Symptoms – Mobility- getting from one place to another
A. Context – background,
People with dystonia often have tried out aids to getting around – canes, walking sticks, walkers or wheelchairs. What aspect of dystonia technically is helped could be studied – fatigue, balance, gait. Patients report strong preferences for types of aides, and merits of no wheel, two wheel or four wheel walkers may also have implications for the nature of how dystonia changes balance.
Patients report not only problems walking or negotiating stores but sometimes effects on the use of bicycles, subways, cars, airplanes. In some cases the smooth ride suspension of vehicles seems a relief and some report that bicycling helps them still get around easily. Others however report they can no longer hold their head up or keep foots in pedals to ride a bike. Some find ways to cope with car driving while others have had to give up their license to drive.
B.. Comments from patient experience
My arms were so weak I needed an electric wheelchair
On bad days I could not drive the car and had to have someone drive me
For this fundraiser, he will simulate dystonia by pushing a wheelbarrow up hill
My fear of going up stairs is escalating
I had to give up my driver’s license
My new vehicle is a walker
The dystonia becomes most severe when I am driving
I can’t ride my bicycle any more
I could not drive
C. How to ask
Source of question ideas: – biographies, patient reports
D. Question categories
sitting
standing
walking
biking
bus train, plane
car
swimming
aids – walker, wheelchair – see also coping
E. – Questions asked
surveys 2A and 23
F. Results
symptoms
2A 217 symptoms 26 40 76 5
23 24 symptoms 18 24 81 3
max. no. respondents 217
total questions 64
likely type of dystonia – all
percent of all respondents doing survey 217 or 508 or 42.7%
G 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. sitting
-change of sitting posture
17.02% I can sit still and steady for quite a while
51.06% I frequently shift posture just to avoid pain
14.89% I frequently shift posture involuntarily and can’t fully control
the movements (3A- 19)
2.. walking
-Do you like to touch a fence or wall as you walk by, to steady yourself?
45.23% Yes., it is necessary or useful
32.66% No it is not necessary or useful (2A -14)
-When you walk have you sometimes bumped into a tree branch or pole?
13.93% Yed main from not seeing them due to neck twist position
39.30% Yes mainly due to imbalanced gait even if I did see them
22.89% No I have not bumped into things (2A – 15)
-Do you have balance problems going up and down curbs?
22.11% Yes often
30.65% Yes occasionally
35.18% No (2A -16)
3. bicycle
-Can you still ride a bike?
7.69% I really enjoy riding a bike despite dystonia
1.54% I can move better on a bike than walking
27.69% I can’t ride a bike easily because of my neck problems
12.31% I can’t ride a bike easily because I have trouble balancign
and sitting still on the bike seat
20.00% I have never ridden a bike much
10.77% Dystonia has not changed my bike riding habits (3B – 5)
4. car
-Do you find seatbelts or shoulder straps uncomfortable because of the dystonia?
17.46% Yes, they are slightly more uncomfortable than before dystonia
11.11% Yes they are a lot more uncomfortable than before dystonia
61.90% No, there is no change for me despite dystonia (3B – 8)
-Do you still drive?
36.92% Yes, my driving patterns have not changed
32.31% Yes, but I drive shorter distances or less often because of my
neck problems
12.31% yes but I have some challenges with my feet and the pedals
0% Yes and I have adapted my car to hand controls
9.23% No, I have quit driving
6.15% I never did drive (3B – 6)
-passenger experience
39.06% If the car has poor suspension or on bumpy roads the pain of my
dystonia is worse
17.19% I have trouble with involuntary movements and need to hold
onto a handle or some other part of the car
17.19% I am more comfortable in vehicles with good springs
and suspension such as modern buses
12.50% I am comfortable in an airplane seat
39.06% I have adjusted my travel in vehicles because of dystonia
28.13% I have not had to adjust my travel because of dystonia (3B – 7)
-in car as passenger or driver
33.33% The seatbelt strap is sometimes painful due to dystonia
66.67% It is hard to get a comfortable seat back or head rest position
0% It is hard for me to detach or unpeel my hand from door handles or controls
0% The gentle vibrations of the car on the highway reduce my spasms
66.67% A bumpy road makes the dystonia more painful
33.33% I have sudden jerky motions that make it hard to sit still
50.00% I prefer to be driven to appointments and errands
16.67% I worry at a police stop that my sudden jerky motions may startles the
officer
33.33% I have no physical discomfort when riding in a car (25-4)
(not many respondents answered this question)
5. bus, subway, train, airplane
-airplanes
0% In airplanes I feel a little dizzy now and off balance
0% In airplanes I feel very comfortable and the noise lulls me
12.50% In airplanes it is hard to sit still
14.06% In airplanes I really appreciate having a headrest
7.81% In airplanes it is a little trickier than before dystonia to walk down
the aisle or use a washroom
17.19% I still enjoy flying, despite dystonia
23.44% unsure
25.00 % not applicable (3B- 9)
(this may be a useful question but seems unclearly presented)
6. walker, wheelchair, aides
-Do you ever use a cane?
6.25% Yes, often
25.00% Yes, but only occasionally when the ground is uneven or slippery
68.75% No (13-29)
-use of cane
37.50% I sometimes use a cane or walking stick
25.00% If I use a cane, it helps if I bounce a bit
0% If I use a cane, it is worse if I bounce a bit
62.50% I do not use a cane or walker or wheelchair (25-1)
(not many people responded to this question)
-Have you ever used a walker to help with the dystonia?
6.45% Yes often
6.45% Yes occasionally
87.10% No (13-37)
-wheelchair
72.31% I do not use a wheelchair
4.62% I sometimes use a wheelchair
3.08% I nearly always use a wheelchair
3.08% I have two wheelchairs, one for at home and one for travel
3.08% Where I live has good wheelchair access for street curbs and
building entrances
3.08% Where I live has good wheelchair access for buses and subways
0% I had to modify where I live for wheelchair use
0% I have had to move to a new home because I need a wheelchair
23.08% not applicable (3B -11)
H. Analysis
Sitting
Sitting is itself a challenge for many with dystonia. 17.02% say they can sit still and steady for quite a while. 65.95% report they shift posture either to avoid pain or involuntarily. This suggests that dystonia is a problem even for people trying to be at rest and is not just a movement disorder.
walking
Walking appears to be a significant problem not just due to leg problems but even to problems seeing where a person is going due to neck problems.
Nearly half of those asked at 45.23% like to touch a fence or wall to steady themselves as they walk. 53.23% say they have sometimes bumped into objects when walking.
Curbs present a particular problem and this may be not just due to balance but possibly also to vision and seeing the curb. 52.76% report problems going up and down a curb. The survey on daily activities asks about going up and down stairs or hills which seems to present similar challenges.
bicycle
Though some patients report no change in bike riding habits (10.77% ) and some report that the bike is better than walking is now (1.54%) 40.00% report they can no longer ride a bike easily, either because of neck or balance problems.
cars
Cars present a number of challenges, including seat angle, head rest and shoulder straps 28.57% report that seatbelts are slightly or a lot more uncomfortable since they got dystonia.
36.92% of drivers say their driving patterns have not changed but 9.23% say they have quit driving and 44.62% have adjusted their driving due to dystonia
66.67% report that a bumpy road makes the dystonia more painful
50% report they now prefer to be driven to appointments and errands
These observations about bicycle and car use have significant impact on daily life and on a person’s sense of independence.
canes, walkers, wheelchairs
The questions in this set survey how seriously dystonia has changed mobility. However the questions in this set seem poorly framed since the respondents were those who did not use those aides. It would be useful to ask more detailed questions among those who do use them.
Lived Experience With Dystonia 