Leg, Foot
A Context
Dystonia of the foot can occur in children who develop this as an early symptom and then later are diagnosed with generalized dystonia that has spread to much of the body. Those diagnosed with dystonia of the foot often report that it tends to turn in or that when walking they are pigeon toed and can’t put their foot down flat, ending up standing on their ankles.
Those who experience sudden cramping of a toe are often in excruciating pain. Many with foot and leg dystonia report problems controlling their movement, with involuntary kicks and spasms making it difficult to sit still or safely. Some say they often have to pin themselves down or hold onto something to be still. They may inadvertently kick out and against an object and injure themselves and some have reported spasms in the night during sleep that were so severe that they broke a bone. Some report involuntary kicks when awake that have injured someone trying to massage them.
B. History
1300- Dante Alighieri writes an epic poem, The Divine Comedy, outlining a tour of Purgatoria and Paradiso. In scenes of the Inferno, some of the tortuous figures depicted suggest dystonia
1912 – Fraenkel looks at rapid twisting sustained movement and twisted posture in the pelvis
1917 – Egon Schiele (1890- 1918 ) was a Paris photographer who took some photos of people with dystonia-like postures
1969-a motion picture “Gait and Musculoskeletal disorders” is made by Wayne State University
1973 Neurosurgeon I. S. Cooper writes “The Victim is Always the Same” describing his work with children with dystonia musculorum.
2002 – Carmine L. Petrangelo writes ” Surviving Dystonia; the truth about this rare and misunderstood disease” He chronicles his experiences with dystonia musculorum deformans, generalized early onset dystonia from a young age.
2002 – Bette Levine writes “Learning, Coping, Living’ about her experiences with cervical dystonia and blepharospasm and generalized dystonia and her resilience.
2013 – Brenda Currey Lewis writes ” A Twisted Fate: my life with dystonia”
C. What seems useful to study further
1. the way dystonia affects the leg of foot or toes
Some people report turning, cramping, involuntary jerking. This seems much more common than for those with neck dystonia and the difference may merit study.
2. the progression of the condition
Dystonia that appears in the foot often in children later moves up the body to other body parts. The progression up is in contrast to the dystonia progression from some who first get dystonia of the face or neck and have it progress downward. It may be useful to study what some types appear in one body part and not another, and why they move the way they do.
There may be several hypotheses about the logic of the spread
-the damage is in the muscles affected and spreads to muscles that are physically beside them
-the damage is in the brain that instructs the muscles and that damage spreads in the brain
-the damage is in the brain area that receives messages back from the muscles and that error spreads in the brain
Since adjacent body parts are often affected that confirms the first hypothesis but that is not always the pattern.
Brain mapping by Dr. Penfield of motor areas of the brain showed adjacent areas and it would be interesting to see if dystonia tends to also spread in that order.
lips
face
eyelid/eyeball
brow
neck
thumb
index finger
middle finger
ring finger
little finger
hand
wrist
elbow
shoulder
trunk
hip
knee
ankle
toes
The map of the brain for sensory homonculus however shows a different set of areas adjacent to each other when messages are sent back to the brain.
genitals
lower extremities
neck
shoulder
torso
upper extremities
hand face
face
It would be interesting, if there patterns of progression of dystonia, to see if either of those three patterns is followed.
-if the motor areas are not affected in order, by adjacent areas of the brain, this may suggest that dystonia is not an injury spreading within areas of the brain
-if the sensory areas are not affected in that order, that may suggest that damaged sensory input received from the body is not spreading in the brain.
However the reality may be more complicated. It may be a blend of dysfunction both in sensation and in motor response. It may even be an overriding cognitive error of higher level directive that is simply sent through the motor system, as if a survival instinct that a person has to do this thing, as intensely as the need to breathe.
The pattern of dysronia’s spread up the body or down, or from the core to the extremities or from the extremities to the core may also be useful to study. A separate examination of the orientations of dystonia – left right, up down, open closed, bent straight is done in a later chapter.
3. ways to cope, devices used, treatments used
This is a particularly devastating diagnosis if gait and ability to sit are affected and if the dystonia then moves up to other body parts also Not only are the dystonic postures and movements very visibly unusual but patients have often had to make accommodations of walkers, wheelchairs and splints. Most have had a lot of treatments over the years, both medical and surgical. Those who have had dystonia for most of their live and are not seniors have great wisdom to share about the condition. The survey try to access some of that.
D. Comments from patient experience
first signs
A friend noticed that my shoes were now wearing down at the back of the heels
When scuba diving I’d start to kick my own fins, which was annoying
It started with a strange feeling in one foot, as if someone was pulling it
I had begun to walk on the outside edge of my foot
toes
It started with tripping over the toes because they turned in so bad
My toes were curling and bending backward for no reason
foot
My foot bends so oddly people think it is broken
ankle
My ankles twisted
knee
My knee gave way and I fell while carrying my daughter. She was unhurt.
My knee would give way, out of the blue and it got stiffer. I’d drag the other leg
leg
The dystonias went up my leg, twisting it inward and pulling it behind me
pain
It felt like my foot had a car parked on it
My leg felt like one big muscle cramp
spasms. tremor, shaking
My inner thighs and shins cause my cramps and spasms, even at night
I had a spasm so bad once I broke a toe
My legs turned inward and tremored
My foot would turn in and my leg would go into spasms
My legs were shaking so much that I fell down dancing at a wedding reception
involuntary movement
My leg would fling up out of the blue
actions not possible
I could not control my leg muscles well. It was hard to crouch
I no longer could skip and I used to love to skip and pirouette
sitting
My leg started to pull up towards my chest when I sat down
standing
I have always bent my one leg when I stand
When I stood my leg twisted behind me
walking
Her left foot dropped faster than her right and she was tripping often
I was now often limping
I was walking on the tips of my toes
daily life impact
I was going through a lot of shoes,
It was hard to get out of the bathttub
My shoe soles wore out fast
coping
I was trying to compensate for one leg being stiff by dragging the other one
I take a size eleven shoe but wore size 13 to give my foot room to curve. I tripped.
treatment
On the right dose I am now able to dance again
E. Source of question ideas
patient reports, clinical studies
F. Question categories
leg
foot
toes
balance
movement technical
mobility- bike car,
sens tricks
G. Questions asked -survey number, question number
surveys 12A, 32
H. Results
leg foot, toes
12A 17 leg,foot 20 60 81 6
32 3 leg foot 16 16 83 2
max no. respondents 17
total questions 76
likely type of dystonia leg, foot, toes, generalized, possibly others
percent of all respondents doing survey 17 of 508 or 3.3%
challenges to doing this survey- sitting erect and still
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 symptoms and appearance-
-In resting position do any toes stick oddly straight up?
35.29% Yes
64.71% No (12A- 6)
-Are your toes always pointed oddly?
47.06% Yes
52.94% No ( 12A – 2)
-In resting position does one of your feet curl downwards?
35.29% Yes
64.71% No (12A- 5)
-Does your foot arch oddly?
58.82% Yes
41.18% No ( 12A-3)
-These questions ask about your feet.
66.67% My foot curls in
33.33% My feet twist at night
0% I get a charley horse in the arches of my foot
33.33% My foot sometimes cramps
0% Both feet are turned inward. I am pigeon- toed
100.00% I have spasms in my feet
0% I have inverted ankles
0% My foot spasms have been so bad that a bone broke
0% My foot has cramped so badly that a bone broke (32-3)
(low number of respondents to this question)
-These questions ask about your toes.
0% At rest, some toes spread out or separate oddly from the others
66.67% Some of my toes are curling
0% Some of my toes stick straight up
33.33% I sometimes get a charley horse or cramp in my toes
33.33% My toes sometimes move involuntarily as if they are dancing (32-4)
(low number of respondents to this quesetion)
2. symptom progression
-If your dystonia progressed, what was the pattern?
17.65% It started in one foot and moved to higher up the leg
11.76% It started in one foot or leg and moved to the other foot or leg
23.53% It started in the foot and moved up to the trunk
17.65% It started in the foot and moved up to the neck eventually
23.53% It started in the neck and moved down to the leg and foot
5.88% It was ever only in one place and did not move
11.76% unsure
5.88% not applicable ( 12A -52)
-Did your leg dystonia progress upward to the torso, arms and head?
23.53% Yes, that was the pattern
29.41% That was only partly accurate for me
47.06% No that was not the pattern ( 12A -53)
3. pain, pressure cramp
-Is the dystonia pressure on your foot so strong it can break a metal brace or footrest?
11.76% Yes
52.94% No
35.29% not applicable (12A-22)
-Does your foot cramp as you walk?>
23.53% Yes most of the time
52.94% Yes but only sometimes
23.53% No (12A- 26)
-Do any of your toes suddenly cramp?
58.82% Yes, often
29.41% Yes but not often
11.76% No (12A- 25)
-Does your leg cramp as you walk?
41.18% Yes, much of the time
41.18% Yes, but only rarely
17.65% No ( 12A- 27)
-These questions ask about the legs
0% My legs move involuntarily sometimes as I sit
33.33% My legs sometimes feel like cement
0% My legs muscles have pulled so much that they have bruised
100.00% I sometimes get a charley horse in my calves
66.67% My calves sometimes twitch when I am at rest
33.33% The muscles between my thigh and knee are inflexible
0% My hips are inflexible (32-2)
(low number of responses to this question)
4. sensitivity to touch
-Does it hurt to touch your upper leg?
5.88% Yes nearly always
29.41% Yes sometimes
64.71% No (12A – 13)
-These questions ask about your sensitivity to touch
33.33% My dystonia is not affected by garments touching the area
0% My dystonia is worse if something is pressing against my leg
33.33% My dsytonia is worse if I have stiff shoes or new shoes
0% My dystonia is worse if I wear anything tight in the thigh area
0% My dystonia is worse if I sit in a soft cushioned chair
0% M dystonia is worse if I wear thick socks
33.33% not applicable ( 32-10)
(low number of respondents to this question)
5. balance
-To balance when walking do you keep your legs wider apart than you used to?
23.53% Yes I have a wider position now
35.29% No, it’s about the same as before
35.29% unsure
5.88% not applicable (12A -45)
-Is it hard to balance on stairs?
41.18% It is hard to balance going up stairs
52.94% It is hard to balance going down stairs
17.65% I often fall going up stairs
11.76% I often fall going down stairs
41.18% I sometimes crawl to go up stairs
23.53% I sometimes sit and bump along to go downstairs
88.24% I depend on hand rails to use the stairs
17.65% I avoid using stairs at all (12A-50)
-These questions ask about balance.
33.33% I can easily stand without hanging on to or leaning on a support
0% As I walk I have a rocking motion as I try to balance
0% I walk with my feet wide apart to help me balance
66.67% It is sometimes hard for me to walk in a straight line
33.33% I prefer to touch a wall or railing to help me balance
66.67% When I walk I sometimes have to step backwards or sideways
to keep my balance
0% Friends sometimes have tried to catch me to help me balance as I walk
(32-5)
(low number of respondents to this question)
6. sit, stand, walk
-Can you stand with both feet flat on the floor?
41.18% Yes
58.82% Not easily (12A- 18)
-Can you stand still, without leg movement?
35.29% Yes
64.71% Not easily (12A – 17)
-Is it hard for you to make your heel touch the ground?
17.65% Yes
82.35% No (12A- 1)
-Can you walk well for a while and then one foot starts to resist?
29.41% Yes that is the pattern, first no problem then a problem
17.65% No, there is no resistance at any point
29.41% No, there is always some resistance
17.65% unsure
5.88% not applicable ( 12A – 49)
-Is it hard to walk alone in a straight line several blocks of through a mall?
82.35% Yes
17.65% No (12A- 40)
-When you walk does the weight go down on the outside of the foot?
58.82% Yes most of the time
29.41% Yes but only some of the time
11.76% No (12A- 36)
-When you walk does your forearm move oddly and your wrist bend?
0% Yes much of the time
11.76% Yes but only some of the time
88.24% No (12A- 35)
-Does it feel like you are walking on your toes?
11.76% Yes
88.24% No (12A – 31)
-Walking, do you take many tiny steps?
6.25% Yes
93.75% No. I take the normal amount of steps (12A- 41)
-Is it hard for you when walking, to put one foot down, then the other?
35.29% Yes
64.71% No (12A- 43)
7. speed- gait
-Does it take you longer than others your age to walk a given distance?
62.50% Yes
37.50% No (12A- 42)
-Walking, do you lift each foot off the ground about the same way on both sides?
56.25% Yes
43.75% No ( 12A – 44)
-When you start to walk does a foot that is normally straight turn inward?
50.00% Yes
50.00% No ( 12A- 34)
-Do you when walking cover less distance with either foot?
0% Yes, there is less distance from my first left step to my next left step
11.76% Yes there is less distance between my first right step and my next
right step
35.29% My stride length seems the same as it was, on both sides
47.06% unsure
5.88% not applicable (12A – 46)
8. range of motion
-Do you have problems straightening your leg at the knee?
29.41% Yes
70.59% No ( 12A-12)
-Can you tap toes of either foot on the ground?
88.24% Yes
11.76% No (12A- 8)
-Can you tap each heel on the ground?
76.47% Yes
23.53% No (12A-7)
9. control of motion – rhythm, delay, freeze, lock
-Does your gait freeze for a split second?
23.53% Yes much of the time
47.06% Yes but only rarely
29.41% No ( 12A- 47)
-Does one side of your respond more slowly than the other as you try to walk?
17.65% Yes one side seems slower most of the time
23.53% Yes one side seems slower some of the time
23.53% Both sides respond more slowly than they used to
17.65% Both sides respond at the same speed as always
11.76% unsure
5.88% not applicable (12A- 48)
-Do your knees lock as you walk?
5.88% Yes, much of the time
17.65% Yes but only rarely
76.47% No (12A-32)
-Does your foot drag as you walk?
17.65% Yes nearly always
52.94% Yes but only sometimes
29.41% No (12A – 28)
-Walking, does one foot turn backwards or sort of upside down?
5.88% Yes
94.12% No (12A-38)
-Does one leg buckle when you walk?
5.88% Yes much of the time
35.29% Yes but only rarely
58.82% No (12A-29)
-Does your heel pull up as you walk?
35.29% Yes
64.71% No (12A-33)
-These questions ask about rhythm of motion and delay.
66.67% As I walk, I can stop and start easily
33.33% After I walk a few steps, I stiffen up
0% There is a delay from my trying to move a foot to it moving
33.33% As I walk I have involuntary pauses, a freezing gait
0% My legs go into spasms as I walk
0% As I walk m legs sometimes give out
0% I can walk smoothly without involuntary pauses (32-8)
(low number of respondents to this question)
-These questions ask about control of motion
33.33% I walk on the sides of my feet
0% My feet shoot out unpredictably when I walk
0% When I walk my legs tend to cut each other off
33.33% When I walk one foot points at the other foot
33.33% When I walk sometimes my leg buckles
33.33% not applicable (32-7)
(low number of respondents to this question)
-These questions ask about ease of motion
33.33% I can easily raise and lower my left foot when I walk
0% I can easily raise and lower my right foot when I walk
0% I can easily glide or walk forward smoothly
0% It is hard for me to make my heel touch the ground as I walk
33.33% I sometimes stagger
33.33% My legs sometimes lock as I try to move
66.67% It is hard for me to dance
33.33% It is hard for me to stomp my feet rhythmically (32-6)
(low number of respondents to this question)
10. still or when moving
-Is your dystonia gone when you are sitting and it only happens when you walk?
5.88% Yes that is the pattern for me
76.47% No, that is not the pattern for me
0% unsure
17.65% not applicable (12A- 57)
11. curl, twist, bend
-When you sit do your toes curl?
29.41% Yes
70.59% No (12A-14)
-When walking do your nondystonic toes start to curl?
29.41% Yes
70.59% No (12A- 37)
-When you sit down does your leg draw up towards your chest?
18.75% Yes
81.25% No (12A-16)\
-Does one leg cross behind the other as you walk?
5.88% Yes much of the time
0% Yes but only rarely
94.12% No (12A- 30)
-Does either foot turn inward or clench?
58.82% Yes
41.18% No (12A-4)
12. voluntary or involuntary
-When sitting at a desk do your random arm motions wear out elbows of your shirt?
5.88% Yes
94.12% No (12A- 15)
13. tremor, spasm, twitch
-When you walk do you feel a tremor?
35.29% Yes
64.71% No (12A- 39)
-Does your leg twitch?
47.06% Yes a lot of the time
35.29% Yes but not often
17.65% No (12A- 23)
-Does either knee twitch?
23.53% Yes often
17.65% Yes but not often
58.82% No (12A-24)
14. daily activities
-Can you walk more easily in an empty hallway than with people near you?
23.53% Yes I prefer to be a way apart from people to not bump into them
41.18% I prefer to be near a wall I can touch for balance as I pass
11.76% I like to be near someone I can hang onto for balance
0% I like to be between people walking with me on either side for balance
29.41% In narrow areas if I am with people I prefer they go ahead of me
not me ahead of them, so I don’t bump them or worry them with my gait
41.18% I am not affected by the presence of people as I walk
5.88% unsure
5.88% not applicable (12A- 58)
-Are there situations where it is harder for you to walk?
41.18% It is harder if I am in a hurry
35.29%It is harder if I am under emotional stress
17.65% It is harder if I see someone coming towards me and am concerned
about not bumping into them
11.76% It is harder if I feel like someone is watching me
35.29% My walking ability is the same in the above situations as normal
11.76% unsure
11.76% not applicable (12A-51)
-Do you have trouble keeping your heel in a shoe?
18.75% Yes
81.25% No (12A- 9)
-When trying to put on shoes does the foot resist and clamp up like a fist?
41.18% Yes
58.82% No (12A-10)
-These questions ask about daily actvities
0% I have trouble reaching down to wash my legs and feet
0% I have trouble putting on socks
0% I have trouble putting on shoes
100% I have trouble clipping my toenails
33.33% My odd toe positions make it hard to find shoes that fit comfortably
33.33% I have trouble shaving my legs (32-9)
(low number of respondents to this question)
15. bike, car
-Is bike riding difficult because your foot slips off the pedal?
17.65% Yes
29.41% No
52.94% not applicable (12A – 20)
-Is bike riding easier for your body than walking?
18.75% Yes
81.25% No (12A- 19)
These questions ask about bicycling
0% Biking is a much better way for me to get around than walking is
0% I have adjusted my bike seat due to dystonia
0% It is hard for me to keep my foot on the pedal
0% I have changed the type of pedal I use to help with dystonia
0% When biking the pedal bumps my leg
0% I have tried a recumbent bike
0% I have tried an adult tricycle
0% I am no longer able to bike
100% not applicable (32-14)
(low number of respondents to this question)
-Driving a car, do you have trouble using your foot on the pedals?
33.33% Yes
66.67% No (12A-21)
16. describing
-These questions ask about how you describe your dystonia.
33.33% My legs feel heavy
0% My legs feel stiff and robotic like they are made of tin
33.33% It feels like my quads are fighting each other
0% I say my feet have a mind of their own
0% I say a few toes have a mind of their own
66.67% not applicable (32-11)
(lower number of responses to this question)
17. sensory tricks
-Does the dystonia seem less when you walk backwards?
17.65% Yes often
5.88% Yes sometimes
23.53% No
47.06% unsure
5.88% not applicable (12A-54)
-Is walking easier if you put your left hand on your left knee and your right hand on your right knee?
0% Yes
100.00% No (12A-56)
-Though it is hard for you to walk can you run with smooth unhindered stride?
5.88% Yes sometimes
0% Yes often
58.82% No
35.29% not applicable (12A-55)
-These questions ask about situations where the dystonia seems surprisingly less
33.33% The dystonia is less if I walk backwards
0% The dystonia is less if I shovel snow or take the lawn moving backwards
0% It is easier for me to run than to walk
0% The dystonia is less if I bounce as I walk
0% The dystonia is less if I dance as I walk
0% The dystonia is less if I hold my hands out to my sides
0% The dystonia is less if I hold my hands over my head
66.67% not applicable (32-15)
(low number of respondents to this question)
-These questions ask about situations where the dystonia seems surprisingly less
0% The dystonia is less if I push one hand against my side
0% The dystonia is less if I go around a course counterclockwise
0% The dystonia is less if I walk on rocks and uneven surfaces
0% The dystonia is less if I walk on beach sand
0% The dystonia is less if I walk uphill
0% The dystonia is less if I walk downhill
100% not applicable (32-16)
(low number of respondents to this question)
17. coping, exercise
-Are there exercises you do that help with leg stiffness?
18.75% It helps to rub the upper leg, even with a rolling pin
31.25% It helps to push with my hand on the stiff part of the leg
50.00% It helps when sitting to rest the stiff leg on a footrest or coffee table
0% It hurts when sitting to rest the leg on a foot rest or coffee table
31.25% No particular exercise helps with leg dystonia
6.25% unsure
18.75% not applicable ( 12A-59)
-These questions ask about ways you try to cope with dystonia
0% I have tried compression socks
0% Compression socks help me
66.67% I have tried heat to reduce spasms or twitching
33.33% I have tried massage to reduce spasms or twitching
0% If spasms are bad at night, I sometimes get up and put weight
down on my feet
33.33% I have changed my sleeping position to try to lessen the dystonia
symptoms
33.33% Heat sometimes helps reduce the dystonia
0% Massage sometimes helps reduce the dystonia
66.67% Changing body positions sometimes reduces the dystonia (32-12)
(low number of respondents to this question)
18. treatment and devices
-These questions ask about devices tried
100.00% I use a cane sometimes
33.33% I use a walker sometimes
0% A leg brace helps me
0% With leg braces, I have problems at the back of my knee
0% I sometimes use a chair on casters to get around more easily
0% I sometimes use a wheelchair
0% I do not use any devices or mobility aids (32-13)
(low number of respondents for this question)
-Have you had surgery on your foot or leg?
12.50% I have had Achilles tendon surgery
0% I have had hip adductor surgery
12.50% I have had other surgery on my foot or leg
75.00% I have never had surgery on my feet or legs for dystonia
0% unsure
6.25% not applicable ( 12A-60)
-If you use a wheelchair do you have trouble keeping either foot on the footrest?
23.53% Yes
11.76% No
64.71% not applicable (12A- 11)
J. Analysis
sampling
The low number of respondents for some of the questions may make the survey results statistically not fully accurate for the population of those with dystonia of the leg or foot. However for those who did respond, patterns may still be evident
moving or at rest
Some forms of dystonia seem to only present themselves when the person starts to move. However some patients report that the dystonia happens even when the person is at rest. In this survey 5.88% reported that the dystonia is gone when they are sitting and only happens when they walk. However many more reported dystonia even when they are at rest.
at rest
35.29% said in resting position some of their toes stick oddly straight up
35.29% said in resting position one of their feet curls downwards
47.06% said their toes always point oddly
moving
85.36% report that much or some of the time their leg cramps as they walk
76.47% report much or some of the time their foot cramps when they walk
curling versus sticking straight out
As with dystonia in the fingers, respondents vary in terms of whether the dystonic position is one where muscles curl or where they stick out oddly straight.
curling
66.67% said their foot curls in
66.67% said some of their toes are curling
58.82% said their foot arches oddly
58.82% report that a foot turns inward or clenches
35.29% said their feet curl downwards
33.33% said their feet twist at night
29.41% report that when they sit their toes curl
18.75% report that when they sit down a leg draws up towards the chest
sticking straight up or straight out
47.06% said their toes always point oddly
35.29% said in resting position their toes stick oddly straight up
The greater number of those whose dystonia involves curling compared to those whose dystonia involves sticking straight up is a pattern consistent with what has been reported in the survey on hand and fingers. An examination of the orientations of dystonia – left right, up down, bent curled, open closed is made at a later chapter.
voluntary versus involuntary
Dystonia is defined in many studies as an involuntary movement disorder.. However some repondents report that they feel a pressure to hold a certain position so it is not so much a movement disorder as a disorder of position. Some report that the movements they make seem a combination of the dystonic pressure with their voluntary response to it. Whether the patient has control over the movements seems a complex question. In this survey the curling or sticking straight up positions are reported as static and involuntary. However movement is not always reported as involuntary.
involuntary
88.23% report that some of their toes suddenly cramp either often or occasionally
33.33% reported their toes sometimes move involuntarily as if they are dancing
One aspect of dystonia that may be of interest is how other body parts engage in trying to deal with the dystonia. Some motions of adjacent toes for those with foot dystonia or of arms when a person has leg dystonia seem to happen involuntarily, not directed by conscious decision. These however may be an attempt by the brain to assist in getting a motion achieved or in restoring balance.
29.41% report that when walking their nondystonic toes start to curl
11.76% report that when they walk their forearm moves oddly and the wrist
bends some or much or the time
5.88% report that sitting at a desk their random arm motions wear out shirt elbows
pain
Respondents reported varied levels of pain.
cramps
100.00% report they sometimes get a charley horse in the calves
88.23% report some of their toes suddenly cramp often or occasionally
85.36% report their leg cramps much or some of the time
76.47% report their foot cramps as they walk most or some of the time
33.33% report their foot sometimes cramps
pressure
11.76% report the dystonia pressure on their foot is so strong it can break a metal brace or footrest
heaviness
33.33% report their legs sometimes feel like cement
33.33% report that their legs feel heavy
sensitivity to touch
Patients anecdotally report two types of pain- the kind that presents on its own and the kind that is noticed when a person touches that area of the body. These seem to occur in the same location in some but not all cases. A person running a hand down the leg may notice suddenly an area of intense pain with relief even like a discovery of where the problem is coming from. Not all respondents however report the same experience. Some anecdotally are sensitive to even mild touch in the area and others much less so.
35.32% report that it hurts nearly always or sometimes to touch the upper leg
33.33% report that their dystonia is not affected by garments touching the area
The phenomenon of touch and dystonia may be useful to study. For some touch aggravates the dystonia particularly it with leg dystonia, but for others touch relieves the dystonia, particularly for cervical dystonia and the classic sensory trick.
Aspects of difference seem to be:
-whether the touch causes comfort or discomfort
-whether the area produces pain when not being touched or only when touched
-the pressure of the touch required to produce the effect. With sensory tricks the pressure is usually very little but with pain, the pressure required from the hand seems much larger in order to diagnose pain
-the level of relief of the touch. Patients anecdotally report that with a sensory trick pain disappears. When touch reveals where the pain is however, patients report sometimes a relief as if discovering its location is a diagnosis and as if touching in some ways is a useful massage.
These phenomena seem quite different and the mechanics of them may be useful to study.
spasms, twitches, tremors
100.00% report they have spasms in the feet
82.35% report their leg twitches sometimes or a lot
66.67% report their calves sometimes twitch when they are at rest
41.18% report that their knee twitches sometimes or often
35.29% report that they feel a tremor when they walk
symptom progression
The survey revealed differences in the pattern of progression of symptoms
no change from initial presentation
5.88% reported that the dystonia was only ever in one place and did not move
dystonia moved up
23.53% reported that the leg dystonia progressed upward to the torso, arms and head
23.53% reported that it started in the foot and moved up to the trunk
17.65% reported that it started in the foot and moved up to the neck eventually
17.65% reported that it started in one foot and moved to higher up the leg
dystonia moved down
23.53% reported that it started in the neck and moved down to the leg and foot
dystonia moved to the other side of the body
11.76% reported that it started in one foot or leg and moved to the other foot or leg
movement
Dystonia seems to prevent smooth easy function of the legs and feet. However the nature of the problem seems to differ.
standing still
58.82% report they cannot easily stand with both feet flat on the floor
64.71% report they can not easily stand still without leg movement
delay, freezing as one tries to walk
70.59% report their gait freezes for a split second some or much of the time
70.59% report that their foot drags as they walk sometimes or nearly always
41.18% report that one side seems slower as they walk, some or most of the time
33.33% report that as they walk they have involuntary pauses, a freezing gait
33.33% report that after they walk a few steps they stiffen up
33.33% – 41.17% report that one leg buckles when they walk some or much of the time
23.53% report that the knees lock as they walk some or much of the time
23.53% report that as they try to walk both sides respond more slowly than before
other movement as one tries to walk
50.00% report that when they start to walk a foot that is normally straight turns inward
5.88% report that walking, one foot turns backwards or sort of upside down
5.88% report that one leg crosses behind the other as they walk
35.19% report that their heel pulls up as they walk
33.33% report that as they walk one foot points at the other foot
weight distribution
88.23% report that when they walk the weight goes down on the outside of
the foot some or most of the time
33.33% report they walk on the sides of their feet
17.65% report it is hard to make the heel touch the ground
11.76% report that it feels like they are walking on their toes
pace, speed of walking
62.50% report that it takes them longer than others their age to walk a given distance
gait
43.75% report that they do not lift each foot off the ground the same way
on both sides
35.29% report that it is hard when walking to put one foot down then the other
stride – length of steps
35.29% report that their stride length is the same as it was on both sides
11.76% report that there is less distance between their first right
step and their next right step
6.25% report that they take many tiny steps
problems going up stairs
41.18% report it is hard to balance going up stairs
41.18% report they often crawl to go up stairs
17.65% report they often fall going up stairs
problems going down stairs
88.24% depend on hand rails to use the stairs
52.94% report it is hard to balance going downstairs
23.53% report they sometimes sit and bump along to go downstairs
17.65% avoid using stairs at all
11.76% report they often fall going down stairs
The difference between going up and going down maybe useful to study. It appears that going down is more challenging which seems surprising since gravity would one might assume make it easier to do. However gravity also makes it easier to fall since the push is already downwards. Mountain climbers often report that descending the mountain is more dangerous than ascending though there may be other factors there such as fatigue or weather change. The mechanics of going up versus going down however are likely different and dystonia may be differently engaged in the two functions.
The difference may be as marked as between walking and running.
5.88% report that it is hard to walk but they can run with smooth unhindered stride
The difference may be similar to that between walking forwards versus walking backwards.
23.53% – 33.33% report that their dystonia is less if they walk backwards
control of motion
33.33% report that the muscles between the thigh and knee are inflexible
29.41% report they have problems straightening the leg at the knee
rhythm
The requirement to perform a motion with a steady rhythm as in walking is even more pronounced with dancing. The relationship between dystonia, rhythm, music and dance may be useful to study. Delay in response to a command to move may make dancing particularly difficult since it would be a long series of delays for each desired motion.
This same phenomenon of delays may also be at work when someone is asked to clap hands or tap toes.
66.67% report that it is hard to dance
33.33% report that it is hard to stomp their feet rhythmically
23.53% cannot tap each heel on the ground
11.76% cannot tap toes of either foot on the ground
However this same relationship with music is not reported by those with cervical dystonia who sometimes by contrast report that dancing reduces the dystonia or that alternate shoulder shrugs rhythmically done reduce it.
The two experiences of dystonia seem different, possibly because with leg dystonia the problem actually is with the legs, whereas with cervical dystonia the legs are not the problem – hence difference in dancing. A separate examination of music, rhythm and dystonia is done at a later chapter.
balance
The experience of balance seems different between the cervical and leg dystonia. Those with cervical dystonia often report that they adopt a wider stance in order to balance as they walk. Many of those with leg and foot dystonia however do not.
23.53% report they keep their legs wider apart when they walk now, for balance
This suggests that with cervical dystonia being able to see where you are going is the problem and seems to seriously affect balance . However with leg dystonia seeing where they are going is not the problem and getting the legs to get there is. Those with either type of dystonia seem to prefer to have handrails nearby but for quite different reasons. In this survey on leg dystonia
88.24% depend on hand rails to use the stairs
41.18% prefer to be near a wall they can touch for balance as they pass
11.76% like to be near someone they can hang onto for balance
devices,canes
Those with cervical dystonia may use a cane to help them balance and stay in line with where they are headed. Those with leg dystonia seem to use a cane more often to help them with the legs.
The survey on leg and foot dystonia found that
100.00% use a cane sometimes
33.33% use a walker sometimes
23.53% say that when they use a wheelchair they have trouble keeping a foot on the footrest
bicycling
Those who have cervical dystonia often cannot see where they are going, so they often can no longer bike. Those with leg dystonia however have no trouble seeing where they are going have other challenges. However some find bike riding particularly pleasant.
18.75% report that bike riding is easier for their body than walking
17.65% report that bike riding is difficult because the foot slips of the pedal
Lived Experience With Dystonia 