banner collage of linda photos

TIPS

Bathing
If your hands are too weak to hold a full size bar of soap try Baby Dove which is pretty small or cut a regular bar of soap in half

Try the liquid soaps with a nylon pom-pom. The pom-pom can be hooked around you hand and once you get a lather going you can do your entire body without holding any soap.

You can lay a squeeze bottle of liquid soap down on its side and press it with the side or palm of our hand to get the liquid out.

Shampoo and liquid soap can be diluted if you aren't strong enough to get it out of the squeeze bottle in its concentrated form.

Boots and shoes
Here's an overshoe that will fit over extra-depth shoes and AFOs. The only catch is you have to have fingers strong enough to squeeze a quick release plastic buckle. You know the kind that they usually put on a fanny pack? This buckle could be quite easily replaced with Velcro by a shoemaker or repair person if your fingers are too weak to squeeze it.

Neos Overshoe makes a line of waterproof, lightweight overshoes and the Voyager style XS to XXL take sizes 3.5 to 15 for men, 5 - 16.5 for women and 12.5 to 11 for children. With sizes this varied chances are you'll find one that will take both your extra-depth shoe and your AFO and it will still be fairly easy to get on.
For further information go to www.overshoe.com or call 888-530-6367 and ask for John Siminger. Tell him you'd like a brochure featuring the Voyager.
You may also write to Neos Overshoe, P.O. Box 540, 823-B Ferry Road, Charlotte, VT 05445, U.S.A. or fax (802)425-5858.

Brushing your teeth
People who have CMT can find that their hands and wrists are not strong enough to hold a toothbrush. Many have found that an electric toothbrush does a quick and excellent job.

Try moving your head instead of your hand and wrist or move your whole arm to make the brush move on the teeth.

One man actually used elastic bands to hold his toothbrush or electric razor onto his hand so he wouldn't drop it in mid brush or shave.

Wind elastic bands around your toothbrush to make the handle nonslip or get a roll of foam and glue it to the brush to make the toothbrush handle bigger and easier to hold.

Search the internet for different devices to enable you to brush and floss with weak hands and wrists. There are many devices that will allow you to do this out there.

Clothing
If seams in your underwear or socks hurt, turn them inside out. No one will ever know.

Velcro can be put at the waist of men's and women's slacks and jeans. Leave a tab so you can grab it with both hands of you have no pinch to grip it to open it.

Loops can be put on fly zippers and if you keep your eyes peeled you can often find really attractive zipper pulls for jackets, etc.

A reader writes: I have been adapting my son's jeans, dress pants, etc. for years and he, too, refuses to have Velcro of any kind (too noisy). Buy a pair of waxed shoelaces - the dark, thin ones for men's dress shoes. Thread one end through the small hole in the zipper to form a loop large enough to slip one finger through. Knot it, and then because it is waxed, it will lie flat against the zipper itself. It stays in place, nothing shows, and it can be pulled up and down with ease.
One pair of shoelaces will make enough loops for several pairs of pants since you don't need a very large loop. I change all buttons on his pants to either snaps or slide hooks. I'm sure there are many others out there who have developed, through necessity, their own adaptations to clothes, shoes, and household equipment.

I have CMT and have problems grasping small items, e.g., zipper tabs. The solution I came up with was an ordinary key ring (comes in all sizes) attached to the tab. I put my finger through this ring and pull the zipper up or down. So simple!
Also, if you have trouble grasping a glass bottle or jar, wrap a rubber band or two around the item and your hand won't slip off.
Douglas Duguay, QC, Canada

Cold Hands and Feet
You can often find a person at a craft show who makes items like pillows filled with dry beans or grain that can be put in a microwave and heated or cooled in the freezer. Ask them if they can make you a muff for the car that you can put in the microwave and heated. If you wrap this in a small blanket or hand knit a case for it, the heat will last for up to four hours. You can also take apart a pillow filled with hulls or rice and remake it into a muff. Or start from scratch and make one yourself.

For terribly cold feet you have to know first that most people who have CMT cannot get their hands or feet warm without some outside source of heat. Just putting an extra blanket or an extra pair of socks on doesn't work.
You can work with your feet on a heating pad set at low.
Wear wool socks to keep the heat in once it gets in.
Put a heating pad at the bottom of the couch or near your favorite chair so you can put the soles of your feet on it for a while when you are trying to relax. It is almost impossible to relax when you are fighting the cold and it takes a lot of energy to fight the cold...it wears you out...but first try wool socks.

Cooking
Design your kitchen so you can slide things on the counter and don't have to pick them up.

Buy pots with two handles or get a separate handle that clips onto your pots so you can pick them up with two hands.

Get everything prepared BEFORE you start. That way you don't have to keep calling your husband from the other room or in front of the TV. Makes for harmony in the house.

Eating
Roz writes : In one simple word, when at a buffet ...ask. People aren't really sure you need help so just ask. There are usually waiters there to help. They will even take the plate to your table. Just don't be shy. That is better than being clumsy. Even your friends aren't sure what to do and would much rather you told them. No one minds. Even strangers will do it and forget in a second and everybody feels better.

Falling
Nightlight a must - Often I read about people with CMT falling or having a terrible time trying to walk from the bedroom to the bathroom at night.
Why not either install little night-lights along the way (they have battery run, cheap, stick-on ones if there are no plugs) or use a urinal in the bedroom and empty it in the morning.

Handling money
Agnes asks - How do you manage at a fast-food drive-through when they slap your change on top of the bills and you can barely hold it? Or when they don't give you time to take the food before they turn it loose?

Also how do you manage at buffet lines when you can't hold the plate for hand tremors and using a crutch and nowhere to set the plate to dip food? Any suggestions?

Becky M. answers: I have used a styrofoam cup for change to be placed in. As for time to get a good hold of your items, I say to them, "Wait till I get a good hold on it, please."

Denise H. answers - I carry a large billfold and it has a large zippered section for coins so I just unzip it and say "my hands don't work can you please just drop the coins in there and give me the bills." Then I lay down the bills and get them put away afterwards.

When in a restaurant my family is usually with me and if not I ask for help.

Linda here - When I go to the bank I ask them to give me my money in bills no bigger than a $20. In Canada we have one and two dollar coins so it means handling a lot more coinage.
I've sorted this problem out by always giving people a bill and asking them to put the change in the zippered change section of my wallet. A couple of times a month or more I empty the change into a jar. The last time I counted I had over $80!

Using this method, I don't handle coins and I effortlessly save a nice little piece of money for whatever I want...mainly Christmas presents this time around.

As for drive-throughs - ask them to count the change in front of you and then wrap it in a napkin and put it in the bag with the wrapped food. After you've eaten, you can take your time to put it away.

Holidays
Coping with Christmas - Leanne Kelly writes:
I think it would be interesting to read about how people deal with going to family and friends' houses that are not accessible.

Patty Watkins-Root answers: I second Leanne's suggestion! It seems that every Christmas my family picks a cabin to congregate at that has about 100 steps or puts me on the second floor when the bathroom is on the first. I think I will just stay home this year and they can come visit me if they want to get their presents!

Kathleen Smith writes in reply: Hold that thought and stick to it! When it got hard for my mom to go out, I had all the family gatherings at her house, but a different member was in charge of each event, including the meal and getting the house ready. Mom used so little of her house that just a few flowers, table decorations, and little dusting was enough to make it presentable. It was a win-win situation for everyone, as no one had to "clean house" and Mom didn't have to go anywhere and get worn out. Mom was able to present her best self, so none of my siblings realized how weak and frail she was. That was how she wanted it, since we didn't know why she was failing so fast and her doctors told her it was her own fault.

Joanne Wiklund answers Kathleen. We did the same thing with Mom! But when I read your post, I wanted to drop kick that doctor who said it was her "fault" she was failing so fast, and I don't even know what was wrong with her! How can they do that? I think hope is something every doctor should take a class in.

I know sometimes you have to be realistic, face the problem like a man, all that stuff, but a little hope is an important commodity when the stuff is hitting the fan!

Lisa Labelle from Quebec here: My parents live in a two storey farm house. The stairs, to me anyway, seem about as steep as Mount Everest! So, when I'm there, I stay away from liquids because I know that I have a terrible time getting up those stairs to the bathroom.
My mother has now applied for disability (her CMT has really come about in the last three years) and the stairs are getting hard for her, too, so eventually they will have to put a bathroom in downstairs.

Betsy Riggs here: At our church we have several kinds of occasions when we meet at other members' houses, and I always have to ask if there is a way I can get in. I don't even think about going to the bathroom. I've gone in through a lot of garages, and at one house I would call ahead and the host would meet me and push me up the stairs that I couldn't make on my own.

It's a shame, because you can't ask your friends to buy houses that are accessible, but you don't want to be cut off from the people you like most.

I've told my kids that if they move they have to find a place that I can get into. Only one has moved out so far, and she has moved into a completely accessible apartment building.

My best friend's husband wouldn't put a railing to their front door "because it didn't fit the style of the house." She has since divorced him, and I go in through the garage.

Lamar Stephenson here: I fully agree about holidays. Holidays were always spent with just my immediate core family. Now that they are gone, it is not the same. Most people I know are tied up in their own family celebrations on holidays. I usually tried to stay awake all night before one and sleep all day. In the last couple of years I have made some dear friends that I spend some holidays with and that has been great for me.

I loved to decorate everything for Christmas for years, but as my CMT progressed it became harder and harder. Many things such as the lights for a 50 foot outdoor tree and more than a few thousand outdoor lights on the house have been packed for years. Let's face it, my ladder and roof days are history! I am finding a new joy in the holidays, but I have to hunt for it. It is not easy, but gets easier every year.

This is Jennifer Selover: I did want to say to Lamar that I understand his feelings. For the last two years my CMT has been so bad I could not have cared less about Christmas stuff (except for the birth of Christ aspect). My 20-year-old daughter, bless her heart, tries to make Christmas in our house like it used to be. Without her I don't know what I would do. I love decorating for the holidays which depresses me even more knowing I can't do it any more.

My suggestion to you is to run a small ad for a teenager to help decorate your house, especially your outside lights. You'll be amazed how much better you'll feel just to sit back at night, watch TV, and smile as you gaze on your lighted Christmas tree and house. Many kids need the money for buying gifts. You might also check with your local churches. Ask for the youth pastor, he may have a youth group that would do it for free.

The other thing I did last year, which I swore I never would, was I bought a lighted fake tree. It takes minutes to put up, is 7' tall and has 500 small twinkling lights. It's beautiful! Even my daughter, who was totally against the idea, has come around and loves the beauty and ease of the tree. As for the aroma, I safely burn wonderful gel Christmas candles and the holiday joy is coming back even with my small family. I know you are alone Lamar, but if you loved to decorate for the holidays, treat yourself to your wonderful memories as you open each box and find all your favorite treasures.

Brad Thomas writes: Because of CMT we may find it easier to overextend ourselves. Don't forget, as we stress ourselves physically we also stress ourselves emotionally, psychologically, and frequently spiritually. For most people, stress behavior is significantly different from normal behavior. Knowing how you respond, under stress, is very important. For people with CMT, stress management is very important. Sometimes we are stressed without really knowing what is happening. A need to cry may be the first and only sign of stress. As you have indicated, I believe that the best solution is to get away and rest.

When I begin to feel stressed "I take a nap!"

Linda here - Good advice anytime.


Miscellaneous
Handy paper towel roll
One helpful tip that I use, which I don't think I've ever seen published, is having a roll of paper towel on the car floor while a passenger for long distances.

I can roll it about and flex the muscles in my feet and legs. Without that movement I tend to get plantar fasciitis and go lurching out of the car with sore feet and balance problems.
A roll of paper towel wrapped in sturdy plastic will last quite a while, but I actually sewed a hand towel into a cover with a drawstring at one end, which is more comfortable. It also proved handy to have a roll of towels in the car on more than one occasion.
Cherrie Gilliland ON, Canada

Mobility
Leaving electric scooters out in winter
A reader asks if it is safe to leave an electric scooter with its batteries in her van all winter. An answer comes from Darlene Weston whose son is a battery expert: "Larry says the scooter may be parked anywhere you want as long as the batteries are kept charged up. He said you should remember that you don't bring your car or van into the house in the winter and it's the same principle with the scooter batteries. And what about dry cell batteries? He laughed ..."if you're worried about them freezing, then they weren't dry cell were they?" Then he assured me they were the same principle. He said he had actually watched them freeze an acid battery in ice totally, leave it and come back and it was fine as long as it was charged. He said not to try that if it wasn't charged though. The secret is keeping them charged up.

Steno chair - if you want to save yourself tripping and standing a lot you can buy a simple steno chair with good casters that will let you roll around the house and especially the kitchen. If it is adjusted to the perfect height for you, you can use your legs to push yourself especially on tile and linoleum (it usually only takes one leg).