Instructions For Completing the Questionnaire
Most of the survey questions are open-ended. We have provided only minimal
space on the questionnaire for your responses due to our space limitations.
For most of these questions, you are going to need additional paper to
provide us with your answers. We urge you to use additional paper and to
provide as thorough answers to each of the questions as possible. When you
use additional paper, please number each of the responses so that they can
be properly matched with the appropriate question.
Please answer the questions to the best of your ability. If you have
difficulty remembering dates, the specific sequence of events and their
durations, medications or any other specific information requested in the
survey, please discuss these issues with your families and with your
doctors. Attempt to reconstruct events as best as you can. It is important
that we collect accurate information. If you are providing us with
approximations or with your best recollections, that is fine. Just indicate
the level of accuracy of the information in association with the information
you provide us. For example, if you are not certain of the exact amount of
time you experienced flu symptoms before you contracted transverse myelitis,
please indicate that your answer is an approximation.
If you have difficulty writing or typing, please ask someone to assist you
in completing the survey. So long as the responses are properly numbered,
you may use whatever paper you would like to complete the survey. Also, if
it is easier for you to complete and send the information electronically,
please feel free to type your responses and e-mail them to us
electronically. You may send them to srulyosef(AT)AOL.com. We would like to
begin the analysis of the survey results as quickly as possible. We are
planning on both a content and statistical analysis of the data and
information. Data coding, data entry, and data and information analysis are
time intensive tasks. Please try to return the surveys to us by March 1st.
The surveys should be mailed to:
Transverse Myelitis Association
c/o Sanford J. Siegel
1787 Sutter Parkway
Powell, Ohio 43065
email: srulyosef(AT)AOL.com
In the process of reviewing and filling out the answers to the survey, you
may think of additional issues or information that we have not covered in
this first questionnaire. When you return your responses, please provide us
with any questions or issues you would like to see included in future
surveys. You may also wish to discuss this survey with your doctors. If
they have additional issues or information that they would find useful,
please include those areas, as well. If your doctor is interested in
reviewing the results of the research, please communicate his/her interest
to us. Please provide us with their name and address and we will include
them in our dissemination of the results.
We greatly appreciate your willingness to provide us with this very personal
information. We believe that this information will ultimately help doctors
better understand transverse myelitis and the people who have contracted
this illness. We believe that this information will ultimately help our
members.
We will publish the results of the survey analysis in future newsletters.
If you have any questions or concerns about the survey, please feel free to
contact Sandy Siegel or Deanne Gilmur.
Sanford J. Siegel
Newsletter Editor
1787 Sutter Parkway
Powell, OH 43065
Thanks for helping with the postage...
As you can well imagine, the Transverse Myelitis Association mailings have
become a significant expense. We are asking that you assist us by
providing the postage to return the surveys. In most cases, the survey
responses will weigh more than one ounce; the postage will be more than a
32 cent first class stamp. Please be sure that the proper postage is on the
return, so that your survey is delivered. We greatly appreciate your
willingness to assume this cost.
Questionnaire for the Transverse Myelitis Association
Please refer to the instructions above before filling out the survey.
When you have completed the survey, please return it to:
Transverse Myelitis Association
c/o Sanford J. Siegel
1787 Sutter Parkway, Powell, Ohio 43065.
___ Check if this is the address to which you would like TMA materials
mailed.
Name (of person with transverse myelitis): ________________________________
Address (Street, P.O. Box):________________________________________________
City, State, Zip Code: ____________________________________________________
Home Phone (include area code): --_________________________________________
E-Mail Address: ___________________________________________________________
___ Check if this is the address to which you would like TMA materials
mailed.
(Fill out the name and relationship spaces only, if address is the same
as above)
Name (if filling out form for person with transverse myelitis):
______________________________
Address (Street, P.O. Box):________________________________________________
City, State, Zip Code: ____________________________________________________
Home Phone (include area code): --_________________________________________
E-Mail Address: __________________________________________________________
Relationship to person with transverse myelitis: __________________________
---------------------------------------------------------------------------
1. Date of birth: ________________________
2. Current age: ________________________
3. Sex: Male Female
4. Date contracted transverse myelitis: ___________________________________
5. Age at onset of transverse myelitis: ________
__ Check box if all of the above information can be included in the
membership directory
---------------------------------------------------------------------------
6. Location of lesions, if any were identified: (e.g., C2 or T10):
_____________________
7. Lists the medical tests that were used to make the diagnosis of
transverse myelitis: __________________________________________________
_______________________________________________________________________
_______________________________________________________________________
8a. Did you experience flu symptoms prior to the onset of transverse
myelitis? YES NO
8b. If so, how long did you experience the flu symptoms before the
onset of transverse myelitis? ___________________________
8c. If not, what, if any, symptoms did you experience before the onset?
______________________________________________________________________
______________________________________________________________________
9a. What was your initial diagnosis (e.g., acute transverse myelitis,
multiple sclerosis)? _________________________________
9b. What is your current diagnosis? (Include at what level of your
spinal cord the inflammation was identified, e.g., T10, C2).
______________________________________________________________________
9c. How much time elapsed between your initial diagnosis and your
current diagnosis? _________________________________
10. What type of doctor(s) made the diagnosis (e.g., neurologist,
physical medicine, general practitioner, internal medicine)?
______________________________________________________________________
______________________________________________________________________
11. Describe your symptoms at the initial onset of transverse myelitis
(e.g., weakness, numbness, pain, bowl/bladder disturbance):
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
12a. If you were treated with steroids when you contracted transverse
myelitis, how soon after onset was treatment started and for how
long did you receive them? (If you did not receive steroids, write
"no" in the space):
______________________________________________________
12b. Which steroids did you receive?
______________________________________________________________________
______________________________________________________________________
13. What other medications were you treated with at the onset of
transverse myelitis and what was the purpose and duration of each
of the treatments?
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
14. From the initial onset of transverse myelitis, how long was your
hospital stay (not at a rehabilitation hospital):
____________________________________________________
15a. Describe your most severe symptoms:
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
15b. At what point in the history of your illness did you experience
these most severe symptoms? (e.g., at the onset, an hour after the
onset, two months after the onset):
______________________________________________________________________
16. If you were hospitalized in a rehabilitation facility, how long
were you there? ___________
17. What type of doctor(s) is/are currently treating you for transverse
myelitis? (e.g., physical medicine, neurologist):
______________________________________________________________________
______________________________________________________________________
18. Describe your current symptoms:
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
19. If you have experienced pain as a symptom of transverse myelitis,
please describe where the pain is located, under what conditions
(positions, activities) the pain is the most severe, and under what
conditions the pain is least severe (if no pain, write "none"):
______________________________________________________________________
______________________________________________________________________
20. If your doctor(s) theorized as to what caused your transverse
myelitis, please describe what you were told. If you received more
than one explanation from more than one doctor, please provide each
of their theories. Identify the type of doctor that offered each
theory.
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
21. If you were treated by a physical therapist, how long did you
receive treatments? Please indicate how much of the therapy was
in-patient and how much was out-patient therapy.
21a. Duration (e.g., 3 months, 1 year):
In-patient _____ Out-patient______
21b. Frequency (e.g., 3 times per week, twice a month):
In-patient _____ Out-patient _____
21c. Are you currently receiving physical therapy? YES NO
22. If you were treated by an occupational therapist, how long did you
receive treatments? Please indicate how much of the therapy was
in-patient and how much was out-patient therapy.
22a. Duration (e.g., 3 months, 1 year):
In-patient _____ Out-patient______
22b. Frequency (e.g., 3 times per week, twice a month):
In-patient _____ Out-patient______
22c. Are you currently receiving occupational therapy? YES NO
23. Describe the various treatments and therapies you have received for
your transverse myelitis symptoms (include medical, physical,
occupational and non-traditional therapies):
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
24. What are your impressions as to which of these treatments and
therapies have been most beneficial or effective for you? Why do
you believe these treatments and therapies have helped?
______________________________________________________________________
______________________________________________________________________
______________________________________________________________________
25. Describe the recovery you have experienced from the symptoms or
effects of transverse myelitis. Please provide the specific
improvements and approximately when those took place.
25a. Within the first 6 months following onset:
______________________________________________________________________
______________________________________________________________________
25b. Within the second 6 months:
______________________________________________________________________
______________________________________________________________________
25c. Within the third 6 months:
______________________________________________________________________
______________________________________________________________________
25d. Within the fourth 6 months:
______________________________________________________________________
______________________________________________________________________
25e. Any improvements after two years:
______________________________________________________________________
______________________________________________________________________
26. For each of the medications you were prescribed, please describe
the symptoms it was meant to treat, how long you took it and if you
stopped taking it, why. If you are currently taking the medication,
write "currently taking" in the last column.
Medication ___________________________________________________________
Symptoms _____________________________________________________________
Duration ________________________
Why Stopped __________________________________________________________
Medication ___________________________________________________________
Symptoms _____________________________________________________________
Duration ________________________
Why Stopped __________________________________________________________
Medication ___________________________________________________________
Symptoms _____________________________________________________________
Duration ________________________
Why Stopped __________________________________________________________
Medication ___________________________________________________________
Symptoms _____________________________________________________________
Duration ________________________
Why Stopped __________________________________________________________
Medication ___________________________________________________________
Symptoms _____________________________________________________________
Duration ________________________
Why Stopped __________________________________________________________
Medication ___________________________________________________________
Symptoms _____________________________________________________________
Duration ________________________
Why Stopped __________________________________________________________
27. If you have been prescribed pain medications, which have been the
most beneficial?
______________________________________________________________________
______________________________________________________________________
28a. Describe the type of health care coverage you had while being
treated for transverse myelitis. Did your insurance adequately
cover your treatment needs?
______________________________________________________________________
______________________________________________________________________
28b. Do you still have the same health care provider? If not, have you
changed providers intentionally to better meet your needs due to
transverse myelitis? Has the change met your needs?
______________________________________________________________________
______________________________________________________________________
28c. If you had no health care coverage while being treated for
transverse myelitis, describe any assistance you received with your
health care costs. Are you still without health care coverage? Are
you still receiving assistance with your health care costs? Are
your needs being met?
______________________________________________________________________
______________________________________________________________________
29. If you have received any assistance from federal, state or local
programs, please describe the specific agencies and the assistance
you received (both financial and services):
______________________________________________________________________
______________________________________________________________________
30. Describe all of the adaptive devices you have used. Separately
list the devices you currently use (e.g., leg braces, ventilator,
walker, wheelchair):
______________________________________________________________________
______________________________________________________________________
31. Please provide your opinions as to the goals and activities in
which the Transverse Myelitis Association should adopt and
participate:
______________________________________________________________________
______________________________________________________________________
32. If you are interested in volunteering your assistance to TMA,
please identify in what activities you would be interested in
contributing your time and talents.
______________________________________________________________________
______________________________________________________________________
Thank you!
----
Jim Lubin jlubin(AT)eskimo.com
Bothell, WA, USA <http://www.eskimo.com/~jlubin>
disAbility Resources: <http://www.eskimo.com/~jlubin/disabled>