- Charcot-Marie-Tooth Disease
- Interviews
mlweb's interview
How did all start?
Tripping over own feet & falling as a child
Do you already have a diagnosis? How long did it take you to get it?
Yes confirmed CMT1A with genetic test took 44 years to find out why I had symptoms, drop foot, frequently falling, muscle weakness legs arms & hands. PN
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurologist, rehabilitation MD, PT,OT, orthotist for AFO’s and leg braces. Physical therapy to strengthen muscles not affected by CMT most helpful. AFO & leg braces help as well
What has been the most useful thing for you so far?
PT
What have been your biggest difficulties?
Falling,& unable to do anything requiring hand strength
How has your social and family environment reacted? Have your social or family relationships changed?
Had to retire from being a pharmacist at age 47, loss of income
What things have you stopped doing?
Working, writing, hiking
What do you think about the future?
Worried about becoming weaker, needing a wheelchair, being unable to take care of my 80 yr old mother, who lives with us. Worried about losing friends when I can no longer participate in activities
So far, which years have been the best years in your life? What have you done during them?
25 - 47 married at 25, diagnosed at 47. Best years with my husband traveling & spending time with friends
What would you like to do if you didn’t have your condition?
I would still be earning a living. Being more active, spending more time with friends. I would be much happier & less anxious
Finally, what advice would you give to a person in a similar situation?
See a physical therapist and exercise daily and see an orthotist for AFO’s & leg braces if needed. Don’t be afraid to share that you have CMT. Increased awareness of CMT may lead to treatments
