PLS Data Input Form

Please answer any questions you are comfortable with.  Check the Share box if you want your info to show up on this website.  Data (without personal info or names) may be used to attract researchers to study PLS.  It is also helpful for those that are newly diagnosed.  If you would like to be anonymous, just enter your initials instead of your full name.  If you are updating your info, please check the Update box and enter only your name, birth date and info needing to be updated.  It may take a few days for your data to show up on the website.   Thanks for your participation.

 

First  Name

 

Last Name 

 

Gender

 Date of Birth

 MM/DD/YYYY

 

 Diagnosis

 

Date of Diagnosis

 

Neurologist or Clinic who made diagnosis

Has your diagnosis been confirmed by a 2nd neurologist/clinic?    

Were you misdiagnosed prior to PLS dx?    

How long did it take you to get a diagnosis?   

First Symptoms
Date

MM/YYYY        Area of Symptom Onset                 Comments

Additional Symptoms
Date

MM /YYYY       Area of Symptom                             Comments

  

Additional Other Symptoms         
Date

MM /YYYY       Spasms, Fasciculations,  Startle Reflex,  Uncontrollable lauging or crying,  etc.

Aids or treatments             Medications, Supplements, Canes,
Year started              AFO's, Baclofen Pump, Botox Injections, etc.

      

      

      

      

      

What bothers you the most in regards to functions or abilities you have lost?

Are you participating in Dr. Siddique's study at NWU (blood and family history)?

Are you participating in Dr. Floeter's study at the National Institute of Health (NIH)?

Do you have any family members with neurological disease? (ALS, MS, undiagnosed)

Is there anything you attribute to your onset of PLS? (stress, trauma, illness, etc.)

 

Where do you live?

City                                       State                               Country

          

Family, household, and hobbies info 

Employment info Are you still working?  What type of work do (did) you do?  How has your PLS affected your work? When did you retire? Have you applied for SSDI? Etc.

Household chores, daily living info  Do you hire outside help? Does spouse perform duties you used to do? Do you drive?

What new activities or interests have opened up to you because of your disabilities?

Additional Comments

 

Your Email Address

 Check the Share box if you want your info to show up on this website.  If you are updating your info, please check the Update box and enter only your name, birth date and info needing to be updated. 
Share this information on the website?    Update my data    
It might take a couple of days for your data to show up on the website.       

Thanks for your participation.

 

Send mail to susieq@als-pls.org with questions or comments about this web site.

Last modified 09/12/06