I'm thinking of having another one!
By Debbie Fix, U.S.A.

In my mid 20s, I started having problems walking. I've seen many doctors over the past 10 or so years. It was very upsetting and discouraging. I've been wearing AFO leg braces since 1987. They help me so much. If anybody needs a wonderful brace doctors on the North Shore in Massachusetts let me know. He will do just about anything for his patients. I just love him; he has a heart of gold. (Kenneth Cornell, Cornell Orthotics and Prosthetics Inc., Salem Massachusetts)C.

Unlike some other CMT people, I definitely inherited the disease. My great-grandfather, grandfather, mother, aunts, uncle, some of my cousins and some of their children do have CMT. I have a brother who doesn't have it. Some of the family members have it worse than others.

I took Motrin a few years ago, before I got pregnant, and it did really seem to help, but when I got pregnant, I had to stop taking it. I took Tylenol for the pain. After I had my son, I just never started taking it again and I'm doing alright. I'll take some Tylenol if I hurt. Some days I'm worse than others. I just take one day at a time. It could be a lot worse. I try to think positive.

My hands started getting affected a could years ago. They are numb. I used to feel bad seeing my mom fumbling through her change purse trying to get some change out and now it's me. My writing isn't very good. It's difficult doing up buttons, putting on jewelry, getting change out of my wallet. These are some things that I can do and really enjoy doing them: ceramics, skiing, computer keyboards (typing), canoeing, camping, swimming, machine sewing, cooking and some crafts.

My CMT isn't that bad. I work full-time. I did change jobs so I'm not constantly on my feet. I used to work in the shipping room and now I work, in the office of a biotech company. Before this job, I used to waitress. That was really difficult. I didn't wear braces at that time and I have a feeling that waitressing made it worse.

I've been married for seven years to a wonderful man, Bill. He is the best husband and father. We tried to have a baby for about two years and it finally happened. I gave birth to a healthy big baby boy on June 26, 1991. My pregnancy wasn't bad. I worked up until my eighth month. I had a difficult time putting on my braces and my feet turned blue at the end due to my circulation problems. I was a week late. I was worried about the pushing in labour but I never had to. My baby never engaged into the birth canal. I was in labour for about eight hours when my doctors told me that I would be having a cesarean operation. I was very nervous but all went well. Taylor was born at 11:56 p.m. weighing 8 lbs. 11 ozs.

After the surgery, it was extremely difficult for me. I couldn't walk without the use of a walker for about six days. I was terrified leaving the hospital with a newborn baby and not being able to walk. My husband was so good with the baby. He did it all. He is just a wonderful guy. I couldn't have had the baby if he hadn't helped me though it all. The labour part wasn't as bad as I thought it would be.

We're not sure if our son has CMT. We keep praying that he doesn't, but if he does we'll deal with it. As parents, we will do everything we can to help him.

My CMT didn't really progress until I was in my 20s. I was always slow and clumsy growing up and wasn't very good in gym. I had a difficult time with shoes. I have very high arched feet. Now I wear Reebok sneakers. The soft leather doesn't hurt my feet and the braces fit in good. Also, they come in so many colors. I wear support hose every day; they really help. They are hot in the summer, though.

It is difficult for Bill and me. He works 3:30 to midnight and takes care of our two-year-old son. I work 8 a.m. to 4 p.m. We live for the weekends, but it's worth it. We did have our son in day-care but he has ear problems and was getting very sick, so we decided to work opposite hours so he would get better, and it really has made a big difference in his health.

If anyone is thinking of having children, please have one. It's the best and most wonderful part of my life. But it is lots and lots of work. I used to think I was tired before I had my son; now I really know what tired is. I'm even thinking about having another one. It took us a while to get pregnant with Taylor, so if it's going to happen, it had better be soon. I'm 34 and we don't want too many years between the children. Sometimes, I don't know how I will do it but I'll just have to. My CMT didn't get any worse being pregnant. I just had to stay in bed the last month and rest. Some women have to stay in bed their entire pregnancy, so I guess I did well.