- Charcot-Marie-Tooth Disease
- Interviews
pattyk66's interview
How did all start?
Have had neuropathy for 26 yrs from a blood disorder called MGUS. Two years ago started having trouble walking, lifting legs, stumbling a lot. Broke foot twice. Went to neurologist whom I hadn’t seen for 15 years. He did a free genetic test. Came back positive for CMT.
Do you already have a diagnosis? How long did it take you to get it?
One month.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Don’t understand question
What has been the most useful thing for you so far?
I’m too new to this. Just validating that what I am suffering from is real and other people have it.
What have been your biggest difficulties?
Walking, pain and getting my husband to see how bad I am getting
How has your social and family environment reacted? Have your social or family relationships changed?
Pretty supportive but they don’t have a clue as to how severe it is.
What things have you stopped doing?
Hiking, daily showers, shopping
What do you think about the future?
I am the one in charge of my life. I hope I stay positive and always have my husband helping me.
So far, which years have been the best years in your life? What have you done during them?
My 60s. We started traveling across US, I lost 80 lbs, have grandkids. Went to Italy. Celebrated 50 years of marriage.
What would you like to do if you didn’t have your condition?
Hike, travel more
If you had to describe your life in a sentence, what would it be?
Wonderful and loving
Finally, what advice would you give to a person in a similar situation?
I have non. I haven’t faced any of the horribleness others have endured
