Alice-Ann

[Alice-Ann]

Hi! I am 80 yrs. old widow living in Dallas, Texas, that has never acted her age. I Got my CMT from my Mother that presented itself when I was about 70. I take Gabapentin and Cymbalta for leg neuropathy. Have 2 new knees. Take Lazics twice daily for foot and leg swelling. Wear tying shoes as have no feeling in my feet or legs and walk out of any shoes not tightly tied. My hearing has been greatly affected and I wear hearing aids on both ears. My immune system is low from ovarian cancer 40 years ago with chemo and radiation given. Therefore; with low immune system, contracted the itchy hives over 100% of my body called (GROVE'S DISEASE). This disease can come and go at will, is not catching to anyone else and there is no cure. It's terrible. My eyes, so far are 20/20. I need a walker most of the time to walk. I have a nurse (thru long term care Insurance) that comes over every day from 9-3 to help me bathe and dress, cook, clean & go to the store. Can't walk but a short block at a time. There is noticeable weakness my arms and hands. BUT, my attitude is great and I go out with friends several times a week. Don't be depressed. Try to accomplish something positive in the time we have left. The doctors know almost NOTHING about CMT. WE MUST TEACH THEM THROUGH EDUCATING THEM BY STICKING TOGETHER AND SHOWING THEM WHAT IS WORKING FOR US BY EXAMPLE. God Bless Us All!!!! We are all in this together so let's help one another to be strong and face it!!

[spabbygirl]

Hi Alice-Ann, what a horrible string of conditions you have, such a lot to bear. Great that you have a nurse for that long though, I don't know anyone in the uk with that. Good to hear you've such a positive attitude, sounds like you have a great time!! We do have to keep educating the medical profession don't we?

[Alice-Ann in reply to spabbygirl]

Yes, I feel very blessed to have my nurse 6 hours a day. I bought Long Term Care Insurance a long time ago,, before I was diagnosed with CMT at age 65. I lived in London for 6 years when I was in my teens, but don't remember if it is possible to buy insurance for nurses. My Mother had nurses at that time, but wasn't yet diagnosed with CMT. I would suggest that you look into this, if possible! I helped a friend sell insurance at 65 and she made me buy this kind. It was very expensive at the time depending how old you are when you buy it, but it is now paying me tons more than I paid into it. It lasts until I die! Good luck.

Alice-Ann