- Charcot-Marie-Tooth Disease
- Interviews
Lili's interview
How did all start?
When i was a baby i never crawled my momma knew something was wrong, when i got older i started falling, ankle sprains and an EMG at Vanderbilt Medical Center at age 12.. thats when they told my parents
Do you already have a diagnosis? How long did it take you to get it?
that was 41 yrs ago , i dont think it took long
For what medical specialties have you been treated? What has been the most useful specialty for your?
ive done everything from AFO's to surgery nothing has helped
What has been the most useful thing for you so far?
my power wheelchair
What have been your biggest difficulties?
taking care of my now 25 yr old daughter who has CMT worse than I do.. she has been in a chair for 18 years
How has your social and family environment reacted? Have your social or family relationships changed?
since being in a wheelchair i have no family i can visit due to they all have stairs, nothing to really do socially except movie, going out to eat or shopping
What things have you stopped doing?
walking, visiting family,going on adventures
What do you think about the future?
eventually i will have a trache and probably be in an assisted living home
So far, which years have been the best years in your life? What have you done during them?
my best yr was the year i had my daughter the worse yr was 2013 when they told me i needed my leg amputated
What would you like to do if you didn’t have your condition?
walk, go to the beach, dance
If you had to describe your life in a sentence, what would it be?
It is what it is..
Finally, what advice would you give to a person in a similar situation?
never give up.. theres always a way to do what you want
