Invisible disability - some tips for working with family

[Guest guest]

Hello all,

Ruth from Raleigh here.

I can understand your frustrations about CMT not always being a

visible disability. I have lived with CMT since childhood and have

watched a lot of family members deal with it. I thought I'd offer up

a few coping tips on how to deal with friends and family members who

might not " get it " just yet.

1. Remain positive in your conversations and requests for help with

family members. When asking for help, add how it will benefit them

because you will have more energy and strength for something else

that will benefit them. For example, when you need help cutting

vegetables, try asking " If you help me cut up some vegetables I can

make that potato salad you like so much. "

Be patient, it may take a while to train your family.

2. Try hard not to get angry if a family member " forgets " you can't

do something. I've been maried 24 years, and my husband

still " forgets " I need help climbing a flight of stairs it there is

no stair rail available. Sometimes I just wait at the bottom till he

realizes I'm not with him and he comes looking for me. Aggravating?

A little but he has so many good qualities it would be silly to get

angry over this one thing. I have 3 daughters and one of them has

gotten very good at " looking out for Mom. " I don't get mad at the

others, I'm simply glad that one of them does.

Tell them with a smile, hug or a kiss how much it means to you when

they do it spontaneously.

3. Regarding cooking the family meal, I have gotten fond of using a

crockpot. I can make a dinner in the morning when the house is quiet

and I'm not so tired, and then forget it the rest of the day.

When it is crazy and sressful later in the day, dinner is already

cooked.

4. Get the handicap tag for parking if you don't already have it. If

you have a diagnosis of CMT, you qualify. Period.

You don't have to use it everyday, but it sures comes in on those

days we know we need to conserve energy.

5. Understand that " conserving energy " is not being lazy. It is

simply picking and choosing which activities are most important to

you and your prescious store of energy. Again, calmly explain to

family members that by conserving energy on one task you can

concentrate on other tasks that will be more enjoyable for all.

Be a diplomat - explain to them how it works for the benefit of all,

not just yourself.

6. Research and use home devices that make tasks easier. For

example, get bottle/jar openeers, etc that don't stress your grip and

your hand strength. Get a cherry picker to help pick things up off

the floor. There are many, many devices that can help make everyday

tasks easier and mean you have to ask for help less often.

7. Pay the kids to help you with tasks. I have a small arts and

crafts business and am always running tubs of supplies up and down

the stairs. I pay the kids $1 for each trip they make up and down

the steps for me. They all want to buy a car (which they have to pay

for themselves) so now I am coming up with bigger jobs for them. If

they take payment in cash for a household chore outside their usual

ones, I pay them $6 per hour. If they bank the money instead to save

for their car, I bank $20 for that same hour. I am doing two things -

getting major household chores done, and encouraging them to save by

matching their efforts (my own version of a matching grant program IF

THEY SAVE the money instead of taking it in cash.) You can come up

with your own monetary formula but I wanted to pass on the basic

concept. I get help around the house, and they have a chance to

earn money and learn how to save it at the same time.

8. If you don't have AFOs and are having trouble walking, consider

getting an evaluation for them. I COULD NOT stay on my feet in a

normal day of family activity if I did not wear AFOs. I wear blue

jeans most of the time and they are hardly visible. I could not

function outside of the house without them.

These are just a few tips that work for me. Some may work for you.

I think the most critical thing for me is having a positive

attitude. What is the positive benefit for you AND your family

member to ask and to receive help???

LOL - Sometimes my husband will do stuff for me without asking if he

wants to have some " private time " later that night. We've trained

each other very well.

Ruth in Raleigh