Bonnie's interview
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How did all start?
Pain in my little toe about 1997. I was 47 years old.
Do you already have a diagnosis? How long did it take you to get it?
I went to the Mayo Clinic in AZ and got the diagnosis. I had several appointments at neurologists that confirmed the neuropathy but had no idea how or why before I went to Mayo Clinic.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Went to the CMT Center of excellence twice. Bottom line, other than AFOs there nothing to be done. I have always suffered from depression and anxiety, which I take medication to control. I have IBS which I control with Imodium.
What has been the most useful thing for you so far?
Pranayama Breathing for healing brought circulation back to my feet and thus I no longer have pain. AFOs fix my balance issues and stop the drop foot. Electric acupuncture is helping rebuild calf muscles that have atrophied. I was told it was the nerve dying not the sheath around the nerve.
What have been your biggest difficulties?
Pain with the neuropathy, I thought I might lose toes, but overcame that with the breathing exercises. falling regularly until I got AFOs. My hands have now lost most if not all muscle. When it is cold, my hands will not work properly. I just got arthritic gloves to keep my hands warm and help with my grip.
What things have you stopped doing?
I can’t get myself up from the floor. I can no longer have fun at the beach. Difficult to walk in in the sand, can’t walk down to the surf, can’t stay upright in the surf or pick myself up. I no longer go hiking, I could not ride my two wheel bicycle so I just got a trike. Fatigue has been very bad this last year as I was sick a good part of the year with lung issues. Stairs are very difficult. I can no longer dance, which was a big part of my life, I danced ballet for 10 years when young and loved to dance as an adult. Glad I got that out of the way when I was young. I can no longer get out of my kayak without help. Can’t load the kayak into the truck. I can no longer run or jump.
What do you think about the future?
I don’t know what the future will bring although CMT is degenerative. I assume at some point I will be in a wheel chair, but not yet. My feet have not gotten worse over time, but my hands are degenerating. I just keep on keeping on. The CMT they say will not kill me, just makes life more challenging.
So far, which years have been the best years in your life? What have you done during them?
2010. New marriage, active hiking, kayaking, swimming, photography, bike riding. Traveled, honeymooned in Venice Italy. Weekend get aways.
What would you like to do if you didn’t have your condition?
Hike, dance, bike. Walk normal without AFOs. Travel more graciously.
If you had to describe your life in a sentence, what would it be?
Better than I ever dreamed it could be.
Finally, what advice would you give to a person in a similar situation?
Keep moving, do what you can whenever you can and know that it is enough.
