- Transverse myelitis
- Interviews
Patricia's interview
How did all start?
After a stomach virus I started having a tingling feeling in my legs and feet.
Do you already have a diagnosis? How long did it take you to get it?
I was originally diagnosed in 1978 with
Guillian Barre Syndrome. It wasn't until 1994 that my diagnoses was changed to Transe Verse Myeilitis
For what medical specialties have you been treated? What has been the most useful specialty for your?
None
What has been the most useful thing for you so far?
Going to The Institute of Rehabilitation and Research in Houston, TX. They treated me as if I was not going to recover any more than I already had. Then If I did recover, that would be the icing on the cake. Unfortunately, I did not recover more than when I entered, but when I left I was able to take care of myself. IAt the beginning of my illness I was paralyzed from the brain stem down and lost my eyesight. When I entered TIRR I was a T5 para and had recovered my eyesight.
What have been your biggest difficulties?
Learning to live as a paraplegic, but with the help of TIRR, I think I did a good job of it. I raided 2 sons, drove a car, did all of my own shopping and a lot of the day to day house work and cooking. All from a wheelchair.
How has your social and family environment reacted? Have your social or family relationships changed?
My immediate family have been great. My husband left me after 8 years of illness and there is not much of a social life these days.
What things have you stopped doing?
I no longer drive, but that is more a financial thing than an ability issue. I used to drive with hand controls.
What do you think about the future?
I am 70 years old now, so it is the ormal ading issues, they just seem to come on a little quicker than a nono-TM-er
So far, which years have been the best years in your life? What have you done during them?
My best years were definitely pre TM. During those years I did some traveling and loved to dance. TM has definitely slowed that down.
What would you like to do if you didn’t have your condition?
Travel
If you had to describe your life in a sentence, what would it be?
At this time in my life I would have to say boring.
Finally, what advice would you give to a person in a similar situation?
If you have just been diagnoses with TM, DON'T GIVE UP! Lots of us do recover fully and some with slight issues to deal with. I was one of the few that didn't happen to. It will be a long haul though. Also, you MUST keep a positive attitude. I think that is the hardest, yet most important thing about the whole disease.
