There is no official designation of dystonia or the shoulder or arm. However from the point of view of the patient, the involvemnt of those may be slightly different from the perceived involvement of neck or hand. It seemed useful to have this category for those who experience discomfort in those areas, tilted shoulder, pain down the arm, and for those whose ability to raise, lower, swing the arms is impacted by dystonia.
Those who golf, play darts, have to lift objects routinely, those who play baseball or other sports with significant arm movement may notice deficits, pain and delays in the motion they intend. Painters, musicians, bricklayers who need to use precise arm movements not just precise finger movements may find this survey useful.
B. What seems useful to study further
When dystonia makes one shoulder higher than the other, or the person unconsciously adopts such a posture to reduce pain, the tilt itself may create balance issues and have effect on gait. Patients may not be consciously adjusting gait but at a more reflex or learned levelconstantly adjusting it to accommodate the shoulder tilt.
When arm movements are not precise any more, daily function can be impacted. Ability to carry packages, to use vacuum cleaners, brooms or rakes may be affected. Some patients report concern that a shoulder seems to be moving out of its socket.
When the shoulder and arm are affected, golf swing, cricket swing, baseball swing can become so difficult that players have to change their stance, their strategy, their position on the team, or even sometimes end their careers.
Some with dystonia report that dystonia seems to carry an electric impulse or pain radiating down the arm. A separate examination of the orientations of dystonia, down or up, left or rigtht, stretched or curled is done at a later chapter.
Studying precise movements or positions that are now difficult may shed light on what muscles and brain areas are involved. Such precise observation may not be possible in a clinical setting particularly if the dystonia effect only happens when holding a golf club, or when making certain shots, or when holding the violin a certain way. The surveys attempt to capture such details of daily life that are not as easy to demonstrate in clinic.
C. Comments from patient experience
My shoulders were crooked when I stood
My shoulder started to pull up
D. How to ask
Source of question ideas:
patient reports and clinical studies
E. – Questions asked
surveys 10, 31
shoulder, arm ,hand, fingers
10 21 shoulder,arm 8 18 85 3
11A 28 hand,fingers 22 33 78 5
11B 15 hand,fingers 8 13 83 2
31 3 shoul hand 12 15 84 2
max no. respondents 21-28
total questions 79
likely type of dystonia shoulder, arm, hand, finger, possibly others
percent of all respondents doing survey 28 or 580 or 4.8%
challenges to do this survey – use of hand, fingers to tap keys and mouse
(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. first symptoms
-These questions ask about your first symptoms of dystonia in the arm or shoulder.
33.33% The dystonia started with pain in the shoulder
11.11% The dystonia started with involuntary twisting of the shoulder
11.11% The dystonia started with involuntary twisting of the arm
33.33%The dystonia started with involuntary twisting of the hand
33.33% not applicable ( 10-14)
-Is one shoulder higher than the other when you stand?
66.67% Yes usually
14.29% Yes sometimes
19.05% No ( 10-2)
-Does one shoulder go higher than the other when you walk?
57.14% Yes often
28.57% Yes sometimes
14.29% No ( 10-3)
3. symptom progression
5.88% My dystonia is in one place and has not spread or moved
17.65% My dystonia started in the wrist and went up the arm
5.88% My dystonia started in the arm and went down to the wrist
58.82% not applicable ( 10-13)
4. range of motion
-Can you rotate your shoulders in small circles, equally?
30.00% no ( 10-6)
-Can you bend both arms?
84.21% Yes their bending is as normal
15.79% Yes but one side bends differently from the other
0% No (10-7)
-Can you hunch your shoulders equally?
25.00% No ( 10-5)
5.56% I have no shoulder pain
55.56% I have pain in my arm
61.11% My pain radiates from the shoulder down the arm
0% I have no pain (10-9)
6. spasm, tremor, clicks
-Does your dystonia shoulder make more clicking noises than the other shoulder?
52.94% No (10-4)
7. involuntary or voluntary
-These questions ask about involuntary arm movement.
30.00% Sometimes one arm will rise up on its own
30.00% Sometimes an arm will flail out on its own
10.00% My arms often move uncontrollably
55.00% I am always in control of my arm movements
5.00% unsure ( 10-8)
-Does one shoulder turn in without you wanting it to?
57.14% Yes often
14.29% Yes sometimes
28.57% No (10-1)
8. daily activities
-These questions ask about effect of dystonia on daily life
44.44% I have trouble pouring liquids
33.33% I have trouble bringing a cup to my lips
16.67% I have trouble reaching for taps or door or cupboard handles
0% I have trouble reaching for switches
5.56% I have trouble reaching for bank machine or Interact machine operation
27.78% I have more trouble dressing myself because of the dystonia
38.89% I have more trouble bathing or showering because of the dystonia
33.33% I am able to do all of the above activities normally still ( 10-15)
-Even with dystonia can you still play many sports?
5.56% I can still play basketball
5.56% I can still play baseball
33.33% I can still ride a bike
5.56% I can still do several other sports
44.44% not applicable ( 10-17)
-Were you very accomplished in a sport before you got dystonia?
0% I am an accomplished golfer
0% I am an accomplished dart player
5.56% I am an accomplished pool or billiards player
5.56% I am an accomplished musician
27.78% I am accomplished in another activity which requires precise arm
and shoulder movements
61.11% not applicable ( 10-12)
-effects on golfing
15.79% I now have reduced golf swing
0% I now have tremor when I swing
5.26% I now sometimes freeze as I swing
5.26% I have trouble chipping
5.26% I have trouble driving
0% My main problem is with being able to grasp the club
78.95% not applicable ( 10-10)
-Do you still play music even if you developed dystonia?
0% Yes I play but have changed my instrument
0% Yes I have adapted my musical instrument
5.56% Yes but I play less often
0% Yes, I have adapted my stance
0% Yes but mostly not (I ) instruct
0% Yes but I have changed what musical instrument I play
44.44% I do not play music now but I listen to it
50.00% not applicable ( 10-18)
-If you play bagpipes is it your left arm that is more affected by dystonia?
0% Yes my left arm is more affected than the right
0% No my left arm is not more affected than the right
0% No my arms are equally affected
0% No my arms are not affected
57.89% I do not play bagpipes
42.11% not relevant (10-11)
-These questions ask about accommodations you make to deal with dystonia.
25.00% To control odd arm movements, I hang onto table ledges sometimes
0% In a car to control odd arm movements I often hang onto door or other handles
6.25% Weightlifting helps me control my movements better
6.25% I change my stance golfing, playing pool or darts because of dystonia
6.25% I have not made any changes to my activities because of dystonia
37.50% not applicable ( 10-16)
The series on shoulder and arm was an attempt to survey effects on those body parts but there is no technical designation usually of dystonia in those categories per se. Respondents may have been confused about who should answer or diverse in who did answer. There was a high rate of people answering not applicable’ which suggests that the category title itself was not clear. A better survey strategy may would be to know patient diagnosis to help cross reference it with responses.
The survey did not apparently reach many baseball, basketball, dart or bagpipe players. A wider survey would have been useful. One of the challenges surveying dystonia is reaching people affected. When dystonia affects sports or music performance there may be reluctance to come forward to take part in a survey even an anonymous one because of concerns about career. If there were less stigma for dystonia, surveys would be likely more engaged in.
The shoulder has a wide range of possible positions- up down, forward back, tilt m circle and the shoulders can be moved separately or at the same time, identically, alternately or together. Studying specific movement aspects affected may be useful.
Patients report a range of experiences with exercise. When the left shoulder is tight and in pain, hunching it may bring relief, and exaggeratedly pushing it down may also bring relief, Moving it forward or back may bring relief. It may be useful to study whether dystonia affects only one position or several and whether exercise brings relief from that position or if any change itself brings momentary relief. The theory of delay gating and dystonia kicking in after a short interval is examined more closely in a file on music, rhythm and dystonia in a later chapter.
The phenomenon of clicks is not universally reported. However 47.06% do report such clicking noises more in the dystonic than the nondystonic shoulder. Clicking has also been reported in those with neck and hand dystonia and may suggest that dystonia affects gas bubble production in those areas.
Those with dystonia of the shoulder report anecdotally that the clicking can happen in several places as they rotate the shoulder, with sound apparently coming from two or more locations separately. These clicks may bear study. One might also study if people who experience clicks in the muscles always have had them, and if that would itself be a marker for predisposition to dystonia, a weakness in the muscle or joint already. Were an early predictor found, it may hold potential to for instance disqualify a person from getting certain medications that pose a risk for creating tardive dyskinesia.
85.71% report that one shoulder goes higher than the other when they walk
66.67% report that one shoulder is higher than the other when they stand
The survey did not ask about gait, delay of motion that may be relevant if shoulder inequality affects walking.
range of motion
30.00% reported they could not rotate their shoulders in small circles equally
25.00% reported they could not hunch their shoulders equally
15.29% reported that bending the arms, one side bends differently from the other
It is not clear if there is an actual inability to perform these motions or if they are do-able but just painful. Some researche suggests that dystonia results in eventual contracting of muscles so that a desired motion is no longer possible. The phenomenon of sensory tricks suggests that motions that are difficult sometimes can still can be easily possible.
61.11% report that pain radiates from shoulder down to arm
55.56% report pain in an arm
33.33% report that dystonia started with pain in the shoulder
5.56% report no shoulder pain
The nature of pain was not surveyed in this section. Other questions about pain are asked in the surveys about symptoms to try to clarify if the pain is ache, stabbing pain, pressure, muscle tightness. A broader examination of pain was done in a separate file.
voluntary or involuntary
The hypothesis that dystonia is involuntary muscle movement is not fully supported by these surveys. Some patients report that they have involuntary arms jerks, flailings of arms and legs that would confirm that definition. However other patients report they have a perception of voluntary control and are pushing back against another very strong pressure. This survey confirms the differences of experience
those who report involuntary movements
71.43% report they often or sometimes have a shoulder turn in without them wanting it to do so
30.00% report that one arm will sometimes rise up on its own
30.00% report that an arm will sometimes flail out on its own
25.00% report that to control odd arm movements, they sometimes hang onto
11.11% report that the dystonia started with involuntary twisting of the shoulder
11.11% report that the dystonia started with involuntary twisting of the arm
10.00% report that their arms often move uncontrollably
those who report control of the movements
55.00% report that they are always in control of arm movements
If a person in trying to hold a shoulder level finds it moves to a lower position as if pushed there, that movement to the lower position may seem an involuntary movement, seeking a default and static position The person’s experience of dystonia in that case may be that dystonia is not a movement disorder as much as a position disorder. This seems to be a different experience from those who have random jerking or flailing of the arms.
The impact of shoulder and arm problems on daily life was reported.
44.44% have trouble pouring liquids
38.89% have more trouble bathing or showering because of dystonia
33.33% have trouble bringing a cup to the lips
27.78% have more trouble dressing themselves because of dystonia
16.67% have trouble reading for taps or door or cupboard handles
5.56% have trouble reaching for bank machine or Interact machine operation