Coping – Adjusting to Dystonia
A. Context
A key reason for the patient surveys project is to learn details of what life with dystonia is like. Accommodations that patients make may not seem important enough to ask a doctor about at a short annual visit. Yet their impact is significant. What patients are experiencing may hold clues to the nature of the condition itself – how it presents and when it is worse or better. The accommodations people make are in some ways scientific field tests at a micro level that may reveal secrets about dystonia itself.
Researchers have acknowledged a lack of information about the daily experience of dystonia. The surveys attempt to correct that, to fill the gap and to find patterns.
A survey of daily experience may also give patients a chance to think about the nature and rhythm of the dystonia and may help them feel heard, validated and possibly normalized for this usual condition.
Many patients have expressed real problems with daily function to the point that dystonia interfered with their career and income. The cost of medical care has for some been a hurdle that prevented some options for care. Even the cost of small accommodations like a bib or exercise equipment, a special pillow or back support or over the counter pills or creams can add up. Those who feel that they may qualify for disability benefits often find that they are denied those benefits because they the impact on daily life is not well understood by the insurer. The surveys of what people have to do to accommodate dystonia may actually help speed up and make fairer administration of those disability benefits.
Other surveys in this series also relate to coping
a. the situation dystonia presents – i.e the problem to cope with – are in the symptoms sections and the daily activities sections
b. surveys for individual body parts also touch on ways people cope
c. surveys about medical treatments, effects and side effects examine ways used to handle treatments and how to cope with effects of the treatments, good or less good
d. surveys about mood and outlook examine the psychological and emotional strategies people use to cope
e. surveys of alternative medicine treatments also look at what some patients are doing to cope
f. one survey looks at technology that may be useful to measure dystonia.
400BC – Hippocrates wrote of someone with a stiff and painful neck and suggested treatments of manipulation of the joints, massage, rest or traction on a wooden table.
B. What seems useful to study further
An attempt has been made to break down daily experience into sections that are easy to answer. There are questions about eating, drinking, bathing, dental care, self-care, clothing, transportation, distraction, equipment to assist, hobbies that are still possible, adjustments for sleep, for social contacts and for mobility.
The questions are asked to generate scientific insight. If a person finds that leaning against a wall helps, that suggests that balance is affected, that gravity is an bstacle to overcome with dystonia and that some aspect of the balance mechanism has been altered. If people have to use a spoon because the jaw clamps down on objects in the mouth with less control of the motion, this suggests that dystonia in the jaw delays body response to a voluntary action. If hot baths help, this suggests that warmth has a physical effect on sensation in affected areas and if buoyancy is comforting, this suggests that dystonia may affect perception of body weight. If golfers find that they can still do long shots but not putting, this may hint at what specific muscles and brain messages are affected. If people find that adjusting their computer screen to eye level helps reduce neck strain, this may suggest that in cervical dystonia the muscles to control neck position are very finely tuned and that dystonia is stronger at some specific angles than at others.
Medical researchers will understand what the coping strategies mean technically. It is for this strong belief that the questions are asked.
C. Comments from clinical studies and researchers
Patients often report that sustained or prolonged rest or activity worsens their dystonia
D. Comments from patient experience
appearance
I wore my hair long to hide my dystonia., It was a kind of shield.
clothing
Eyeglasses are for me a modesty tool so I don’t appear to be winking at people
I love wearing scarves, hats. They’re perfect for those with deviated necks
I now carry a waist pack not a backpack
I wore boots to give me more ankle support
computers
I’d be at the computer, one hand supporting the back of my head to not shake
I use a desk top not a laptop because I can’t look down easily
I adjusted the height of the computer screen to eye level
I got dark lighting for the computer screen
driving
I drive less often out of fear I’ll be stranded somewhere due to sudden spasms
eating, drinking
I use a thickening powder in my drinks to help me swallow them
I eat with a spoon and wear a smock to catch drips
If sipping wine makes my voice better, I plan public speaking between swigs
education, career
I was still able to finish my degree online
equipment for treatment
I bought a machine for neck massage with an instructional video
I have a gravity / immersion table and a massage table
We purchased a massage table and my husband helps massage me
I can tell I’ve had dystonia for a while when all my heading pads have split and leaked
exercises, sports
I got into running and it gives me peace of mind
I can still swim and snorkel
I now lift weights to get my muscles back
I began exercising at home on my stepper, do yoga and use a balance ball
I bought a home gym
I try to exercise and stay flexible so I don’t give pain a chance to start
Swimming really helps relieve my neck pulls
When my muscles pull one direction I try to counteract by pulling in the other direction
The stiffness and tension in my back and neck are less after I do stretches
The water’s buoyancy provided a level of independence that could not be achieved on land
When I felt my lower back starting to twist, I immediately flexed the back muscles I could control to offset the twisting movement
I learned that the harder I push dystonia, the harder it fights back
handwriting
Since it was in my right hand I learned to write with my left
I had a scribe to help me with my math exams
hobbies
I don’t suffer much while I’m working. It’s when I stop that it seizes up
I am now in an art group for the visually impaired
I enjoy crocheting now
I have learned to play bass guitar
I have taken up pottery making
I joined an art group
The joy of art I can still create outweighs the pain to make it
I try to distract my mind from the dystonia
My work helps me not concentrate on dystonia
I now paint miniature models as a hobby
I now find it more relaxing to look down than to look at screens
I enjoy gardening
I now foster dogs
I now do artwork
I enjoy reading again as a hobby
housework, chores
I only lift light objects and can’t carry things much
music
Music is good therapy and I wear headphones to have it on low but always there
self-care – makeup, bathing, dressing
I found that hot showers make dystonia more bearable
sleeping
I wear a mouth guard at night so my teeth won’t chatter
Power napping helped relieve the tremors
Sleep seems to cut off all the impulses from the brain in the motor pathway
social
At meetings I try hard not to seem shaky and distracting
My friend now asks where I want to sit at the table so I can see people
speaking
A tape recorder became my voice
I have learned that I must face adults directly and try to speak slowly if I am to be understood
standing, walking, mobility aids
To control my neck and shoulder spasms, I’d stand with my head against a wall
I was wall -walking for balance, each hand on a wall on either side of the hallway
Now, walls are my friends
I can’t see ahead to walk unless I hold my chin with my hand
Getting my own mobility scooter was a great day and gave me back my independence
I use a wheelchair even though I can sort of walk, to save strength for fun things
I use a child’s stroller in front of me to help me walk upright
In a grocery store I always use a cart even to buy 2- 3 items
We plan ahead for places where I can sit and take a break
E. How to ask
Source of question ideas:
patient experiences, social media postings, biographies and some clinical studies
F. Question categories
general
altitude
bathing, dental, self care
beverages
body position – sit, stand, lean
car, bike, trike
clothing
computer adjust
covid
distraction
exercise, stretch, swim
financial consequence, career
food
head, cold
housework
massage, pressure, touch
med coverage, disability claims
music, dance
pacing your tasks
respiration adjust
rest, nap adjust
sleep, pillow, position, temp noise
social eg talking
walk adjust
G. Questions asked -survey number, question number
surveys 13, 34
H. Results
13 35 coping 20 53 80 6
34 5 coping 13 18 82 2
max no. respondents 35
total questions 71
likely type of dystonia all
percent of all respondents doing survey 35 of 508 or 6.9%
I. 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. bathing, dental, self-care
-Are there things you look forward to daily that reduce your discomfort and that you look forward to, like a hot bath or a nap deep breathing?
60.75% Yes
39.25% No (1-20)
-Does a salt bath help with the dystonia?
25.81% Yes
22.58% No
41.94% unsure
9.68% not applicable (13-45)
-Do you prefer to have bathtub or shower stall bars to help you balance?
15.63% Yes, always
12.50% Yes sometimes
21.88% I would like them but don’t have them
31.25% No, I don’t need them
18.75% not applicable ( 13-39)
-These questions ask about baths, showers and self-care
28.57% A hot bath or shower reduces my spasms
71.43% A hot bath or shower makes me feel good
28.57% A hot bath or shower does not help with my dystonia
14.29% I have modified my shower stall or sprayers due to dystonia
14.29% I use bathtub rails or handles to help with dystonia
14.29% With dystonia it is harder to clip my fingernails
42.86% With dystonia it is harder to clip my toenails
28.57% I have not had to change my self-care because of dystonia (25-2)
-These questions ask about baths
60.00% A warm bath helps me
0% A warm bath with lavender helps me
40.00% Adding epsom salts to the bath helps me
0% I sometimes fill the bath deep to simulate and pool and feel buoyance
40.00% none of the above (34-7)
-Have you changed your hairdo or arranged hats or scarves to mask the dystonia?
4.35% Always
26.09% Often
69.57% No (17B- 12)
2. stationery body position- sit, stand, lean
-When standing do you like to lean against something to stay stable?
31.91% Yes, nearly always
27.66% Yes sometimes
26.60% No. I am comfortable not leaning on objects when I stand
0% unsure
13.83% not applicable ( 3A-17)
-Since dystonia so you more often prefer sitting to standing?
38.04% Yes nearly always
23.91% Yes sometimes
23.91% No. I am comfortable in either position
14.13% not applicable (3A- 18)
-When you sit do you prefer to sit slouched so you can lean your head back?
38.30% Yes usually
27.66% Yes sometimes
14.89% No
3.19% unsure
15.96% not applicable (3A- 20)
-These questions ask about comfort sitting
80.00% During the day I get up and move around a lot to not get stiff
60.00% I slouch down in a chair so I can lean against the chair back
20.00% I have a neck support for the back of my chair
20.00% I use a recliner chair
20.00% The dystonia has not required me to adjust my seating (34-2)
-Do you prefer to sit at the back of a hall so you can rest your head against the wall?
53.26% Yes
22.83% No
23.91% not applicable (3A-23)
3. clothing, covid
-Do you now prefer to wear loose clothes?
62.50% Yes
37.50% No (13-1)
-Have you developed special strategies to dress yourself?
56.25% No. I have not had to make any adjustments dressing
37.50% I sit or lean on objects more often as I dress
6.25% I use shoe horns
25.00% I prefer shirts and tops with few buttons
3.13% I have special orthotic shoes because of dystonia
0% I am unable to dress myself unassisted (13-3)
-clothing adjustments and dystonia
0% Fitted socks help me with dystonia
60.00% I wear looser clothes because of dystonia
0% I sweat so much that I have to change my shirt during the day
40.00% I more often wear sturdy shoes because of dystonia
20.00% I have not had to change my clothing choices because of dystonia (34-5)
-Are you more particular now about your shoes?
32.35% No, I have not changed my shoe style because of dystonia
52.94% I prefer loafers, runners and casual shoes
14.71% I prefer shoes that I do not have to lace daily
17.65% I prefer sturdy shoes with stiff soles
26.47% In winter I prefer boots with rough non skid soles
23.53% I do not wear flip flops
23.53% I prefer shoes with wide heels not tiny high heels (13-2)
-covid masks and dystonia
25.00% The mask keeps me warm and I feel comfortable in the wind or cold
25.00% The mask adds pressure to my cheek and helps with the dystonia
like a sensory trick
100.00% The mask fogs up my glasses
75.00% The mask makes it harder for people to hear or understand what I say
0% The mask makes me feel dizzy
25.00% The mask helps me hide some of the oddity of my dystonic posture
25.00% The mask tends to slip off my face because of my body tilt
25.00% The mask tends to push up and block my vision because of my
body tilt ( 34-6)
(low number of respondents to this question)
4. eating- food
-Have you adjusted your eating habits due to dystonia?
13.64% I prefer using a bowl to a plate
13.64% I prefer using a spoon to a knife and fork
29.55% I bring the bowl or plate closer to my chin
7.95% I wear a bib sometimes
14.77% I avoid eating in front of people even at home
12.50% There are only a few foods I can eat easily in a restaurant
9.09% I no longer eat in restaurants
5.68% unsure
44.32% not applicable ( 3A-10)
-public eating habits
11.11% At home I eat apart from others do they don’t have to watch me
8.33% At home I sometimes wear a bit when eating
8.33% There is only a small range of food I can eat easily in restaurants
2.78% I no longer eat in restaurants but just socialize and wait till I go home
16.67% I do not go out to restaurants any more
2.78% unsure
63.89% not applicable ( 7-12)
-When eating do you put the bowl closer to your chin to avoid spilling?
9.38% Yes often
43.75% Yes sometimes
46.88% No (13-7)
-Do you prefer to use bowls not plates to scoop up food easily?
9.38% Yes always
31.25% Yes sometimes
59.38% No. I can use a knife and fork well (13-6)
-Do you use a bib or apron to protect your clothing as you eat?
0% Yes always
18.75% Yes sometimes
81.25% No (13-5)
-Have you figured out foods you can still eat in public?
42.86% Yes and those who love me often help with that
42.86% Yes but it’s tricky
28.57% No. I avoid eating in restaurants now (17B-13)
-Do you put sauce on food to make it easier to eat?
12.12% Yes often
6.06% Yes sometimes
51.52% No or if I do it it is not for ease of eating
30.30% not applicable ( 13-4)
-Does eating bananas help with the dystonia?
6.06% Yes it seems to help
72.73% It does not seem to make a difference for me
21.21% not applicable (13-10)
-foods
0% A gluten free diet has helped me with dystonia
0% Eating yogurt has helped me
0% Pickle juice has helped reduce my leg cramps
0% Eating dry cookies is an easy way to deal with jaw problems
0% Eating chocolate seems to give me natural endorphins
100.00% I have not found any food that helps with dystonia ( 34-8)
(low number of respondents to this question)
-cooking and food preparation
2.86% I use a blender more now
8.57% I use a food chopper more now
8.57% I now eat more mashed and cooked foods and fewer raw fruits
and vegetables
22.86% I now avoid food that needs a lot of chewing, like steak
65.71% I have not had to change my food choices or preparation because
of dystonia
2.86% unsure
11.43% not applicable ( 7-21)
5. drinking, beverage
-beverages
20.00% Wine temporarily reduces the dystonia
20.00% Alcohol such as vodka briefly reduces the dystonia
40.00% Alcohol causes me rebound tremors the next day
20.00% Lavender, peppermint or camomile tea reduce the dystonia
0% Tonic water reduces dystonia pain
0% Tonic water reduces leg cramps
0% Tonic water makes my dystonia worse
0% Caffeine reduces the dystonia
0% Caffeine makes my jaw tighten
40.00% My dystonia is less if I stay hydrated
20.00% not applicable (34-9)
(low number of respondents to this question0
-Do you adjust to dry mouth by drinking water or other fluids more often?
57.58% Yes I drink water more often
6.06% I have dry mouth but do not drink fluids more often
36.36% not applicable (13–8)
-Have you adjusted your use of caffeine because of dystonia?
50.00% I have not changed my use of caffeine
26.47% I have reduced my use of caffeine because of tremors or other
features of dystonia
8.82% I have increased caffeine to combat drowsiness or other concerns
with dystonia or its treatment
14.71% not applicable (13-9)
-Does having a glass of wine affect the dystonia?
32.35% Wine seems to reduce the dystonia for a short time
5.88% Wine seems to reduce the dystonia for quite a while
8.82% Wine seems to make the dystonia worse
14.71% Wine has no effect on my dystonia
38.24% not applicable (13-11)
6. read, computer
-Do you have home access to the Internet?
95.24% Yes
4.76% No (17B- 59)
-Have you adjusted your computer sitting position to accommodate the dystonia?
64.13% Yes
22.83% No
13.04% not applicable (3A-31)
-technology use
25.00% I use a handrest at the computer
50.00% I have adjusted the height of my chair, computer monitor or
TV screen because of dystonia
50.00% It is exhausting to hold my head to look at a computer
monitor or TV screen
25.00%It is easier for me to look down at a laptop than across at a computer
monitor
37.50% It is easier for me to look across at a monitor than down at a laptop
0% Because of dystonia in the eyelids I cannot open my yes much to see
a computer screen
25.00% Dystonia has not affected my use of technology (25-7)
-use of computers and tech devices
60.00% I have adjusted my desk height, height of chair or height of my monitor
60.00% I have adjusted my wrist pad, mouse or keyboard because of dystonia
20.00% I have changed the type of computer I use, desktop or laptop
60.00% I put the cel phone on speaker often so I don’t have to hold it to my ear
40.00% To not stiffen up or tire, I get up from the computer and walk
around frequently
20.00% I sometimes wear a neck cushion when I am using the computer
20.00% not applicable (34-11)
7. housework
-housework and dystonia
71.43% I still do laundry and can carry clothes and fold and iron them easily
71.43% I still sweep the floor and vacuum
57.14% I still take out the garbage and carry in the groceries
57.14% I still rake the leaves, shovel the snow and do minor yard work
42.86% I have problems doing the above tasks but I still do them
28.57% I have reduced doing the above tasks and do them less often now
42.86% I get help from others to do some of the above tasks
57.14% The dystonia is worse when I do the above tasks
57.14% The dystonis is worse after I do the above tasks (25-14)
-If raising a heavy load hurts. do you stop and get help now?
65.22% Yes
34.78% No, I still try to do it alone ( 21-2)
8. pace of action – slower rate
-Do you make little adjustments to get through the day?
66.67% Yes I have a good little rhythm now to my day
33.33% Yes but it’s a struggle
0% I am still very upset each day (21-14)
-How do you approach tasks knowing the dystonia is part of what you have to allow for?
4.17% I push myself to still reach all the goals
66.67% I pace myself and have the same goal but may take just a bit
longer to get there
29.17% I have given up on many former goals (21-21)
9. rest, nap, relaxing
-Do you nap more often since the dystonia?
29.79% Yes, nearly every day
26.60% Yes, once in a while
43.62% No (3A-26)
-Do you use any relaxation strategies to help with dystonia?
61.29% I do deep breathing exercises
32.26% I take a nap most days
38.71% I try visualization of restful scenes or pleasant memories
32.26% I use meditation
16.13% not applicable (13-40)
-To relax, does it help to name each body part and intentionally tense then relax it?
9.38% Yes, that often helps
21.88% Yes that sometimes helps
53.13% No that has no effect for me
15.63% not applicable (13-48)
-To relax does it help to imagine each body part getting heavy like a cement statue?
3.03% Yes that often helps
33.33% Yes that sometimes helps
51.52% No it has no effect for me
12.12% not applicable (13-49)
-To relax does it help to imagine each body part getting light and floating?
3.13% Yes that often helps
28.13% Yes that sometimes helps
53.13% No, that has no effect for me
15.63% not applicable (13-50)
-Does it help you relax to have a fan circulating air near you?
16.13% Yes it helps me relax
41.94% It makes no difference to my ability to relax
9.68% It keeps me from being able to relax
19.35% unsure
12.90% not applicable ( 13-41)
10. sitting and walking adjustments
-Have you adjusted how and where you walk due to dystonia?
60.61% I am less ambitious and walk shorter distances
9.09% I walk with a wider gait for balance
6.06% I use a walker or cane most of the time
10.61% I use a walker or cane sometimes
28.79% I sit down and take breaks more often when I walk
42.42% I walk more slowly than before dystonia
18.18% I have not changed my walking habits due to dystonia
1.52% unsure
9.09% not applicable (3B-1)
-Have you changed your walking preferences regarding other people?
20.00% I find it useful to hang onto someone’s arm now
27.69% In a narrow hall I prefer to walk behind not in front of someone
I am walking with
33.85% It is harder to coordinate my movements as I try to pass someone
or avoid someone coming towards me
35.38% I like a wider berth to not bump into people or objects
13.85% unsure
30.77% not applicable (3B-2)
-In a grocery store do you use a cart more often since the dystonia?
34.38% Yes it helps me walk in a straight line
43.75% Yes it helps me balance
6.25% Yes it helps me with my tremors
56.25% Yes so I don’t have to lift or carry items
15.63% No. I don’t use a cart more often since dystonia
15.63% not applicable (13-36)
-Do you use handrailings more often on stairways since dystonia?
54.84% Yes always
16.13% Yes sometimes
29.03% No (13-38)
-These questions ask about things you find you are doing to adapt to the dystonia
50.00% I find I am walking more slowly noiw
33.33% I find I am walking with wider gait now, for balance
50.00% I find I am standing with feet farther apart now, for balance
16.67% It feels like my body is adapting positions and motion in a healthy
logical way to try to compensate for the dystonia
11.11% I approach all motion challenges the same way I did before dystonia
0% I only change my motion plan intentionally and there is nothing
subconscious about it
27.78% It seems like my motion is a mix of what I choose to do and what
I automatically do subconsciously, so two ways to handle dystonia
16.67% unsure
11.11% not applicable ( 20A-29)
-walking
25.00% It is easier for me to walk if I bounce a bit
0% It is easier for me to talk if I hold something balanced in my hands
25.00% Walking is easier if I swing my arms
75.00% not applicable (34-12)
(low number of respondents to this question)
11. lying down, sleeping, pillows
-Does it help to have a soft pillow against your dystonic muscle at night?
48.39% Yes
51.61% No (13-35)
-Have you changed your pillow choice or arrangement because of dystonia?
60.61% Yes and pillow arrangement matters a lot to me now
30.30% No, my pillow needs have not changed
9.09% not applicable (13-47)
-Does it help to have your window open at night to get fresh air?
36.67% Yes usually
43.33% An open window makes no difference to me
10.00% No, fresh air can disrupt my comfort
10.00% not applicable (13-42)
-Do you sleep better if there is a constant noise like a furnace or electric fan?
32.26% Yes it helps
41.94% No it makes no difference to my sleep
16.13% No, it interferes with my sleep
9.68% unsure (13-43)
-What is your feeling about alarm clocks to wake you from sleep?
41.94% I like to use an alarm clock
35.48% I do not like to use an alarm clock
22.58% I do not use an alarm clock (13-46)
-sleep comforts and equipment
25.00% I like to have pillows or a soft brace touching my skin
87.50% I use a special pillow strategy- eg memory foam, feather,
double pillow
0% A heavy or weighted blanket helps me
37.50% A heavy or weighted blanket feels too constricting for me
75.00% I sleep best with silence, no radio or TV or voices nearby
25.00% I sleep well with soft music, sound of waves, lulling voice on tape
75.00% I sleep well with lights off, dark curtains, tech devices turned off
12.50% I sleep well with a vibration near me like on a train or airplane (25-19)
-things that help you sleep or don’t help
12.50% It helps me to listen to audio books
0% Audio books sound like jabbering monkeys and irritate me
0% When I can’t sleep it helps to imagine looking at a black hole
25.00% When I can’t sleep it helps to write down new ideas
such as hot rod designs
50.00% I sleep better if I have not had caffeine recently
25.00% I sleep better if I have not had a big meal in the last few hours
25.00% I sleep better if I had warm milk before bed
12.50% not applicable (25-20)
-pillow preferences
0% Pillow arrangement does not matter much to me
60.00% With dystonia, pillow arrangement has become very important to me
0% I cannot use a pillow
60.00% I really need the neck support of a pillow
0% I travel with an inflatable pillow
0% I use a special pillow eg memory foam, 2 layer, down, foam,
water-filled, indented
20.00% not applicable (34-4)
(low number of respondents to this question)
-comfort lying down or sleeping
20.00% The dystonia has not required me to adjust my sleeping position
20.00% A dark room relaxes me
0% I prefer to be in a semi-reclined position when I lie down
0% Sleeping on the floor reduces the dystonia
20.00% I often deep breathe to help me get to sleep, breathing in
the nose and out the mouth
60.00% I have not found a strategy that makes my lying down position
comfortable (34-3)
(low number of respondents to this question)
12. exercise
-If the muscle has lumps, knots of rope-like feelings does exercise help reduce those?
14.42% Yes it seems to reduce them
33.65% It has no effect on them
21.15% unsure
30.77% not applicable (2A-6)
-Have you found relief through massage, exercise or nearby vibrations?
71.33% massage (brings relief)
53.92% exercise (brings relief)
12.97% nearby vibrations (bring relief) (1-21)
-Do you use weight bearing as an exercise?
32.26% Yes
67.74% No (13-24)
-Do you exercise using theraband strips, balls, foam rolls or other equipment?
40.63% Yes
59.38% No (13-23)
-What are your goals when you exercise?
50.00% I want to keep my muscles limber, even the dystonic one
59.38% I want to maintain my range of motion
43.75% I want to get my brain used to the wider range of motion
40.63% I think stretching the muscle might lessen the dystonia
28.13% not applicable (13-16)
-Do you also on purpose exercise nondystonic muscles?
64.52% Yes
35.48% No (13-19)
-How intensely do you do physical exercise?
30.77% I do it for a few short sessions several times a day
7.69% I really work hard at it, over an hour each day
3.85% I push myself even if there is intense pain
84.62% I am careful to not overwork the muscles and I increase the pace gently
if at all (13-17)
-Is kneeling on hands and knees helpful for your dystonia?
6.06% Yes
48.48% No
24.24% unsure
21.21% not applicable (13-21)
-exercise
25.00% Stretching my dystonic muscles is a bit painful
0% Stretching my dystonic muscles does not hurt
25.00% It feels like stretching my dystonic muscles over time is good for them
37.50% It feels like stretching my dystonic muscles makes them hurt more
0% Exercise reduces my cramps
37.50% It helps to massage my muscles after exercise
62.50% Gentle stretching hurts less than stretching to the extreme position
25.00% not applicable (25-11)
-exercise
60.00% Exercise makes my body feel good
20.00% Exercise makes my body stiffen or freeze up
40.00% Exercise makes my body go into spasms briefly
0% Weight workouts make me feel better
60.00% Weight workouts make me feel worse
0% It helps if I exercise using a foam roll behind my back
0% Using a treadmill makes me feel good
0% An elliptical or stationery bike reduces my dizziness or fear of falling
60.00% When exercising I find it best to go gently, and ‘less is more’
20.00% It helps me to stretch the dystonic muscle
40.00% It helps if I push down a bit on the dystonic muscle (34-10)
(low number of respondents to this question)
13. heat, cold
-What is your experience with applying temperature to the dystonic muscle?
7.89% A cold compress helps
1.58% A cold compress has no effect
1.05% A cold compress makes it worse
45.79% Heat helps -hot water bottle, heating pad, hot bath
5.26% Heat has no effect
1.05% Heat makes it worse
6.84% A moist warm towel works better than a dry warm towel
17.37% unsure
13.16% not applicable (2A-29)
-Does heat on the dystonic muscle help?
63.64% Yes
27.27% No
9.09% not applicable (13-34)
-Does a hot bath or shower relieve the dystonia?
25.81% Yes, that is one of the best parts of my day
41.94% Yes it helps a little bit
25.81% No it does not help with the dystonia
6.45% No, hot baths or showers are uncomfortable for me (13-51)
-Does a cold compress reduce the tightness?
15.63% Yes
46.88% No
31.25% unsure
6.25% not applicable (13-33)
-temperature and dystonia
50.00% Hot baths and heating pads help me with dystonia
0% Hot baths and heating pads have no effect on my dystonia
12.50% Hot baths and heating pads make my dystonia worse
0% I use a heated mattress because of dystonia
50.00% A hot tub relaxes me
0% A hot tub makes me feel dizzy and sick
25.00% not applicable (25-16)
-These questions ask about things you have tried for pain
20.00% I do not have pain with dystonia
60.00% I sometimes for pain use a heat cushion, heating padi, hot water
bottle or rice sock heated in the microwave
0% I sometimes for pain use an ice pack
0% I sometimes for pain use moist heat – eg. a wet towel from the microwave
0% I sometimes for pain use moist cold – eg a cold washcloth
20.00% I sometimes for pain use a skin cream – eg. one with magnesium
0% I sometimes us a pain relief powder
0% I sometimes use pain patches
20.00% not applicable (34-1)
(low number of respondents to this question)
14. mobility
-What is the effect on you as you go for a walk?
51.52% I love to get out and see the world even if there’s some discomfort
27.27% It feels good to stretch the muscles
51.52% It is real work to walk and exhausting
27.27% It is a little embarrassing for how I may look as I walk
51.52% It cheers me up to walk
6.06% not applicable (13-15)
-driving a car and dystonia
37.50% I can still drive normally
37.50% I use mirrors more because it is harder to do shoulder checks
50.00% It is harder for me to look in the back seat
25.00% For long distances, I sometimes use a soft neck brace or cushion
when driving
50.00% I fear losing my ability to drive
37.50% I drive shorter distances because of dystonia
25.00% I have given up driving
12.50% not applicable (25-3)
-If you have a wheelchair, have you put on a carrier pack to help transport items?
6.25% Yes
3.13% No
90.63% I don’t use a wheelchair (13-53)
15. practical activities
-If handwriting is difficult have you practised writing other ways?
12.50% Yes with the other hand
31.25% Yes with another instrument, eg. thicker pen or chalk
18.75% Yes with another writing style like shorthand not printing
6.25% Yes by writing with the toes
37.50% No
31.25% not applicable (20A-32)
-When something falls on the floor, how do you usually pick it up?
41.38% I bend at the waist and reach down to get it
37.93% I bend my knees and reach out to get it
20.69% I have real trouble getting it at all (13-22)\
16. distractions, hobbies
-Are there activities you do that make the dystonia bother you less for a while?
25.00% It is less when I listen to music I like
12.50% It is less when I am at the computer for a while
15.63% It is less when I watch TV for a while
6.25% It is less if I paint
9.38% It is less if I am working in the garden
46.88% Nothing I do makes the dystonia seem less
40.63% Even if I find an activity that helps, I can only do it for an hour
or two because of the dystonia discomfort (13-52)
-Can you still do things around the house you like, such as baking, gardening?
95.00% Yes
5.00% No (17B-63)
-Do you watch funny videos or movies?
90.48% Yes
9.52% No (17B-58)
-Are there crafts or hobbies you can still do?
85.00% Yes
15.00% No (17B-61)
-Do you have access to books you would like to read?
100.00% Yes
0% No (17B- 60)
-Are there classes nearby that you could enjoy?
50.00% Yes
50.00% No (17B-64)
-Are there online classes you could enjoy?
65.00% Yes
35.00% I am not interested in any right now (17B-65)
-How much interest do you have in community and national and world news?
4.17% I really don’t have much interest in them
54.17% I still am interested in what is going on
41.67% I make a special effort to know what is going on (21-33)
17. massage, touch
-What is your experience of touching the dystonic muscle?
15.79% It hurts to touch and is not helpful
30.53% It hurts to touch but somehow brings me relief to touch it
37.89% There is no effect when I touch it
8.95% unsure
9.47% not applicable (2A-30)
-Does it help if you rub the dystonic muscle?
50.00% Yes
50.00% No (13-18)
-Does having the muscle gently lifted and manipulated help?
35.48% It seems to
22.58% No, it does not seem to
41.94% inapplicable (13-26)
-Are your dystonic muscles deep down and hard to reach?
46.88% Yes I have been told they are
18.75% No they seem on the surface
34.38% unsure (13-25)
-Does it help to massage the opposite muscle from the one affected. eg
right side of the neck when the left is tense?
9.68% Yes it seems to help
38.71% No it does not seem to help
29.03% unsure
22.58% not applicable (13-27)
-Have you found that dystonia pain is less for a second if you apply gentle pressure to any other area of your body?
25.00% Yes
75.00% No (20A-35)
18. music, dance
-Does dancing seem to reduce the dystonia?
21.88% Yes
43.75% No
34.38% not applicable (13-31)
-If playing music is important to you and dystonia affected it, how have you adjusted?
16.67% I changed the instrument or adapted it but still play
83.33% I still listen and enjoy the music but don’t play (21-23)
19. respiration – deep breathing
-What effect does deep breathing have on your dystonia?
17.58% A few deep breaths really relax me
7.69% Deep breaths sometimes cause me gentle spasms but they are a bit of
a relief
15.93% It is hard for me to relax enough to take deep breaths
40.11% Deep breaths have no effect on my dystonia
16.48% unsure
6.04% not applicable (2A-39)
-Have you found that taking a deep breath when you are in dystonic pain helps create a nontension message to your brain?
43.75% Yes
56.25% No (20A-38)
-Have you found that some relief messages can override the pain message for you?
68.75% Yes
31.25% No (20A-34)
-Do you deep breathe, gently move around and talk yourself down from some situational tension so that you only have to deal with dystonia tightness?
68.75% Yes
31.25% No (20A-41)
20. social adjustments
-social interaction and dystonia
0% It helps others undersand me if they see other people with dystonia
in a waiting room
40.00% Having dystonia has brought out a very caring side of my family
and friends
20.00% I have sometimes had to leave a room, to, in private let myself
have shakes full blown
100.00% I have had to accept that some people can’t handle the idea
I have dystonis (34-18)
(low number of respondents to this question)
21. financial adjustments
20.00% I do not feel my dystonia is at the level of a disability
20.00% I applied for disability coverage and got it quickly and easily
0% I was turned down for disability coverage
20.00% I was turned down several times for disability coverage
before I got it
20.00% I hired a disability advocate to work with me to make claims
40.00% not applicable (34-17)
(low number of respondents to this question)
-medical insurance coverage
0% I have had to apply several times for coverage of some items
0%I have changed insurance plans or insurers because of dystonia
0% I have had to hire a worker’s compensation lawyer to get benefits
100% none of the above (34-16)
(low number of respondents to this question)
22 sports, swimming
-Are there sports you still enjoy, either playing or watching?
36.84% Yes
63.16% No (17B-62)
-Do you swim regularly?
12.90% Yes, swimming seems to help with the dystonia
9.68% Yes but swimming does not affect the dystonia
12.90% No, for some reason swimming is harder for me with dystonia
45.16% No I have never been a swimmer
19.35% not applicable (13-30)
-swimming
0% Being in water seems to take weight off my neck
0% Aquatic therapy helps me
0% I prefer a heated swimming pool
0% Swimming reduces my pain
0% Swimming calms my muscles
0% Swimming reduces spasms
50.00% Swimming is not pleasant for me because of dystonia
0% On a hot day I like to be in salt water
50.00% none of the above (34-13)
(low number of respondents to this question)
23. pets
-Do you have a pet?
61.90% Yes
38.10% No (17B-70)
-Does the pet make you feel needed?
75.00% Yes
25.00% No (17B-72)
-Does the pet give your day purpose and schedule?
75.00% Yes
25.00% No (17B-71)
-Does walking a dog on a leash help correct your balance and reduce falling?
6.45% Yes it helps with my balance
19.35% No, it does not affect my balance
19.35% No it even pulls me off balance
54.84% not applicable (13-32)
-Do you find it reassuring to listen to a person or pet sleeping near you?
38.71% Yes sometimes
29.03% No, it makes no difference to me
16.13% No it interferes with my sleep
16.13% not applicable (13-44)
J. Analysis
The surveys indicate that dystonia presents many challenges to daily function but the survey on coping suggests that many patients are creative about how they cope, and are determined to do so.
It is possible that those who fill out surveys are more likely to be pro active and are seeking information and medical insight by definition.
bath and shower adjustments
28.13% prefer bathtub or shower stall bars for balance, always or sometimes
14.29% have modified their shower stall or sprayers due to dystonia
13.29% use bathtub rails or handles
position adjustments
80.00% move around a lot during the day to not get stiff
61.95% prefer sitting to standing sometimes or nearly always
60.00% slouch down in a chair to lean against the chair back
59.57% like to lean against something when standing sometimes or nearly always
53.26% prefer sitting at the back of a hall to rest their head against a wall
20.00% use a neck support for the chair back and 20.00% use a recliner chair
walking adjustments
70.97% use handrailings more often on stairways due to dystonia
60.61% walk shorter distances now
56.25% use a grocery cart now to not have to carry items, 34.38% to help
them walk in a straight line, 43.75% to help them balance
51.52% cheer up on walks, love to see the world, but find it exhausting
42.42% walk more slowly now
35.38% like a wider berth now to not bump into people or objects
33.85% find it harder to coordinate movements near other people
28.79% sit down and take more breaks as they walk now
16.67% use a walker or cane sometimes or most of the time
clothing and shoe adjustments
60.00% – 62.50% now prefer to wear loose clothes
52.94% prefer loafers, runners and casual shoes and 23.53% do not wear flip flops
40.00% more often wear study shoes
37.50% now sit or lean on objects more as they dress
23.53% prefer shoes with wide heels not tiny high heels
17.65% prefer sturdy shoes with stiff soles
14.71% prefer shoes they do not have to lace daily
eating adjustments
9.38%- 29.55%- 43.75% put the bowl or plate closer to their chin now
42.86% have had to figure out foods they can still eat in public
40.63% prefer bowls not plates to scoop up food sometimes or always
28.57% avoid eating in restaurants now
22.86% avoid food that needs a lot of chewing
7.95%- 18.75% use a bib or apron sometimes or always
18.18% put sauce on food to make it easier to eat, often or sometimes
8.57% use a food chopper more and eat more mashed, cooked foods and fewer raw
handwriting adjustments
31.25% have tried using a thicker pen or chalk
18.75% have tried another writing style like shorthand not printing
12.50% have tried writing with the other hand
6.25% have tried writing with the toes
technology adjustments
60.00% have adjusted their desk height, chair height, wrist pad or keyboard
60.00% put a cel phone on speaker so they don’t have to hold it to the ear
50.00% have adjusted chair, computer monitor or TV screen because of dystonia
20.00% sometimes wear a neck cushion at the computer, or changed type of computer
housework accommodations
57.14% report that their dystonia is worse during or after doing household chores
42.86% have problems doing laundry, sweeping, vacuuming, taking out garbage,
carrying in groceries. raking leaves or shovelling but still do them
28.57% have reduced doing household chores or do them less often
20.69% have trouble picking up an object that falls to the floor at all
pace, rest and nap adjustments
66.67% pace themselves to reach the same goals but go more slowly
26.60%- 32.26% take a nap once in a while, most days or nearly every day
29.17% have given up on many former goals
car driving adjustments
50.00% find it harder to look in the back seat
37.50% drive shorter distances, use mirrors more
25.00% for long distances sometimes use a neck brace or cushion
25.00% have given up driving
music, dance, hobby adjustments
40.63% find that a hobby helps distract them but only for an hour or two
because of dystonia discomfort
varied results of some coping strategies
Though there seem to be patterns in what heps there are also outliers, and for nearly any treatment there are some who find it has no effect and a small group that finds that treatment actually makes the dystonia worse.
Studies of dystonia in recent years have identified not just sensory tricks where the condition is suddenly nearly gone, but also a category called ‘reverse sensory tricks’
There the action that helps some actually for others makes things worse. The designation ‘reverse sensory trick’ may merit nuancing since it does not seem a ‘trick’ but more of an lack of positive result. IT may be that those variations present a window into understanding dystonia were it known the precise type and presentation of the dystonia of the people involved.
Some of these variations include:
heat
it helps
71.43% say a hot bath or shower makes them feel good
63.64% say that heat on the dystonic muscle helps
60.00% say a warm bath helps
50.00% say that hot baths and heating pads help
50.00% say that a hot tub relaxes them
45.79% say that heat helps -hot water bottle, heating pad, hot bath
41.94% say that a hot bath or shower helps a bit to relieve the dystonia
28.57% say a hot bath or shower reduces spasms
25.81% say that a hot bath or shower is one of the best parts of their day
25.00% report they sleep better if they had warm milk before bed
6.84% say that a moist warm towel works better than a dry warm towel
it has no effect
28.57% say a hot bath or shower does not help with the dystonia
27.27% say that heat on the dystonic muscle does not help
25.81% say that a hot bath or shower does not help with the dystonia
5.26% say that heat added to the dystonic muscle has no effect
it makes the dystonia worse
12.50% say that hot baths and heating pads make the dystonia worse
6.45% say that hot baths or showers are uncomfortable
1.05% say that heat added to the dystonic muscle makes it worse
cold
it helps
15.63% say that a cold compress reduces the tightness
7.89% say that a cold compress helps
it has no effect
46.88% say that a cold compress does not reduce the tightness
1.58% say a cold compress has no effect
it makes the dystonia worse
1.05% say that a cold compress makes the dystonia worse
effect of exercise
it helps
60.00% say that exercise makes their body feel good
53.92% say that exercise brings relief
25.00% report that stretching the dystonic muscles over time is good for them
20.00% report that it helps to stretch the dystonic muscle
14.42% report that exercise helps reduce lumps, knots of rope-like muscles
it has no effect
33.65% report that exercise has no effect on lumps, knots of rope-like muscles
it makes the dystonia worse
60.00% report that weight workouts make them feel worse
40.00% report that exercise makes their body go into spasms briefly
37.50% report that stretching the dystonic muscles makes them hurt more
25.00% report that stretching the dystonic muscles is a bit painful
20.00% report that exercise makes their body stiffen or freeze up
effect of massage
it helps
71.33% report that massage brings relief
50.00% report that it helps if they rub the dystonic muscle
40.00% say that it helps if they push down a bit on the dystonic muscle
37.50% say that it helps to massage their muscles after exercise
35.48% report that it seems to help to gently lift and manipulate the muscle
30.53% report that to touch the dystonic muscle hurts but brings relief
25.00% report that the pain is less for a second if they apply gentle pressure elsewhere
9.68% report that it helps to massage the opposite muscle
it has no effect
75.00% report that the pain is not less briefly if they apply gentle pressure elsewhere
50.00% report that it does not help to rub the dystonic muscle
38.71% report that it does not seem to help to massage the opposite muscle
37.89% report that touching the dystonic muscle has no effect
22.58% say it does not seem to help to gently lift and manipulate the muscle
it makes the dystonia worse
15.79% report that touching the dystonic muscle hurts and is not helpful
effect of swimming
it helps
12.90% say swimming helps with the dystonia
it has no effect
9.68% say swimming does not affect the dystonia
it makes the dystonia worse
50.00% report that swimming is not pleasant or them because of dystonia
12.90% say that swimming is harder for them with dystonia
importance of pillows placement
it helps
87.50% have a special pillow strategy- memory foam, feather, double pillow
60.00% report that pillow arrangement is important to them
60.00% report that they really need the neck support of a pillow
25.00% say they like to have pillows or a soft brace touching the skin
it has no effect
51.61% say it does not help to have a soft pillow against their dystonic muscle
30.30% say their pillow needs have not changed since dystonia
effect of pressure of a heavy or weighted blanket
it helps
0% say a heavy or weighted blanket helps
it makes the dystonia worse
37.50% say a heavy or weighted blanket feels too constricting
effect of deep breathing
it helps
68.75% report that if they deep breathe they can had situational tension better
43.75% report that taking a deep breathe helps reduce a pain tension message
17.58% say that a few deep breaths relax them
it has no effect
56.25% report that a deep breath does reduce a pain tension message
40.11% report that deep breaths have no effect on the dystonia
31.25% report that a deep breath does not help them handle situational tension better
it makes the dystonia worse
7.69% report that a few deep breaths cause them gentle spasms, but relief
presence of nearby fan to circulate air
it helps
16.13% say having a fan circulating air near them help them relax
it has no effect
41.94% say it makes no difference to their ability to relax
it makes the dystonia worse
9.68% say it keeps them from being able to relax
presence of open window at night to get fresh air
it helps
36.67% say it usually helps to have a window open at night to get fresh air
it has no effect
43.33% say an open window makes no difference to them
it makes the dystonia worse
10.00% say fresh air can disrupt their comfort
presence of noise
it helps
38.71% report it is reassuring to listen to a person or pet sleeping near them
32.26% say they sleep better if there is a constant noise like a furnace or electric fan
25.00% say they seelp well with soft music, sound of waves or lulling voices on tape
12.50% report that it helps them sleep to listen to audio books
it has no effect
41.94% say it makes no difference to their sleep
29.03% say it makes no difference in terms of being reassuring to hear a pet sleeping
it makes the dystonia worse
75.00% say they sleep best with silence, no radio or TV or voices nearby
16.13% say furnace or fan noise interferes with their sleep
16.13% report that hearing a person or pet sleeping near them interferes with their sleep
effect of light when trying to sleep
it helps
it has no effect
it makes the dystonia worse
75.00% report they sleep well with lights off, dark curtains, tech devices turned off
20.00% report that a dark room relaxes them
effect of nearby vibration
it helps
12.97% report that nearby vibrations bring relief
12.50% sleep well with a vibration near them like on a train or airplane
effect of dancing
it helps
21.88% report that dancing seems to reduce the dystonia
it has no effect
43.75% report that dancing does not seem to reduce the dystonia
effect of wine and alcohol
it helps
32,35% report that wine seems to reduce the dystonia for a short time
20.00% report that wine temporarily reduces the dystonia
20.00% report that alcohol such as vodka briefly reduces the dystonia
5.88% say wine seems to reduce the dystonia for quite a while
it has no effect
14.71% report that wine has no effect on the dystonia
it makes the dystonia worse
40.00% report that alcohol causes them rebound tremors the next day
8.82% report that wine seems to make the dystonia worse
use of caffeine
it helps
8.82% have increased caffeine to combat drowsiness or other features of dystonia
it makes the dystonia worse
26.47% have reduced their use of caffeine because of tremors of other features of
dystonia
25.00% report they sleep better if they have not had caffeine recently
determination and silence
.Some studies of dystonia suggest that the condition seems to affect more those who are quiet, introverted and who conceal emotions in general. It is not clear if the dystonia is related to harboring of feelings over time to a point where the body became exhausted under the pressure, or if the quiet nature of patients is just coincidental. It is also possible that those who survive dystonia and do not give up, who still try to cope and research the condition, seek medical help and do surveys are by definition the ones who are resilient so there may be a sampling bias.
A few questions examines aspects of this independence.
65.22% said they stop and get help if raising a heavy load hurts
42.86% said they have problems doing household tasks but they still do them
42.86% said they get help from others to do some of the tasks
34.78% said they still try to do tasks alone
20.00% said they find it useful to hang onto someone’s arm now
7.69% said they really work hard at physical exercise, over an hour each day
3.85% said they push themselves to exercise even if there is intense pain
This tendency to not get help is consistent with other survey resulits which indicated a concern to not let others see the dystonia, and even to hide it found in the surveys on daily activities.
In one survey 25.00% of respondents said the covid mask helped them hide some of the oddity of their dystonic posture
Lived Experience With Dystonia 