Sharing and Caring

Chores can be stressful

Mary Archer of Birmingham, England sparked an idea we thought we'd pass on to you. Sometimes going to the doctor, the dentist or even just having your hair done can actually wipe you out for the day. All of these chores can be stressful and we thought we'd mention that just about everywhere we can think of there are services that will come to you. Doctors don't always mention it nor do dentists but there are doctors and dentists out there who will come to you. Ask the local nurses registry if you can't locate one near you. You can also get your shopping done, hair cut and set and nails done, a massage, groceries bought, car serviced, pet groomed and dry cleaning picked up and clothing altered, all by services who come to you. If all the chores you do simply wear you out, try one service at a time and then build up a roster of those who will help you survive the week without wearing yourself to the nub. And remember, think smart, use the Yellow Pages to find these services. If all else fails use an ad in the newspaper but check the people who answer thoroughly through the Better Business Bureau. You don't want to be taken. – April 1989

The HALT theory

We can't blame our CMT for everything. Sometimes fatigue is your body's natural way of telling you to pay attention to something.

I think this is so true, and in my humble opinion, depression, panic, anxiety and fatigue are some of the many ways our body has of giving us a signal that we need to do something different because it is stressed. The different thing could be get more rest, say no more often, assert yourself more, or change something such as a behavior or attitude if you cannot change the circumstances.

We with CMT cannot change that, so the thing we can change is how we view it and ourselves. I feel that we are dealing with loss all the time and that just naturally brings on depression at times.

Has anyone heard of the HALT theory? It is used in AA to keep people sober. It means don't let yourself get too Hungry, Angry, Lonely or Tired. We can probably never have the energy of people without CMT, but we can keep ourselves from totally crashing. I think that if you can look on depression as a signal from your body to change something it is easier to get help. I know that our pain can tire us out and, like someone said, create a cycle that is hard to break. Hang in there dear people, we can fight much better if we fight together! -- Rosalie

Stress and CMT

I was diagnosed as having Charcot-Marie-Tooth disease after going through extensive testing just six months ago by a neurologist located in Santa Barbara, CA. I inherited the disease from my father who has had it since he was a young boy and he inherited it from his mother.

I must admit that the news came as a shock to me at first, but then the more I thought about it, the more it explained why I was having the symptoms I was, and then I was so relieved to know for sure and to have all doubt removed. I would no longer be playing guessing games by wondering what was happening to me because I know for sure now.

There is a real weakness in my legs and lower extremities. When I stand, my legs are very wobbly, then my hind quarters tend to drop down as my knees give in.

At night, when I go to bed, I notice a jerking sensation that goes through me that comes and goes every few seconds. Most of the time, I'm not even aware that it's happening until my husband said that I almost kicked him out of bed, so it's an automatic response I'm not even aware of.

I am 26 years old now and I am legally blind. My sight dropped 100 points in just nine months time.

One evening my husband and I were on our way home and we were caught in rush hour traffic. As I sat there, I could see cars and trucks closing in around us and I was terrified of being involved in an accident. I am a very nervous passenger in the car and I don't relax easily. As a result, my right hand and arm went numb and stayed that way for two weeks.

I feel strongly that the disease drastically worsens if a person is under stressful circumstances. Rebecca Zumwalt, U.S.A.

It's about stress! (August 1995)

The CMT Newsletter has helped both my doctor and me get some answers to a lot of unexplained problems and I have an appointment with the MDA here in Utah to confirm what we already feel very sure is my problem. I searched out my mother's family last year as she died when I was only two weeks old and I never knew her side of my family. So, until Last May I didn't know she had CMT. One of my new cousins gave me your address and here I am.

I am 53 years old and the mother of three sons. Some of my symptoms are: falling over air; high arches; hammer toes; poor co-ordination and balance; muscle spasms all over feet, legs, hands, back; tingling; shooting pain in hands, feet, legs, arms; loss of strength in my hands. I didn't walk till I was two years old. I also have osteoarthritis and torn cartilage in both knees.

I have had a lot of these problems beginning in my early 20s; then they seemed to subside till about five or six years ago when I had more stress than I ever had before, some of which was job related, some with my children. My son announced he was gay, as if I didn't already know, a mother knows. Then my worst fear came; he was diagnosed HIV and tried to commit suicide many times and almost made it. After many years, he has accepted his HIV but I still have problems and fear that phone call that we might get. We have already had many scary events with the HIV.

My dad died and one of my other sons got divorced and I lost my two grandchildren. Then I got hurt on my extremely stressful job. Then my other son (twin of the one who is gay and HIV) had a heart attack and he divorced. His ex-wife called one day to say she was HIV and got it from her husband who used to be an IV drug user. My son, with my help, already had custody of their son. I could go on and on.

In the meantime, I had hurt my knees and I had started a lot of these CMT symptoms before this. To make a way-too-long story shorter, my doctor and my orthopedic doctor and myself believe I do have CMT. The more stress I am under the worse I feel, but at least now, I think I know what to call it…CMT.

CMT International has been a real eye opener for me. One of my sons has some symptoms as well. Georgia May Bartlett, U.S.A.

Stress no fun (February 1992)

I am writing to you about what a major role stress plays in our lives. Stress certainly affects everyone but for those of us with CMT stress can be especially hard and occur more frequently. I sometimes find that people expect me to be able to keep pace with those who have no physical difficulties, and yet there are others who feel that because I have difficulty walking I must not be able to do anything including thinking or having an opinion. This is one form of stress in itself. Sometimes I do need to slow down but I'm certainly not brain dead. As a matter of fact I graduated from high school with honors, went on to art school, worked as a freelance artist for a while, married, had a child who has severe CMT with breathing problems, and yet I've taken care of her alone since my husband died 10 years ago.

There is also another kind of stress we deal with. I call it "mechanical stress." When my daughter's wheelchair breaks down, we usually have to wait days for the repairman to come, Just recently we went three days without brakes on the chair which is a very dangerous situation. When we had a hurricane this past August, we lost our lights for 10 hours. My daughter uses an electric oxygen concentrator but we have a tank of oxygen as an emergency backup. She can go without oxygen for hours at a time but this night she needed it and wouldn't you know the backup tank wouldn't work. I called the respiratory therapist on call and he was so far away that he couldn't bring us a new tank of oxygen. I ended up tracking down a tank from our local ambulance company. It was very frightening watching her struggle for air.

In school we have some teachers who are fair and understanding and then there are some who won't even try to understand my daughter's difficulties. She has even been embarrassed in front of the class by these teachers. Despite all of her physical problems my daughter is an honor student and a typical teenager.

Somehow we seem to survive the stress. Maybe we are better human beings for going through so much. I don't know. I do know that this is the only life that we have and we have to make the best of it. Having CMT makes me look at the world through different eyes than most people but I like to think that I'm stronger in many ways due to the challenges that CMT has brought to my life. Kathy Madden, U.S.A.