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Post-Polio Questionnaire

The goal of this questionnaire is to gather information about the effects of Post-Polio Syndrome (PPS) in the hope that it may help to shed some light on possible causes and provide better direction for managing this condition. It was prepared by Edward Bollenbach, M.Sc., and Marcia Falconer, Ph.D., who themselves have PPS as well as having graduate degrees in biology. The easiest way to fill out the questionairre is electronically. However, if you are unable to do this for any reason you can also send it by regular mail to: Edward Bollenbach, Northwestern CT. Community College, Park Place East, Winsted CT., 06098.

How To Fill out this Questionnaire, Electronically!

After you receive the questionnaire, please do the following:

  1. VERY IMPORTANT! FIRSTůSave the Questionnaire you received in the email as "PPS Questionnaire" on your computer. (If you have Netscape, you may want to save it in the folder entitled, "My Documents"). If you answer the questionnaire in the form in which it comes to you by email, none of your answers will come back to us!
  2. Close the Questionnaire you received as email. Go to your file "PPS Questionnaire" and open it.
  3. Begin to answer the questions. You can indicate your choice of answers in several ways:

    By 'selecting' the appropriate answer and then underline it by pressing U.

    Or 'select' the appropriate text and highlight it or change the color of the text.

    Where you are asked to choose one number out of five, you can delete the number that would be your choice and substitute an "X".

    You can use any other method as long as it clearly indicates your choice.

  4. For answers requiring you to type in a year, or other information, just begin to type in

    the appropriate space.

  5. You do NOT have to complete the entire questionnaire in one sitting. When you have

    answered all the questions, or as many as you want to answer at one time, save your answers by saving the questionnaire. You can go back to the file and answer the remaining questions at a latter time - always remember to save after you're done.

  6. When you are finished. Save the Questionnaire and attach the file to your email and

send it to:

edward.bollenbach@snet.net or Bollenbach@commnet.edu

Thank You Very Much,

Eddie Bollenbach and Marcia Falconer

Questions:

  1. I am:

    a) Male

    b) Female

    My year of birth is:

  2. The year I caught polio was:

3. I was originally diagnosed with:

a) Paralytic Polio

b) Non-Paralytic Polio

c) Was not 'officially' diagnosed

d) Don't know

4. Was your polio: a) Spinal b) Bulbar c) Both d) Don't know

5. How many years after Polio did you first notice new problems of unexplained muscle weakness, fatigue and/or pain?

6. Can you describe a specific event that seemed to cause your PPS? (for example, an accident, a major life stress, a illness)





What year did the event occur?

Briefly describe the event:


 

 

7. Have you been diagnosed with, or have reason to believe that you have, another muscular or neurological condition which may worsen or be confused with your PPS symptoms?

  1. I have no known other condition
  2. ME or Fibromyalgia
  3. MS
  4. Chronic Fatigue or post-viral syndrome
  5. Other (please identify)

Instructions:

Please circle the most appropriate choices below in the column "Prior to PPS" and then do the same for "Since the onset of PPS". The scale is from 1 through 5 with

1 least severe (none or barely noticeable) and 5 the most severe.

THE NEXT 5 QUESTIONS ASK FOR RESPONSES BOTH BEFORE AND AFTER YOU DEVELOPED PPS. IF YOU DO NOT HAVE PPS ANSWER ONLY THE LEFT COLUMN.
Prior to PPS Since the Onset of PPS

(a little) ----------------------------------> (a lot) (a little) ----------------------------------> (a lot)

8. I regularly felt/feel like I am catching the flu when I am tired.

0 1 2 3 4 5 0 1 2 3 4 5

9. I develop "brain fatigue" when tired. (Ex. trouble finding words, making strange typos when typing, difficulty with short term memory, etc.)

0 1 2 3 4 5 0 1 2 3 4 5

10. I often "hit the fatigue wall" (experience sudden onset of total physical and mental fatigue) after a period of physical exertion.

0 1 2 3 4 5 0 1 2 3 4 5

11. I often "hit the fatigue wall" (sudden onset of total physical and mental fatigue) after a period of emotional stress.
0 1 2 3 4 5 0 1 2 3 4 5

12. I had/have noticeable weakness in my limbs after minor exertion:

0 1 2 3 4 5 0 1 2 3 4 5

-------------------------------------------------------------------------------------------------

13. Some people with PPS have 'good days' (when they feel energetic, alert and generally good) and 'bad days' (when they feel extremely tired, mentally dull and unable to function well). Do you experience regular alternation of good and bad days?

14. If you do experience a pattern of 'good' days followed by 'bad' days followed by 'good' days, etc., can you assign any cause(s) to the onset of bad days such as: (indicate all that apply to you)

    1. Overuse of muscles (e.g. physically 'overdoing')
    2. Undergoing a period of emotional stress
    3. Catching a cold or other mild illness
    4. Travel (by car, plane, train, bus)
    5. Staying up too late at night (e.g. not getting enough sleep)
    6. 'Bad' days sometimes have no detectable cause
    7. Other, please describe

15. When a muscle affected by PPS becomes fatigued from overuse what sensation(s) do you feel in that muscle? Grade the severity of these feelings where 0 means you do NOT experience this feeling, and 5 means you feel it intensely.

None-----------------> Intensely

A creepy, crawly feeling

0 1 2 3 4 5

Pain as in a cramp

0 1 2 3 4 5

Burning

0 1 2 3 4 5

Aching

0 1 2 3 4 5

Muscle gives out and won't work
0 1 2 3 4 5

Other (describe)

16. In the year immediately following contraction of Polio, indicate the greatest amount of weakness you had in each of the following areas: (where 0 means all or some muscles in the area were unaffected and 5 means all or some muscles were completely paralyzed)


Unaffected-----------------> Paralyzed



a) Neck

0 1 2 3 4 5

b) Upper Back

0 1 2 3 4 5


c) Mid Back

0 1 2 3 4 5


d) Lower Back/Hip

0 1 2 3 4 5


e) Breathing muscles

0 1 2 3 4 5


f) Left upper arm/shoulder

0 1 2 3 4 5


g)Left lower arm/hand

0 1 2 3 4 5

h) Right upper arm/shoulder

0 1 2 3 4 5

i) Right lower arm/hand

0 1 2 3 4 5

j) Front of right thigh (quads,etc.)

0 1 2 3 4 5

k) Back of right thigh

0 1 2 3 4 5

l) Front of right lower leg

0 1 2 3 4 5

m) Rear of right lower leg (calf)

0 1 2 3 4 5

n) Front of left thigh&(quads, etc.)

0 1 2 3 4 5

o) Back of left thigh

0 1 2 3 4 5

p) Front of left lower leg

0 1 2 3 4 5

q) Back of left lower leg (calf)

0 1 2 3 4 5

r) Other (please describe)

0 1 2 3 4 5


17. Please indicate the best level of recovery you achieved in each

area. The scale goes from 0 to 5 where 0 means NO recovery and 5

indicates COMPLETE recovery with no residual weakness or paralysis.

No recovery -----------> Complete recovery


a) Neck

0 1 2 3 4 5

b) Upper Back

0 1 2 3 4 5

c) Mid Back

0 1 2 3 4 5

d) Lower Back/Hip

0 1 2 3 4 5

e) Breathing muscles

0 1 2 3 4 5

f) Left upper arm/shoulder

0 1 2 3 4 5

g) Lower left arm/hand

0 1 2 3 4 5

h) Right upper arm/shoulder

0 1 2 3 4 5

i) Lower right arm/hand&

0 1 2 3 4 5

j) Front of right thigh (quads,etc.)

0 1 2 3 4 5

k) Back of right thigh

0 1 2 3 4 5

l) Front of right lower leg

0 1 2 3 4 5

m) Rear of right lower leg (calf)

0 1 2 3 4 5

n) Front of left thigh

0 1 2 3 4 5

o) Back of left thigh

0 1 2 3 4 5

p) Front of left lower leg

0 1 2 3 4 5

q) Back of left lower leg (calf)

0 1 2 3 4 5

r) Other (please describe)

0 1 2 3 4 5

18. Please indicate the year, or period of years, when you were at your physical best.

 

19. Since the onset of PPS, have you developed new muscular weakness? If so, indicate the relative amount of weakness where 0 means no new weakness, 1 means barely noticeable new weakness and 5 means it is so weak that you can no longer use it.


no new weakness------------------->severe new weakness

a) Neck

0 1 2 3 4 5

b) Upper Back

0 1 2 3 4 5

c) Mid Back

0 1 2 3 4 5

d) Lower Back/Hip

0 1 2 3 4 5

e) Breathing muscles

0 1 2 3 4 5

f) Left upper arm/shoulder

0 1 2 3 4 5

g) Lower left arm/hand

0 1 2 3 4 5

h) Right upper arm/shoulder

0 1 2 3 4 5

i) Lower right arm/hand

0 1 2 3 4 5

j) Front of right thigh (quads,etc.)
0 1 2 3 4 5

k) Back of right thigh
0 1 2 3 4 5

l) Front of right lower leg
0 1 2 3 4 5

m) Rear of right lower leg (calf)
0 1 2 3 4 5

n) Front of left thigh(quads, etc.)
0 1 2 3 4 5

o) Back of left thigh
0 1 2 3 4 5

p) Front of left lower leg
0 1 2 3 4 5

q) Back of left lower leg (calf)
0 1 2 3 4 5

r) Other (please describe)
0 1 2 3 4 5

20. If you have new muscle weakness, has your doctor given you a reason for this?

(for example: a lot of overuse, not enough exercise, or unsure). Please describe and indicate if you agree with doctor's reasoning.





21. When you were at your physical best, did you regularly engage in recreation or sports which involved strenuous physical activity?

a) Yes

b) No

If Yes, were you aware of any physical limitations or constraints on your activities? Please describe:

 

22. Before PPS, if you had noticeable weakness or paralysis in BOTH your legs, which was the STRONGER leg, the one used for standing up, etc.?

a) Left leg

b) Right leg

c) Both the same

23. AFTER PPS, which leg do you consider to be the stronger limb?

a) Left leg

b) Right leg

c) Both the same

24. When you first experienced functional loss from PPS was its appearance:

    1. Abrupt in appearance with no 'trigger' event
    2. Abrupt in appearance with a specific 'trigger' event
    3. Slow in developing with no 'trigger' event
    4. Slow in developing with a specific 'trigger' event

25. In the first year following the appearance of PPS were your symptoms:

a) Mildly uncomfortable but not disabling

b) Somewhat disabling (ex. I tire very easily)

c) Moderately disabling (ex. difficulty climbing stairs)

d) Very disabling - Life altering (ex. totally unable to climb stairs)

e) Severely disabling (ex. need assistance in dressing)

26. If your physical condition has deteriorated since the onset of PPS, has this deterioration been:

    1. A steady worsening of symptoms
    2. Periods of sudden worsening of symptoms followed by periods of stabilization
    3. Other (please describe)

      27. Do any of the following make your PPS symptoms worse? Circle all that apply.

      a) A head cold

      b.)A medication you are taking (identify the medication)

      c) A particular diet or food

      d) Allergies

      e) Use or overuse of involved muscles

      f) External stress (example: work-related stress, family problems)

      g) Physical stress including trauma (example: accident or treatment that results in shaking or movement of your back or limbs)

      28. How would you assess your current level of physical fitness? Please explain with an example (Ex. Poor - I get too fatigued to be up more than 2 hours)

      a) Very Poor

      b) Poor

      c) Fair

      d) Good

      e) Excellent

      29. How would you assess your level of physical fitness prior to PPS? Please explain with an example (Ex. Good - I used to do brisk 30 min. walks everyday)

      a) Very Poor

      b) Poor

      c) Fair

      d) Good

      e) Excellent

      30. If you can remember your level of disability immediately after infectious polio, is your level of disability now:

      a) Better than it was then

      b) About the same as it was then

      c) Worse than it was then

      d.)Unsure or Don't remember

31. Which of the following resembles the treatment you received in the hospital after acute polio?

    1. Bed rest with very little activity.

      b) Vigorous physical therapy

      c) Exercise until I was exhausted

      d) Graduated exercises with slow progression to normal activity

      e) Other (please describe)

      f) No special treatment

      g) Not hospitalized

      32. If you know---When you were discharged from the hospital were you or your parents told that: (indicate all that apply)

      a) You would not recover more than at discharge

      b.)You would recover but with some deficit

      c.)The degree of recovery was uncertain

      d.)Recovery would be dependent upon your own efforts (exercising, etc.)

      e) You would recover completely

      f) Don't know this information

      g) Not hospitalized

      33. Which of the following resembles your treatment or rehabilitation after your release from the hospital or if you were not hospitalized?

      a) Bed Rest

      b) Vigorous Physical Therapy

      c) Exercise until I was exhausted

      d.)Graduated exercises with slow progression to normal activity 	

      e) No special treatment

34. Did you exceed the expectations for your recovery. (Did you do better than they thought you would?)

a.)Yes

b.)No

c) In some ways, please describe

35. If you have developed new weakness in both legs since the onset of PPS, please indicate all statements that apply.

e)Both legs now are equally affected by PPS


36. Please read this question carefully. Most people who had polio have some muscles that were NOT originally affected by the disease. These normal muscles are used, sometimes throughout life, without any new weakness. However, sometimes polio survivors develop weakness in muscles that were not previously affected by polio. Do you have weakness now in an area where, as far as you know, your strength was not affected by the original Polio illness? If so, indicate the relative amount of weakness that you have NOW where 0 means no new weakness, 1 means barely noticeable new weakness and 5 means it is so weak that you can no longer use it. (If the area had even a small amount of weakness when you were ill with Polio, mark the "X" don't try to indicate the relative weakness.)

(This section is designed to find where new weakness has developed in areas that seemed completely unaffected by Polio.)

unaffected--------------> now is severely weak


a) Neck
0 1 2 3 4 5

b) Upper Back

0 1 2 3 4 5

c) Mid Back

0 1 2 3 4 5

d) Lower Back/Hip

0 1 2 3 4 5

e) Breathing muscles

0 1 2 3 4 5

f) Left upper arm/shoulder

0 1 2 3 4 5

g) Lower left arm/hand

0 1 2 3 4 5

h) Right upper arm/shoulder

0 1 2 3 4 5

i) Lower right arm/hand

0 1 2 3 4 5

j) Front of right thigh (quads,etc.)

0 1 2 3 4 5

k) Back of right thigh

0 1 2 3 4 5

l) Front of right lower leg

0 1 2 3 4 5

m) Rear of right lower leg (calf)

0 1 2 3 4 5

n) Front of left thigh (quads, etc.)

0 1 2 3 4 5

o) Back of left thigh

0 1 2 3 4 5

p) Front of left lower leg

0 1 2 3 4 5

q) Back of left lower leg (calf)

0 1 2 3 4 5

r) Other (please describe)

0 1 2 3 4 5

37. With regard to your sleep patterns circle each statement below which you feel applies to you.

a) I sleep restfully and well most nights

b) I sleep restlessly and wake frequently

c) I have difficulty falling asleep

d) I have difficulty staying asleep

e) I dream often and remember my dreams

f) I don't remember my dreams and am usually unaware of dreaming

g) When I wake up I feel tired and unrefreshed most of the time.

h) When I wake up I usually feel well and rested.



38. If you had an EMG what were the results (if you know)?

 

 

 

39. If you can walk, or previously could walk, do you have a discrepancy in the length of your legs?

a) Yes

b) No

 

 

 

40. If you do have a leg length discrepancy, what is the difference in length?

 

 

41. At the current time are you able to walk 2 city blocks or more without using aids?

a) Yes

b) No

ANSWER THE FOLLOWING QUESTION ABOUT YOUR USE OF ASSISTIVE DEVICES BEFORE AND AFTER PPS.

42. With regard to the use of a wheelchair, power wheelchair, or motorized scooter which is true about your experience? (Circle your response for each of the conditions stated below):

After recovering from acute polio After developing PPS
a) Used occasionally (ex. only in airports) a) Used occasionally (ex. only in airports)
b) Used often (ex. for travel and in malls) b) Used often (ex. for travel and in malls)
c) Used always c) Used always
d) Never use d) Never use

43. With regard to crutches which is true about your experience?

After recovering from acute polio After developing PPS
a) Used occasionally (ex. only in airports) a) Used occasionally (ex. only in airports)
b) Used often (ex. for travel and in malls) b) Used often (ex. for travel and in malls)
c) Used always c) Used always
d) Never use d) Never use

44. With regard to braces (calipers), which is true about your experience?

After recovering from acute polio After developing PPS
a) Didn't have a brace a) Didn't have a brace
b) Used lower leg brace b) Used lower leg brace
c ) Used full leg brace c ) Used full leg brace
d) Used back brace d) Used back brace
e) Other e) Other

45. Many polio survivors have scoliosis (a curving or twisting of the spine). If you have scoliosis which is true:

a) My spine curves to the right in my upper back

b.) My spine curves to the left in my upper back

c) My spine curves to the right in my lower back

d) My spine curves to the left in my lower back

e) My spine twists in my upper back

f) My spine twists in my lower back

g) Other (explain)


46. When you had acute polio were you unconscious or in a coma?

a) Yes

b) No

c) Don't know


47. When you were at your physical best, before PPS, was your body weight:

48. Currently would you assess your body weight as:

a.) Within normal range for my height and build

b.)Underweight for my height and build

c.)Overweight for my height and build

      I now weigh about _______ lbs. or kilos.

49. If you were employed since your acute illness and before PPS would you say that your employment duties involved:

a) strenuous physical activity

b) moderate physical activity

c)sedentary work


50. What is your present state of employment?

a.) Full Time

b.)Full time but with a lighter workload since PPS

c.)Part Time

d.). Part Time but with a lighter workload since PPS
e) Unemployed

f) Normal Retirement

g) Disability Retirement

h) No Retirement but unable to work

 

 Copyright 1999 Edward Bollenbach and Marcia Falconer All Rights Reserved