Re: Any Quality of Life Enhancements?

[Guest guest]

Hi Wheels,

I'm about 40+ years since diagnosis and have tried lots for QoL. Horsebackriding

and swimming have been my 2 greatest joys, even to this day (not so many

opportunities to ride anymore) but I absolutely * Have to * get in the pool

In 1998 I moved from a 2 story house to a one story house. Just as much walking

and moving around, but I really like having everything on one level (and it's

cooler in the summer, built on a slab foundation, so during an earthquake the

house doesn't shake, so far, lol)

Everyday I'm in the pool I do a particular set of exercises for balance, besides

the rest of my circuit.

Like you I have nightlights all around, halls and baths, plus low-watt ceiling

lights in the halls with switches conveinently placed.

The house came with one grab bar inside the shower, I added another that doubles

as a towel rack, and also added one in the guest bathroom. (I feel ALL showers

for everyone, everywhere, should have a grab bar) I also have bath mats that

have suction on the bottom, so no slipping.

I found a really cool cordless, lightweight hedge trimmer that is so much fun,

and cuts my time in 1/2 (no pun intended!) I also bought a 6 lb. Oreck vaccum

that is a breeze to use.

In the last 10 years I changed my whole diet, from too high calorie to low

calorie. I quit drinking caffeniated beverages, sugary juices, etc. It's been a

slow process, but now I'm eating pretty much macrobiotic, I feel full, don't

need to 'snack' and it seems to have increased my energy levels. And I lost

about 40 lbs, putting my BMI at the low end of the range for my height. (I do

allow myself 'a day or two or three off' like if I am traveling or dining out).

Gretchen

[Guest guest]

Hi Wheels,

 

I've done many of the same things you have this year.  I had a second handrail

installed on the staircase a couple of months ago and it was well worth the

cost.  After a couple of close calls, I knew that a big fall was just a matter

of time, but with the second rail I feel much more secure. 

 

My hubby also installed the gripbars near the toilet.  I had gotten to the

point where I was struggling so much I had to started leaving the door open so I

could pull myself up with the door handle.  Hubby told me that was very

dangerous as the handle could come apart, so he put up the bars.  It's much

easier and safer.  I had him install them as upright as possible, since it's

easier to grab with my fingers when my hand is straight up and down.  When the

wrist is bent, the grip and fingers are weaker.

 

We also put lights throughout the house.  My husband got CFL bulbs, which use

very little energy, just pennies a month.  Many stores (like Costco) have them

at a 75-90% discount, as a result of Federal funding, so we replaced all the

bulbs in the house.

 

As for other things...my husband opens all the water bottles in the refrig. 

Seems in the last year or so, the water manufacturers have started making the

plastic bottles so thin that I crack them trying to get the top off. 

Struggle with shampoo bottles, etc., so  I get help to opening them and then

leave them open.

 

Also, we get small cartons of things.  Can't handle big jugs of liquids, for

example.  It's more expensive some times to get the smaller containers, but

worth the cost for independence and injury reduction.

 

I have lots of kitchen tools that are ergo, easy-grip, etc.  And I like using

hefty pens with easy rolling ink.  I don't have them yet, but know there are

lots of other tools that can help with such things as buttoning a shirt, tying

shoes, pulling up a zipper, etc.

 

For the computer, I sit back in a reclining chair and have the laptop on a

laptop caddy and the keyboard on my lap.  It's so much easier for me than

trying to sit at a chair/desk, which had become incredibly painful. 

 

I could go on...but I'll finish by mentioning my scooter.  It's so wonderful to

go in a store with the scooter.  Even if it's a short walk for a couple of

things, standing in line is killer.  The scooter spares my joints tremendous

pain.  My parents saw how useful it was for me, so they both decided to get one

and their happy they did.  Their dogs enjoy it too.  They love to be taken for

a walk with the scooters.  They walk as far as they can and then hitch a ride

back on the scooter with mom and dad.  It's very cute.

 

 

From: cdwheels3@... <cdwheels3@...>

Subject: Any Quality of Life Enhancements?

Date: Tuesday, November 17, 2009, 12:20 PM

 

Hello -

This is Wheels, again. I am fast approaching my 1 years anniversary of being

diagnosed with CMT disease. I am currently recovering (fairly well) from surgery

from a fall where I fractured my wrist in a couple of places. My CMT has been

moving quite quickly over the last 6 years. Balance is a real challenge.

I am very intereted in learning what others are doing, have done, or planned on

doing to improve on the QoL.

For example, when I fell I did so because I came up from my basement to an unlit

main floor of my home where all of the lights were out. I reached for a kitchen

counter and missed.

Here are some of things I've done in 2009:

Home (to and around):

1. Night lights in the living area and frequented dark places 24x7

2. Put handrails on both sides of all stairways (Wow! Has made a big

difference.. and they are loved by the grandkids)

3. Waterpic extendable showerheads and grasping handles in all bathrooms

4. Found a leaf sweeper (Agri-Fab) which allows me to gather leaves in the yard

like pushing a shopping cart

5. Got the Worx blower, vac, and mulcher all in one to handle what the sweeper

gathers

6. Utilize WII Sports and Fit daily for a daily exercise routine

I'd be interested in learning what others have done, or planning.

Thanks.

[Guest guest]

I talked to an older gentleman, who had been living with CMT for many years. One

of his suggestions was to practice falling. I found this very interesting. Why

not? Stunt men do it. It is how they learn to fall without getting hurt. He used

a mattress and fell onto it. He worked on the skill for a year and now swears

that he can fall and not hurt himself.

I am working on balance in PT. I stand with a rail on either side on a pillow or

foam cushion. First with feet apart - eyes open then eyes closed. Feet together

- eyes open and closed. Feet one in front of the other etc.. It is very

difficult. No way I could do it without the bars at my side. Perhaps this could

be done at home as long as you had something on either side of you to grab and

keep from falling.

I am also grabbing marbles with my feet and putting them in a bucket. So hard!

This can be done standing or sitting.

As far as adaptive equipment - I have my husband. LOL. He opens things for me,

carries things, etc.

I have gotten a scooter and a cart for carrying things myself and this grabby

thing that makes it easier to open jars in the kitchen.