salary on devices for dystonia
The injections cost me 3000 dollars
D How to ask
Source of question ideas
-patient reports, biographies, clinical studies
E. Question Categories
(this is what dystonia hands you -how it makes things hard)
general
bathing, dental, groom, self care
computer, typing
concentration, pain
dressing
drinking- cup, straw, ice, tin, glass mug
eating, chew, swallow
embouchure, music, straw, drink bottle, whistle
gaze, vision , see where going,
grasp objects, hold on
hand writing, drawing, pen, chalk, scissors
hobbies – music, crafts
hobbies – sports
housework – chores
job, education
read, watch TV
sing
sit, move around house, steps, shelves – see also mobility
sleep, nap, wake at night
social – look at , wave, raise hand, shake hands
speak
stairs, uphill, downhill, ladder
swim
F. – Questions asked
surveys 3A and 25
G. Results
daily activities
3A 99 daily act 17 33 81 5
3B 66 daily act 9 12 83 2
25 8 daily activ 14 22 78 3
max no. respondents 99
total questions 67
likely type of dystonia all
percent of all respondents doing survey 99 or 508 or 19.4%
H. Results
(The bracketed item at the end of each question set indicates the survey number and then the question number. eg. 1-3 is survey one, question 3)
1. general effect on daily life
-Has dystonia affected your daily life?
27.52% dressing, bathing
36.34% eating
51.54% walking, mobility
45.17% use of hands, dexterity, grip, handwriting
42.51% speaking
57.70% career options
66.53% energy, sleep
78.85% mood. optimism, sadness (1-12)
2. sleeping, napping, waking at night
-Has dystonia changed your ability to sleep through the night?
17.20% My sleep is the same as before dystonia
10.75% I have more trouble getting to sleep due to pain
19.35% I have more trouble getting to sleep due to spasms and other movements
25.81% I wake more often in the night due to pain or spasms
9.68% My sleep has changed but I am not sure if it is due to dystonia
or medication I am taking
5.38% unsure
11.83% not applicable (3A-25)
-What is your experience with dystonia as you try to sleep? Please select the ffeature that is of most concern to you.
10.50% I keep having involuntary movements
4.97% I experience pressure and pain to go to one body position
3.87% I have spasms within minutes every time I try to change position
17.68% I have only found one or two positions where I can finally sleep
6.63% I put myself into odd body position in order to sleep
13.26% My dystonia is less at night
20.99% I am able to have a pretty good sleep most nights
12.15% I feel sorry for anyone who has to sleep near me because I
am so restless
1.66% unsure
8.29% not applicable (2A-38)
(this question only permitted one answer per respondent. It might have been more
sensitive if it had permitted a checklist to allow several options)
-sleep positions
37.50% I can sleep in many positions comfortably
12.50% Dystonia has not affected the positions I can sleep in
37.50% Some sleeping positions are painful
50.00% Some sleeping positions lead to spasms
50.00% A new position often causes no pain for a few minutes and
then pain builds up so I have to shift position
50.00% Lying on my back is comfortable
12.50% Lying on my stomach is comfortable
37.50% Lying on my dystonic side is comfortable
12.50% Lying on my nondystonic side is comfortable (25-18)
(low number of respondents for this question)
-Does deep sleep reduce your dystonia?
40.00% Yes, my pain is less in deep sleep
40.00% Yes, my muscle tightness seems less in deep sleep
40.00% Yes, my spasms or tremors seem less in deep sleep
26.00% Yes, my jerky involuntary movements seem less in deep sleep
2.00% Yes, I apparently can speak more clearly when walking in my sleep
14.00% No, my dystonia is always intense, even from what I can tell,
during sleep
12.00% unsure (4-23)
-sleep patterns
0% My sleep is turbulent because of involuntary jerking
50.00% My sleep is turbulent because of pain and trying to get comfortable
0% My jerking motions at night are so strong I have broken objects near me
37.50% When I first wake up my dystonia seems gone
25.00% When I first wake up I am a bit dizzy
50.00% I am often awake in the night, member of the no-sleep club
37.50% A daytime nap helps me
12.50% A daytime nap makes me stiffen up
25.00% Dystonia has not affected my sleep (25-17)
3. eating, chewing, swallowing
-eating
37.50% I eat more slowly because of dystonia
0% I eat less quantity because it is so hard to get food to my mouth
12.50% I eat less quantity because it is so hard to chew and swallow
12.50% It is so hard to eat that I sometimes skip meals
25.00% It is hard to prepare some foods due to dystonia – eg. cutting, mashing
50.00% My eating habits have not changed due to dystonia (25-10)
-Do you have challenges using a knife and fork?
10.64% I have trouble using both hands at once to keep food steady
with the fork and cut with the knife
10.64% I have trouble cutting with the knife
18.09% I have trouble moving the fork to my mouth reliably
4.26% I have trouble opening my mouth appropriately for the food to enter
17.02% I have trouble chewing some food
24.47% I have trouble reliably swallowing some food
44.68% I have no trouble using a knife and fork to eat (3A- 8)
-Do you have any challenges eating finger food like an apple or potato chips
or a cookie?
10.75% I have trouble grasping or holding them
4.30% I have trouble opening my mouth for them
15.05% I have trouble chewing them sometimes
27.96% I have trouble swallowing them sometimes
46.24% I have no trouble due to dystonia when eating a finger food (3A – 7)
-After you have swallowed food do you have any challenges new since dystonia?
8.70% More food seems to get stuck in my teeth, possibly because it
is harder to move it around in my mouth
10.87% I burp more often than I used to and it feels like the burp
helps realign the mouth and esophagus somehow
38.04% I have sometimes nearly choked when eating as if there is a problem
timing the swallowing
38.04% I have no new challenges with swallowing or after swallowing (3A-9)
-These questions ask about your diet and your weight linked to dystonia.
7.89% It is so much work to eat that I sometimes skip a meal
13.16% I have lost weight since I got dystonia
15.79% My weight is unchanged
36.84% I have gained weight
23.68% I am on medication that can cause weight gain
13.16% I still try to have a full diet and use fruit smoothies and chop
up foods to make sure I get adequate nutrition
15.79% I am concerned that my diet may lack some nutrients because
of the problems eating
10.53% I use diet enhancers like protein powder or protein drinks (7-13)
4. drinking, use of cup, straw, bottle, pop tin
-Do you have any challenges when drinking a beverage?
11.46% It is hard for me to grasp a glass or tin
14.58% It is hard for me to hold a glass steady
7.29% It is hard for me to raise the glass to my lips
13.54% It is hard for me to arrange my mouth appropriately
to drink from the edge of a glass
4.17% It is hard for me to close my mouth appropriately
to drink out of a pop tin or cup with a hole and lid
2.08% It is hard for me to drink out of a straw
17.71% It is hard for me to swallow some liquids
43.75% I have no difficulty from dystonia when I drink beverages (3A -6)
5. dressing
-Has dressing presented you with special challenges?
51.06% I still can do up or undo buttons
53.19% I still can do up or undo zippers
52.13% I can put a T shirt over my head unassisted
41.49% I have trouble balancing as I get dressed
25.53% Since dystonia I have more trouble dressing or undressing (3A- 14)
-clothing
0% Seams on a garment cause me pain in the dystonic area
42.86% The pressure of a strap on my shoulder triggers the dystonia
57.14% I use a cross-body strap for purse or backpack so it won’t slip off
my shoulder
42.86% I use a cross-body strap for purse or backpack to distribute
the weight more comfortably
14.29% I put a purse or wallet on my belt strap
0% Spandex leggings make my body jerk less
14.29% Form fitting leggings are uncomfortable for me
28.57% I have not had to adapt my clothing choice for dystonia ( 25-8)
-Wearing tops with straps or bras, has dystonia affected your comfort?
27.47% The straps are sometimes painful
29.67% One of the straps often slips off
28.57% There is no change to my comfort with tops with straps
1.10% unsure
28.57% not applicable (3A – 16)
-shoes
15.05% It is hard for me to put the foot into the shoe
10.75% It is hard for me to do up shoelaces
44.09% I wear more practical shoes because of dystonia
30.11% Dystonia has not affected my ability to put on or take off shoes
20.43% Dystonia has not affected my choice of shoes (3A – 15)
-covid masks and dystonia
12.50% A mask reduces pressure on my face and feels good
12.50% A mask hides the odd head position of my dystonia
0% A mask is hard for me to wear due to fabric allergies
12.50% A mask is hard to wear because it slips off when I tilt
37.50% A mask is uncomfortable because of the elastics
37.50% It is hard for me to be understood when I speak through a mask
37.50% Dystonia has presented me with no special challenges using a mask
(25-9)
6..bathing, dental, self-care, grooming
-Has dystonia changed your ability to do your hair?
34.04% I can still comb and brush my hair easily
31.91% I can still shampoo my hair easily
17.02% I can still arrange my hair as I wish with braids, hairbands, pins etc.
40.43% It is harder for me to do my own hair but I do it
9.57% I can no longer do some of my own hair care ( 3A- 11)
-Has your tooth care changed due to dystonia?
42.55% I can still manipulate the toothpaste tube
68.09% I can still brush my teeth
51.06% I can still floss my teeth
3.19% Having a toothpick or toothbrush in my mouth helps
reduce the jaw dystonia
12.77% Dystonia has made it harder for me to take care of my teeth (3A- 13)
-Has dystonia affected your ability to use a razor shaving?
17.20% I have trouble using a razor on my face or legs as desired
44.09% I can still use a razor easily
2.15% unsure
36.56% not applicable (3A -12)
7. reaching for, grasping objects, holding on
-Do you have problems reaching for objects?
32.29% I have trouble looking at or reaching down to pick up an object
12.50% I have trouble looking at or reaching for an object at eye level
10.42% I have trouble looking at or reaching for an object (above) eye level
35.42% I have no trouble looking up and down or reaching for objects
7.29% unclear
18.75% not applicable(3A – 3)
(this question had a typographical error at the fourth item. It is
likely however that respondents still understood the question)
– Do you have trouble lifting or carrying objects?
17.53% It is hard for me to grasp objects
25.77% It is hard for me to lift objects
9.28% It is hard for me to carry even light objects
36.08% I can carry light objects but have trouble with heavy objects
20.62% My ability to grasp and lift and carry has not changed due to dystonia
40.21% After I lift and carry objects, my dystonia is a problem for a while
(3A-4)
-Has dystonia changed your ability to move a table or chair?
45.36% Yes, it is a little more difficult than before the dystonia
41.24% No, it is the same as before the dystonia (3A- 5)
8. sit, move around, stand
-Do you find it difficult to hold still to have a picture taken?
13.98% Yes, it is hard because of the pain
55.91% Yes, it is hard because of my spasms or movements
26.88% No, dystonia has not affected my ability to be still for a picture ( 3A- 24)
-Is it hard to sit still in the chair at the dentist’s, barber’s or hairdresser’s?
27.66% Yes, it is hard to sit still because of the tremors or spasms
17.02% Yes it is hard to sit still because of the pain
9.57% Yes it is hard to s\it still because of involuntary jerking movements
17.02% It is hard to sit still but with effort I can do it briefly
17.02% It is not hard to sit still as required (3A – 21)
-Can you sit comfortably in a theatre to watch a two hour movie?
23.91% Yes it is easy for me
31.52% Yes, it is difficult but I can do it
27.17% No, it is nearly impossible for me ( 3A- 22)
9. walking, stairs, hills, ladders
-Are there rooms in your house that you can’t go to because of mobility problems?
6.25% Yes
82.81% No
1.56% unsure
9.38% not applicable (3B-12)
-Do you consider a walking route differently because of dystonia?
23.08% I am grateful if there are walls, fences or posts I can touch as
I walk by, for balance
13.85% I look at the route ahead of me in terms of short bursts of goals to reach
40.00% I prefer not to have to use stairs
18.46% I still can go up and down stairs easily
26.15% I have not thought of my walking route differently due to dystonia (3B-3)
-mobility
75.00% A daily walk helps cheer me up
12.50% As I walk it is easier if I bounce or dance a bit
25.00% It is hard for me to go uphill or upstairs because it is hard for me
to look up
25.00% It is hard for me to go downhill or downstairs because it is hard for me
to look down
50.00% With dystonia I am more fearful of falling
62.50% I trip more often with dystonia
25.00% I fall more often with dystonia
37.50% My dystonia is worse if I go on a roller coaster or other jerky ride
25.00% Dystonia has not affected my mobility (25-15)
10. speaking
-Has dystonia affected your ability to speak?
25.53% I often have trouble speaking
12.77% I sometimes have trouble speaking
12.77% I have trouble aligning my mouth and jaw to form words
21.28% I have trouble producing words that are loud enough to hear
23.40% I have trouble pronouncing some words
24.47% People on the phone more often do not understand me since dystonia
37.23% Dystonia has not affected my ability to speak (3A- 27)
-Have you adjusted your speaking activities due to dystonia?
20.88% I sing less
14.29% I take part less in group singing
23.08% I get others to speak for me sometimes because it is hard to talk
36.26% I sometimes don’t say what I was going to say because it is hard to speak
15.38% I sometimes write down messages when it is hard to say them aloud
39.56% I have not had to change my speaking activities due to dystonia (3A- 28)
-Have you become socially frustrated when you had ideas to contribute but
it was hard to form words and speak?
61.11% Yes
38.89% No (20B- 4)
11. reading, watching TV
-Has dystonia affected your comfort when reading a book of magazine?
42.70% I had have to adjust how I hold a book
24.72% When I hold a book my body tenses up
42.70% I prefer to sit with my head leaning against something when I read
24.72% I prefer to be seated not standing now when I read
33.71% I can’t read comfortably for as long a stretch of time but I can still do it
(3A-32)
-Is your dystonia worse when you got ouside in very cold weather or watch an exciting movie?
29.41% yes but it’s worth it to have a full life
52.94% Yes and I am now more selective in what I do
23.53% No, there is no change ( 20A- 40)
12. housework, chores
-Do you mow the lawn or shovel the snow less often or less thorougly than before dystonia?
55.10% Yes
24.49% No
20.41% not applicable ( 3A – 1)
-Are you still able to vacuum?
77.78% Yes
14.14% No
8.08% not applicable ( 3A -2)
13. education, job
-Has dystonia affected your education choices?
2.17% I have been denied entry into some classes because of dystonia
17.39% I have had to avoid some fields of study, due to dystonia
17.39% Shyness or embarrassment have kept me from taking some classes
15.22% I have had to arrange my schedule to allow for the fatigue of dystonia
4.35% Dystonia has limited my education options but I still find an area I can study
25.00% Dystonia has not limited my education options ( 3A- 29)
-Has dystonia affected your career?
8.79% I had to reduce my paid work hours due to dystonia
16.48% I have had to take time away from paid work due to dystonia
9.89% I have had to change my job due to dystonia
32.97% I have had to quit my job due to dystonia
2.20% I never was able to have a paid job due to dystonia
4.40% I had retired from my paid job before I got dystonia
5.49% unclear
19.78% not applicable (3A – 30)
-Did you have to reduce your paid work due to dystonia?
7.14% I had to reduce my hours
10.71% I had to change my job role
10.71% I lost income because of dystonia
32.14% I had to give up my job because of dystonia
39.29% not applicable (17A-73)
-These questions ask about your job situation
14.29% I work in the home and have no boss or coworkers
71.43% I have told my boss about my dystonia
57.14% I have told at least one coworker about my dystonia
0% I have not told my boss or coworkers about my dystonia
14.29% I have asked for a special chair, desk or other accommodation
so I can do the job despite dystonia
14.29% I have asked for a schedule or shift change or more breaks
due to dystonia
14.29% I have had to ask for reduced hours due to dystonia
0% I have had to ask for a different job assignment due to dystonia
28.57% I have had to quit my job due to dystonia (25–6)
(low number of respondents for this question)
14. hobbies- music, crafts
-Has dystonia interfered with doing your favorite sport or hobby?
77.33% Yes
22.67% No (1-13)
-Has dystonia interfered with your ability to play a musical instrument
you love or do a hobby you love?
69.23% Yes
30.77% No. (17A – 45)
-If it got harder to play music did you think at first that you had to practise more?
2.63% Yes
13.16% No
84.21% not applicable (19-22)
15. sports
-Has dystonia changed your ability to play some sports?
14.06% It has changed my ability to golf
25.00% It has changed my ability to bowl
25.00% It has changed my ability to catch a ball
28.13% It has changed my ability to throw a ball
6.25% Actually my reaction time bouncing a ball against a wall
is normal and the dystonia seems less when I do it
12.50% unsure
45.31% not applicable (3B-10)
(this question seems to have been poorly framed)
-Has dystonia interfered with your ability to play the sports you love?
52.00% Yes
48.00% No ( 17A- 44)
16. swimming
-Has your enjoyment of swimming changed due to dystonia?
0% Being in a wave pool makes me dizzy now
4.55% The bright lights of a pool or the noise upset me more than they used to
3.03% My buoyancy seems different due to dystonia
9.09% I really enjoy swimming especially since dystonia
40.91% I have never done much swimming
18.18% Dystonia has not changed my enjoyment of swimming (3B- 4)
-swim techniques
80.00% I do not swim
0% The dystonia has not changed the way I swim
0% It is harder to do the crawl since dystonia
0% It is harder to do the sidestroke since dystonia
20.00% It is harder to do the breaststroke since dystonia
0% It is harder to do the butterfly since dystonia
0% I use a snorkel now to do some swim strokes (34-14)
(low number of respondents for this question)
17. social effects, waving, shaking hands, raising hand
-Has dystonia changed how often you take a very public role?
28.09% I am reluctant to be seen in public
21.35% I am not comfortable being interviewed on TV because of dystonia
14.61% I am not comfortable being interviewed on radio because of dystonia
24.72% I am not comfortable being on stage because of dystonia
8.99% Dystonia makes it a little harder for me to walk across a stage and not trip
30.34% I have decided to still have a public role if I need to, despite dystonia
5.62% unsure
30.34% not applicable ( 3A- 33)
-Have you ever been talked to in very slow speech as if you could not process
ideas quickly?
38.89% Yes
61.11% No ( 20B- 2)
-Have you ever been talked to in exaggeratedly simple words as if you could not understand big words?
27.78% Yes
72.22% No (20B-3)
-Has anyone avoided talking to you but addressed a person with you, as if you could not answer questions?
50.00% Yes
50.00% No (20B- 1)
-social situations
62.50% It is hard for me to sit still and comfortably at a barber’s
or hairdresser’s
25.00% It is hard for me to hold still for a manicured or pedicure
62.50% With any new barber or stylist I feel like I have to explain
the dystonia
37.50% It is hard for me to converse with someone because of my voice
37.50% It is hard for me to look directly at someone I am speaking with
50.00% It is hard for me to speak on a committee because of my voice
0% People have sometimes thought my involuntary nodding meant yes
75.00% People have mistaken my tremor for nervousness
25.00% I have had to cancel appointemetns because of dystonia
0% Dystonia has not affected my social interactions ( 25-21)
-Social comfort
50.00% I hesitate to look at people because of my dystonia
75.00% I hesitate to greet people or chat in person because of my dystonia
50.00% In a restaurant I sometimes use a napkin or hand to hide my face as I eat
25.00%I feel as comfortable socially as before dystonia ( 28-2)
(low number of respondents for this question)
18. financial challenges
-Has dystonia cost you a lot of money?
61.99% Yes
38.01% No ( 1-11)
-Has it cost you a lot of money to consult doctors?
21.43% No
46.43% Yes but with health care insurance it’s not a huge personal bill
32.14% Yes it has cost a lot of personal money (17A- 67)
-Has medication for dystonia cost you money?
48.00% Yes but I have medical insurance that covers much of the cost
16.00% Yes it has cost me a lot of personal money
32.00% No because I have not had to pay for much medicine
4.00% No because I can’t afford to get much medicine (17A- 69)
-Have heating pads, special equipment and other comfort devices cost you money?
3.85% Yes but I have insurance that covers much of the cost
42.31% Yes there has been significant personal cost
50.00% No I have not needed many such aids
3.85% No because I have not been able to afford such aids (17A- 70)
-Has physiotherapy or other treatment outside the doctor’s office cost you a lot of money?
14.81% Yes but I have insurance that covers most of the cost
51.85% Yes it has cost me a lot of personal money
33.33% No I have not had many such expenses (17A – 68)
-financial challenges
25.00% Doctor visits are free under my health insurance plan
37.50% I have to pay part or all of the cost of a doctor visit out of pocket
37.50% My medication and treatments are fully covered under my health
insurance plan
50.00% I have to pay part or all of the cost of my medications and treatments
out of pocket
12.50% One injection of botulinum toxin costs me out of pocket several
hundred dollars or more
0% I have not been able to afford some treatment the doctor recommended
12.50% I have chosen treatment based on what would cost me less money
(25-12)
-Have you had travel expenses to get treatment for dystonia?
48.15% Yes
51.85% No ( 17A- 71)
-Is your medical insurance giving you enough help with dystonia costs?
48.15% It has covered most of my costs
25.93% I still have to pay a lot personally
25.93% I do not have medical insurance (17A – 72)
-getting medical coverage for dystonia
25.00% In my country medical care is free
12.50% The process to get medical insurance is easy and efficient
0% The questions to get coverage are frustrating
0% It is hard to apply for disability because the interviewer was not
familiar with dystonia
12.50% It is hard to fill out the forms or do a phone interview precisely
because of the dystonia in my hands, neck or vocal cords
0% I have been denied coverage for some of my treatments for dystonia
0% I have had my disability claim turned down
25.00% I got my disability claim accepted but only after I had been turned
down earlier
50.00% not applicable (25-13)
(low number of respondents for this question)
I. Analysis of results
This optional series of questions on daily activities had high response. It is apparent that people feel this topic matters. It may be that the impact on daily life has been underestimated by some insurance companies given that a neck tilt or problem speaking might on the surface seem like a minor irritant only and that jerky motion is awkward but not really depriving a person of full mobility. These questions reveal that dystonia more than minor inconvenience for most people.
general effect
The biggest impacts on daily life:
66.53% energy and sleep
57.70% career options
51.54% walking, mobility
45.17% use of hands, dexterity, grip, handwriting
42.51% speaking
36.34% eating
27.52% dressing, bathing
Higher than all of those effects though possibly because of them was the impact on mood, optimism and sadness at 78.85%
The general survey (survey 1) asked all patients all questions so did not capture what type of dystonia is involved. Those with vocal cord dystonia would likely report higher impact on speaking and those with hand dystonia higher impact on dexterity)
sleep
Many clinical studies indicate that dystonia disappears during sleep. The surveys suggest a different observation. Some respondents do indicate a lessening of dystonia during sleep.
17.20% report their sleep is the same as before dystonia
25.00% say dystonia has not affected their sleep
20.99% say they still have a pretty good sleep most nights
13.26% say their dystonia is less at night
It may be that the problems with dystonia are lessened in deep sleep, but that getting to sleep or in stages of light sleep, the dystonia is still very active.
In deep sleep 40% say their pain is less, 40% say their muscle tightness is less and 40% say their spasms or tremors are less. 26% say their jerky involuntary movements are less in deep sleep. There is a separate study of sleep and dystonia in a later chapter.
At other points:
10.75% have more trouble getting to sleep due to pain and 19.3% have trouble getting to sleep due to spasms and other movements.
25.81% wake more often in the night due to pain or spasms which suggests that the dystonia wakes them
17.68% say they have only found one or two positions where they can finally sleep
14.00% say their dystonia is always intense even during sleep
12.15% say they are restless in the night
4.97% say they experience pressure and pain to go to one body position
6.63% say they adopt odd body positions in order to sleep
3.87% have spasms within minutes every time they try to change body position
(The general survey did not correlate the differing responses with type of dystonia. It is likely that vocal cord dystonia is less likely to produce jerky movements that interfere with sleep while those with painful neck dystonia may have very high rates of sleep disturbance. A better differentiated question series would have captured the patterns better)
eating
50% report their eating habits have not changed
44.68% have no trouble using a knife and fork
46.24% have no trouble eating cookies or other finger food
38.04% have no new challenges with swallowing or after swallowing
However many report there now are changes:
38.04% have sometimes nearly choked when eating due to swallowing problems
37.50% eat more slowly
25.0)% report that it is hard to prepare some foods due to dystonia
12.50% eat less quantity because of problems eating
7.89% – 12.50% sometimes skip meals because it is hard to eat
10.75% have trouble grasping or holding a cookie or other finger food
10.64% have trouble cutting with a knife and 18.09% have trouble moving the fork the mouth reliably.
14.04% – 17.02% have trouble chewing some food
24.47% -27.96% have trouble swallowing some food
15.79% are concerned their diet may lack some nutrients because of problems eating
10.53% use diet enhancers like protein powder or protein drinks
13.16% have lost weight
Weight itself may not be an indicator of eating concerns however since though 15.79% say their weight is unchanged, 36.84% report they have gained weight and 23.68% say they are on medication that can cause weight gain
drinking
43.7% report that the have no difficulty drinking beverages
However many report problems
17.71% find it hard to swallow some liquids
14.58% find it hard to hold a glass steady
13.54% find it hard to arrange their mouth to sip out of glass
dressing
Slightly over 50 % of respondents report they can still do up buttons (51.06%) a zipper (53.19%), or put a T shirt over the head unassisted (52.13%)
28.57% say they have not had to adapt their clothing choice due to dystonia
20.43% say it has not affected their choice of shoes and 30.11% say it has not affected their ability to put on or take off shoes.
However many report new challenges due to dystonia.
41.49% have trouble balancing as they get dressed
44.09% wear more practical shoes because of dystonia
42.86% say a shoulder strap triggers the dystonia
57.14% use a cross body strap to not have it slip off the shoulder
42.86% use a cross body strap to distribute its weight more comfortable
27.57% say a shoulder strap is sometimes painful and 19.67% say a shoulder strap often slips off.
15.05 % say it is hard to put the foot into the shoe
10.7% say it is hard to do up shoelaces
(Responses that a person can still do an activity may not suggest that all those who do not answer cannot do it. Framing a question about what a person can not do may be more statistically valid. It is not clear if respondents feel obliged to answer about what they still can do since they may just assume that is a norm)
bathing, dental, self-care, grooming
Though about a third of patients report they can still do their hair easily, (31.91%-34.04%) 40.43% say it is harder to do so and 9.57% say they can no longer do some of their own hair care.
Many people report they can still do their own dental care, brushing (68.09%) flossing (51.06%) manipulating the toothpaste tube (42.55%) 12.77% say that dystonia has made it harder to take care of their teeth.
44.09% say that they can still use a razor easily but 17.20% say that they have trouble now using one
reaching, grasping objects
Though 35.42% report they have no trouble looking up, down or reaching for objects others report at least one of these actions is difficult (10.42% – 12.50%- 32.39%)
36.08% report they can carry light objects but have trouble with heavy objects and 40.21% report that after they lift and carry objects the dystonia is a problem for a while
These reports suggest that people with dystonia not only try very hard to still accomplish desired daily tasks but do them despite some pain and challenge. It seems that dystonia does present a post -exertion phase where there is more pain. Anecdotally patients mention that the price of carrying groceries or raking the lawn will come the next day or so and they have to weigh costs and benefits before doing such actions.
sit, stand
-69.89% of respondents reported that it is hard to hold still to have a picture taken either due to pain, spasms or other movements.
-54.25% -62.50% report that it is hard to sit still at the dentist’s or barber’s or hairdressers due to pain, tremor or involuntary jerking movements and only 17.02% report that it is not hard to sit still as required.
23.91% report that it is easy to sit in a theatre to watch a two hour movie while 58.69% report that it is difficult or nearly impossible to do so.
walking, stairs, hills
26.15% report that they have not thought of their walking route differently due to dystonia
23.08% prefer walls, fences or posts to touch for balance
40.00% prefer not to have to use stairs
62.50% say they trip more often and 25% say they fall more often with dystonia
50% say they are more fearful of falling since dystonia
However 75% say they like a daily walk because it cheers them up
This suggests that people with dystonia endure significant pain and discomfort in order to still have a somewhat normal life and their ability to go for a walk is not evidence it is without difficulty.
speaking
37.23% say that dystonia has not affected their ability to speak,
39.56% say they have not had to change their speaking activities due to dystonia.
A survey more targeted to vocal cord dystonia would likely have higher reports of impact. It does seem that dystonia even of the neck or jaw can create challenges to forming the mouth shapes necessary for speech.
36.26% say they sometimes don’t say what they were going to because it is hard to speak
24.47% say people on the phone more often do not understand them since dystonia
12.77%-25.53% say they sometimes or often have trouble speaking
12.77% have trouble aligning their jaw
21.28% have trouble producing words loud enough
23.40% have trouble pronouncing some words
61.11% report they have become socially frustrated when they had ideas to contribute but it was hard to form words to speak
reading, watching TV
Many respondents reported new problems when reading a book
24.72% report that when they hold a book their body tenses up
42.70% have adjusted how they hold the book and 42.70% lean their head against something in order to read more comfortably 24.72% prefer to be seated when reading and 33.71% report they can’t read comfortably for as long a stretch of time as before dystonia.
housework chores
Though a majority of respondents still can vacuum (77.78%) and mow the lawn or shovel the snow (55.10%) a significant number are no longer able to do so with previous ease. 24.49% cannot mow the lawn or shovel as frequently or as thoroughly as before and 14.14% are unable to vacuum.
education, job
A minority reported no effect on education or job due to dystonia.
25.00% said it had nto limited their education options
However many reported significant impact
17.39% said they had to avoid some fields of study and 2.17% said they were denied entry into some classes because of dystonia
Many reported attempts to still have the paid job despite dystonia.
15.22% had to arrange their schedule to allow for the fatigue of dystonia
10.71% had to change their job role
8.79% had to reduce paid work hours
10.71% lost income
Many had to take time from the paid job, changed the job or lost the job
16.48% had to take time away from paid work due to dystonia
32.15%- 32,97% had to give up the job
2.20% were never able to have a paid job due to dystonia
hobbies, music, crafts
77.33% reported that dystonia had interfered with doing their favorite sport or hobby
69.23% reported that it interfered with their ability to play a musical instrument or pursue a hobby they love
sports
25.00 % reported dystonia had interfered with their ability to catch a ball and 28.13% with their ability to throw a ball.
These statistics are of interest because the first is about reaction time and possible delay, reach and grasp while the second is about range of motion and release. It seems that dystonia can affect those functions but possibly differently in different people. Clinical studies have found that bouncing a ball and catching it as it bounces off a wall is sometimes easy for people with dystonia. These phenomena bear study.
14.06% report that dystonia has affected their ability to golf and 25% their ability to bowl. The questions did not ask about other sports. Ability to play baseball, hockey, croquet have been reported as affected in clinical studies. Questions about those sports would have been useful.
swimming
These questions seem poorly framed with 40.91%- 80% reporting they did not swim or had never done much swimming and one question got few respondents.
The topic however merits study. Patients anecdotally report a wide range of responses to swimming, with some enjoying it and others unable to swim any more, with reported challenges to a sense of buoyancy, head control and breathing. Deep brain stimulation seems to also have an effect on swimming, generally making it difficult. These issues may suggest something very useful to know about dystonia balance, buoyancy and heaviness.
social effects
Many people report having less public role since dystonia with 28.09% reluctant to be seen in public, 24.72% not comfortable being on stage, 21.35% not comfortable being interviewed on TV and 14.61% not comfortable being interviewed on radio because of dystonia.
These statistics suggest not only low self-esteem and significant concern about public perception but also may hint at problems for the public in getting information about dystonia. If a large number of patients are unwilling to be seen in public, this may also mean they are unlikely to go public with the condition, to raise awareness about it in the public or even to take part in research studies.
Mundane daily functions that a person takes for granted are often impacted by dystonia. Being able t speak with a person, to look at them or take part in a group discussion is impacted .
75% hesitate to greet people or chat in person because of dystonia
50% say they hesitate to look at people
50% say it is hard to speak on a committee because of their voice
37.50% report it is hard to converse because of their voice
37.50% report it is hard to look directly at someone they are speaking with
0% said that dystonia has not affected their social interactions.
Some patients report awkwardness when others misunderstand their condition.
50% said that strangers have talked to the person with them not them.
38.89% said they have been talked to in very slow speech
27.78% said they have been talked to in exaggeratedly simple words
financial challenges
The financial cost to the patient is not a simple matter since it may depend on what type of dystonia they have, their location relative to treatment centres, the type of care they need and the type of care they want. It depends on the country they live in and the cost of health care there with the UK and Canada offering nearly free universal health care and other nations having a complex system of gradations of care and insurance coverage. The ability of some to afford care and equipment may also be a factor. These questions then are difficult to ask and could have been framed better.
Some people with dystonia experience such significant impact personally and financially that they apply for disability benefits. The standards for those benefits vary internationally. Asking a question about them may reflect more the national variations than the personal ones. However the results indicate financial consequences for many patients.
78.57% said that it has cost a lot to consult doctors
61.99% said that dystonia has cost them a lot of money
51.85% said that physiotherapy type treatment cost them a lot of personal money
48.15% say they have had travel expenses to get treatment for dystonia
48.00% said that medication cost a lot but medical insurance covered much of the cost
46.43% said health care insurance kept the personal costs lower
42.31% had personal cost for heating pads, special equipment and other comfort devices
25.93% – 32.24% said dystonia cost personal money
16.00% said medication cost a lot of personal money
3.85% – 14.81% said that insurance covered much of the cost
In terms of disability coverage 12.50% reported that it was hard to fill out the forms or do a phone interview because of the dystonia. 25.00% reported that the claim was accepted only after initially having been turned down.
Though 0% reported that they had not been able to afford some treatment the doctor recommended, 12.50% said they had chosen treatment based on what would cost them less money and 25.93% reported they do not have medical insurance.
Lived Experience With Dystonia 