I've tried to keep doing the things that I love
by Jana Ragogna

For several years now I have enjoyed receiving the CMT Newsletter so that I can be more informed about this disease. Six years ago, when I had just turned 33, I was diagnosed with CMT. I felt numb but finally someone had put a name to the problems I was having with my lack of balance and flexibility. My husband, two children and I had just moved into our new two-storey home. It's not always easy on the stairs as I have developed a drop foot and my legs don't always do what I tell them to do (like move) but I don't let it get me down for long. There is too much I want to do.

I was so pleased to hear that you (Linda) had received the Order of Ontario presented by Lt.-Gov. Jackman. I have a special interest in this because my husband has been an aide-de-camp for the lieutenant-governor since John Black Aird was in office.

Before I started having problems, I would occasionally act as a tea hostess when my husband was on duty. We have met some very interesting people through the different functions. My most memorable event was meeting Prime Minister and Mrs. Mulroney and the Prime Minister of Italy at a small private reception last year. I went out and bought a pair of flat, very comfortable shoes that were not very noticeable and I hugged the railing as much as I could that evening. My husband has been involved in the military reserves besides his full-time job. Because of his involvement, I've been presented to Prince Charles (1979), and last year I watched very proudly as my husband escorted Prince Charles as he inspected the troops when he first landed in Toronto.

I have tried to keep doing the things I love but not all have worked out. I worked in real estate for a few years, but when I started having trouble on the stairs or putting my shoes on after going through a house, I decided that was enough. I then supply taught the elementary grades for several years. Again, CMT was catching up to me. I was finding it more and more frustrating writing on the board and keeping up with the children. During the last years, I have developed a love for decorating flower arranging and crafts. I have rag rolled and stencilled throughout the house with impressive results. I have learned how to paint T-shirts when my hand is feeling strong.

I wanted to start my own business that I could be productive in and not have to depend on others to make an income. I also wanted to be able to stay at home for my children. Drew is in Grade 4 and loves baseball and judo. He is two months into it and he has just received his yellow belt. And Kate is in Grade 2 and has just started gymnastics. Both of them are healthy and active with no signs of CMT. Hopefully, that's the way they will stay!

Anyway, I did start a business that I felt I could continue even with the progressive effects of CMT...and hope to start marketing in the next few months.