- Charcot-Marie-Tooth Disease
- Interviews
Colleen's interview
How did all start?
Cramping in toes, then tripping, sprained ankles, lost of feeling,
Do you already have a diagnosis? How long did it take you to get it?
It was about 3 years before I was told what I had. Just recently I had genetic testing results back and I have cmt 1E. Which I was told it's one if the more rare forms of it.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Neurologist went through about 5 before I found one I liked. My primary dr also has been a great help.
What has been the most useful thing for you so far?
My braces Allards Toe-Off Blue Rockers are the best. Its helped me walk again. Before very tired out and was it was like I was marching.
What have been your biggest difficulties?
Trying to do things myself. I can't do what I used to.
How has your social and family environment reacted? Have your social or family relationships changed?
Family has been really good about it good support system for the most part.
Social, I used to power walk 3 miles a day x6 days. Can't do any more. Used to go hiking as le oui st every weekend, no more.
What things have you stopped doing?
Power walking, hiking, gardening, cross stitching, some sewing, a lot of things around the house.
What do you think about the future?
Try to take it day by day. I hope my sewing is not taken away.
So far, which years have been the best years in your life? What have you done during them?
In my 20- early 40's hiking, walking, Camping
What would you like to do if you didn’t have your condition?
Take normal care vacations, get back into hiking and power w as lking.
If you had to describe your life in a sentence, what would it be?
My Grandkids are my joy of life.
Finally, what advice would you give to a person in a similar situation?
Hang in there, Find things that work for you. Its just a different way to live.
