- Charcot-Marie-Tooth Disease
- Interviews
thomas.strickland0's interview
How did all start?
At birth. My parents had a hard time teaching me to walk, they also had a hard time teaching me to hold a pen correctly. I would always fall and I was misdiagnosed with cerebral palsy. It took a really long time to get diagnosed. It took several times at the hospital just recently in my 30’s to get a real diagnosis. I got septicemia twice and nearly killed me.
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed at age 35 finally. I was diagnosed at the University of North Carolina via DNA test.
For what medical specialties have you been treated? What has been the most useful specialty for your?
So far it has been hernia repair. Loss of bone in my feet. Future reconstruction is in the works. I’ve had my tendons in my left foot cut and lenghthened, I’ve suffered from many broken bones in my feet. At the moment I’m getting myself checked for restless leg, and scoliosis because my spine is curved. The list is getting bigger unfortunately now that I’m getting older.
What has been the most useful thing for you so far?
Surgery, AFO’s, and pain meds.
What have been your biggest difficulties?
Carrying things, walking up and down stairs, muscle weakness, fatigue, severe pain in my hands.
How has your social and family environment reacted? Have your social or family relationships changed?
Not very well to say the least. My fiancé has accepted it. However my parents not so much. I’ve lost my ability to drive and I rely on them to get to places I need to go. My parents don’t like taking me places. I’ve been working on disability for the last three years and I’m still waiting. Im unable to even pay my bills.
What things have you stopped doing?
Smoking thank god, working, it’s very hard to use my hands for lengthy times and I can’t stand up for long periods of time, and sleeping I never get any sleep.
What do you think about the future?
It’s gonna be a rough one.
So far, which years have been the best years in your life? What have you done during them?
I would have to say my teens too late 20’s I got really involved with my church doing mission trips.
What would you like to do if you didn’t have your condition?
I would like to do rock climbing. I loved working on electronics which everything that involved electricity I was really well versed in. However that’s really hard work and some can be very tedious. My hands really put a damper on that.
If you had to describe your life in a sentence, what would it be?
My life is a RollerCoaster right now.
Finally, what advice would you give to a person in a similar situation?
If you have this disease please get help as early as you can. My parents couldn’t get me the help I needed because the treatments were rudimentary still.
