We know that balance, an unsteady gait and loss of sensation and movement in the hands and feet can be part of CMT no matter what age we are BUT when we are gaining in yers we have to look at aging and CMT together. As we get older, we learn to recognize the effects aging has on us. We have to combine the effects of aging and CMT to really see how we are going to be in our older years.

A lack of good balance can be partially compensated for by the muscles in our feet, legs, back and even our neck,. We can move our arms to help us balance, and seeing well also helps us send the right messages to the brain to balance correctly. The way we hear sound and our auditory nerves also work to help us balance. Something called proprioception or the body’s ability to know where it is in space also helps us stay upright.

As we age, our muscles are less able to help us balance, there just isn’t enough there to do what they used to, our eyesight isn’t as keen, our hearing isn’t as sharp, and our entire CMT affected nervous system just doesn’t function as well.

It may have been fine for your husband to stand up while he got dressed when he was a little younger but he is going to have to sit down to put on his pants and his shirts from now on. It only makes sense. Some men, believe it or not, don’t know how to put on their pants unless they are standing up. I can’t help laughing at this; women have been doing it forever and it works just fine. The world won’t end if he has to sit down to pull on his trousers and it certainly doesn’t make him less of a man.

If he falls over when he tries to put something like a sweat shirt on over his head it is because he has to use his eyes for balance, to tell his body where it is, and when his line of vision is cut off he can’t see to tell his brain how to move his body to maintain his balance, so he falls over. He’ll have to sit down to put anything on over his head too or brace his behind up against a wall with his legs spread like a tripod and bend a bit, close his eyes, and pop the sweat shirt over his head. This way he shouldn’t fall over.

A very easy way to get dressed is to sit on a chair (preferably an armless chair) and have your clothes within easy reaching distance around you. Put on underwear first leaving the bottoms around your knees and your tops around your ribs. Most women can do up a bra in the front and turn it around if their hands or wrists are too weak to do it up backwards. Next, put on your shirt or blouse, your socks, your pants or slacks or skirt and then your shoes, doing them up. Then stand up and pull the tops all down to your waist and the bottoms all up to cover them and do up the waistband (Velcro on the waistband makes this very easy) and the zipper (a string or cord looped through the zipper or a button hook used in the eye of the zipper pull will make this easy), then put on your belt or have it already in the loops when you pull it on and, voila! you are dressed. A belt left in trousers that are hung upside down in a closet adds weight and helps to pull the crease back into the pant legs.

Remember that most of us have trouble buttoning anything whether we are old or young. If you are older when you discover that your fingers aren’t working, consider yourself fortunate; you have had many years of function that a lot of us haven’t.

Old-fashioned buttonhooks are really good for doing up buttons and they can be bought in most stores that sell devices for daily living. Or, you can sew the button on the front of the garment and Velcro circles on the back of the area where the button would have done up. When you touch the Velcro together it looks as though you have done up the shirt but you haven’t. Simple and fast. Also some of you may want to have your shirt sewn up the front. There are several seams up the front of a shirt or blouse and you can follow one of those seams so it will look very much as though you have done the shirt up yourself. Make sure the shirt is ironed perfectly, do it up and then sew it up… permanently. Leave the top two buttons open so you can pop it over your head to get it off and on. This also does away with the gap some women experience when they use their arms to lift their bodies out of a chair or up or down steps. A blouse that is sewn together cannot gape open showing camisole, slip or bra.
Consider doing away with dresses that do up down the back if you have a problem doing them up and jewelry that is hard to do up. If you have someone to help you, fine. If you don’t, why frustrate yourself?

Walking usually deteriorates when we grow older. How many very old people do you know who walk with a spring in their step? Not many, I’ll bet. Well most of us didn’t have the spring in the beginning! Balance problems and muscles atrophying mean we can’t expect to walk the way we always have. I used to kid my 87-year-old mother-in-law that she walked sideways more than she did forwards. She’d laugh because she knew that’s just the way it was, and she didn’t have CMT. Many of us use wheelchairs or scooters in our 30s and 40s, so to have to use a walker or a scooter in your 60s or 70s isn’t out of the ordinary and it sure beats falling and breaking leg or foot bones, kneecaps or hips.

Handwriting is going to go down the drain in most instances, too. As the muscles in our hands atrophy we no longer have the control we once had, and let’s face it, beautiful handwriting is the desire to control the muscles to form what looks pleasing to us. I can always tell if someone has the CMT tremor, their handwriting reflects it, or if their hands are weak, the signature or writing is weak, and I can tell if you are having trouble holding the pen and even if you are unhappy. The letter or signature reflects it.

Many, many of us have learned to use word processors or small personal computers and, once the initial fear has worn off, find we have a new tool that opens up the world for us. It is nice to have your thoughts understood clearly by others and this is something that a lot of us have difficulty with because our handwriting tends to get worse with time.

There are no exercises that can be done as using a hand over and over again to do an exercise will only tire the nerves serving the muscles and the nerves can stop firing the muscles forever. There are no foot exercises to improve balance as you get older because the same thing happens there. What you can do as you get older is try ankle/foot orthoses (lightweight plastic bracing that goes down the back of the calf and under the foot); they’ve been known to help balance. Above all, keep yourself flexible. Stretching exercises will help this. When you stiffen up you tend to move unnaturally and, in doing so, can fall much more easily. Stay flexible and thin if possible; that’s about it. Why thin? Because it is easier to move if you are thin; you can bend more easily and it is easier to get dressed, lift yourself, and walk and move in general if you are carrying less body weight. Ever watch a fat lady try to cross her legs? Enough said!

1) ACCEPT IT— As much as it kills you and you feel as though your heart is breaking, you have to be brave. Age happens to all of us if we are lucky. Try to gracefully accept the fact that you or your loved one isn’t always going to be the way they were. CMT takes its toll and muscles and nerves deteriorate. Combine this with normal aging and the stresses and wear and tear of living, and your body shows signs of it all, just as your hair goes white or grey and your laugh lines become permanent fixtures.

2) ADAPT – Look around you for ways to compensate for what you have lost. If you don’t like white hair, you can colour it; if your eyesight is failing, wear glasses; if your balance is bad, you sit to do things and use a walker or scooter; if your fingers don’t work, you find a good buttonhook that you can mange and use that; and in general, you adapt and compensate because you must. There is no sense acting helpless; it only puts the burden on those who love you. Get in there and use your brain. All good inventions have come from necessity and you need something that will help you. I’ve seen all kinds of neat inventions worked out by people who have CMT to help them better cope. Zipper pullers, oven rack pullers, long shoehorns with wraparound handles so they can be more easily held, skate hooks on boots because we can’t pinch laces to feed them through eyelets, Velcro everywhere, and even homemade ankle-foot orthoses. You know no one can usually tell that we have anything wrong because our inventions and improvisations are all done so darn well.

3) DON’T SET YOURSELF UP TO FAIL – Use common sense – Work things out. If you know you can’t get those buttons open don’t buy the shirt or buy the shirt and the Velcro at the same time and have someone who can sew lined up so the whole thing isn’t a big deal, it just happens when you buy shirts; the same goes for pants and skirts.
If you can tell that you are going to overbalance, sit down right away; don’t risk a fall and don’t risk looking like you can’t cope in the eyes of others. They already know you have trouble doing things but it helps if you don’t keep on making the same errors. Once or twice is cute or funny but an accumulation can lead to, “He doesn’t seem to understand that if he sits down to put on his pants he won’t fall over.” This is no longer a problem with balance and logistic but one of mind and aging and no one wants to be thought of as “losing it” mentally when it only takes a little thinking ahead to let people know we are still very much on the ball.

4) BE PATIENT with yourself. Slowly you lose the ability to do something, and if you haven’t accepted it and don’t adapt, you can become very impatient with yourself. Impatience leads to frustration and, in women, that usually leads to tears or throwing something and, in men, anger. SLOW DOWN, give yourself time to figure how to do things differently before you holler for help or get angry with yourself. Plan a line of attack BEFORE you try to get on that fancy blouse or knee-high boot that flops over sideways as soon as you get your foot into it. Give yourself the gift of time by not planning too many things for the day, by not pressuring yourself to perform too quickly in anything you do. Call you own shots.

Don’t be pressured, not by doctors, by loved ones, by anyone. I remember once seeing 11 doctors in two months. The result was something I call doctor burnout but it took that to teach me that I can always change a doctor’s appointment for another time if a referring physician makes an appointment for me and it’s too close to breakfast, if I can’t move that fast, I fit bumps into something else. To make a 9 a.m. appointment I have to get up at 6:30 a.m. and I’m exhausted for the day. Take control and you’ll not be setting yourself up for failure, frustration, and perhaps even an accident.

Be patient with those who help you, too. Sometimes they don’t know how things should be done any better than you do. Remember the old joke about Ginger Rogers being smarter than Fred Astaire? Well, she has to be because she had to do everything he did but on high heels and backwards! If your caregivers are helping you, they are doing everything backwards from the way they would do it for themselves and trying to preserve your dignity at the same time, which in itself is something of a balancing act.

People who yell, curse and swear, throw things, or cry are also people who obviously haven’t learned to cope. If you do any of these things fairly regularly, take a long hard look at yourself and give yourself some real quality time to start sorting out your adaptation problems. You’ll be glad you did and so will those around you who feel your every emotion.

5) LEARN TO LAUGH – If you can laugh about the little things that really bug the hell out of you, you’ve got one of the biggest battles in life won. The laughter makes the chores easier and the person who helps you will do you up or pull up your pants or whatever with a smile instead of a frown, especially if you have one on your face as well. You both know that it isn’t the way you want things to be but it is REALITY and you do need help.

So, to sum it all up, learn to accept the fact that you need a little help and that Life = Stress, that’s the nature of the beast; Life + CMT = Stress x 2 for many of us, and a LONG Life + CMT = Stress squared. Learn to work around your problems and learn to adapt various things to serve your needs. Don’t set yourself up to fail by blindly trying things that you probably know you can’t do but don’t take the mental time to really figure out. Learn to be patient with yourself and your caregivers and learn to laugh at yourself and your problems. Considering the alternative to growing old, you aren’t really so badly off. CMT doesn’t kill; it just slows us down. Those of us with severe breathing problems have more to worry about than those who can’t do up buttons, so maybe counting a few blessings wouldn’t hurt, either. And even if your breathing is affected you have each day to celebrate because you made it through the night and, by gar, you are alive!

Try to live each day to the fullest, say something nice to someone every day, and when you ask for help try to say please and thank you every time. It lets the helper know that you care enough to remember the little things. I love you, if it’s appropriate, wouldn’t hurt once in a while either. With patience, care and love for yourself and the person you are helping, the two of you can do almost anything.