Adaptations
 

I've been a lurker to this forum about 6 weeks now, found so much help and useful info here!

My question is has anyone had to make adaptations to there home or rely on any special tools due to varying degrees of hand and arm weakness?

Any helpful hints would be greatly appreciated.

Thank you,
Rachel

Hi Rachel,

firstly Welcome, good to have you around.

I live in a aged unit, amongst 8 people over the age of 70!!! I'm only 38, but I love all the little things in the house that help me out. I have rails in the shower and toilet, and they are life savers. I also have a shower chair, which I use when I'm very tired.

Something thats not in the home but I do use, are walking poles, they really help me out to be steady as I walk.

Hope to see you around here some more
Kate

Hi Rachel, Although my legs are my big problem, my hands and arms are also weak. I have found that the smaller something is, the harder it is to hold. So hve someone wrap your favorite pen, your utensils and your hair brush with pipe insulation or even just a bunch of tape to make the handles larger.
Consider a battery operated tooth brush and shower chair as well.
I also keep some things on my counter (my coffee cup, my pills etc) so I dont have to reach in the cupboard all the time.
These little things save ALOT of energy. Eventually, you'll find yourself adapting to every situation.
I find that I only buy slip on shoes now and I even keep an old measuring cup to fill with water so I can pour into my dog's dish without bend much or , more impotantly, having to carry the dog dish.
Hope this gets you started on some ideas of your own

Hi, Rachel. Welcome to the forum.

Like these guys, I have a shower chair too. Ever since my MG crisis in 2005, I don't feel steady without one.

I have chairs in every room. ;) I sit while cooking, doing dishes, drying my hair, etc. When I can vacuum, I even sometimes sit while doing that. I keep paper plates, etc. on hand in case I'm too worn out to do meals or the cleaning afterwards. I have "picnic" food on hand in case I can't cook. I keep things in the freezer for those times I can't cook. It's amazing how much time we spend in the kitchen!

If you can, keeping your muscles as toned as possible does help. Like using an In-Stride bicycle or those rubber band things to strengthen arms. That way you can do little things, like early in the day, to keep your muscles stronger. If you ever get muscles in your back that cramp or spasm, it's good to see your neuro about physical therapy.

I have "cleared the decks" so the chance of my falling is reduced. No clutter helps. Though most MGers could trip on air or choke on spit.

Emotionally adapting may be the toughest thing. If you have trouble with that, it's good to see a psychologist or psychiatrist for additional coping skills or support.

I know you just asked about physically adapting but not being able to do things often leads to feeling down.

I keep my environment as cool as possible. Not cold but coolish. I run fans when I do cooking or anything that would heat my body up. If I have to do something physical, I try to do it when I'm well-rested or earlier in the day. A reacher-grabber tool sounds silly but it can really help. Bending over can kill the leg muscles.

I hope you can figure out what you can do to keep your arm muscles, and others, from getting too worn out. If you get worse, call your neuro.

Annie

Thank you for all the helpful suggestions.

I have been using a shower chair for about 2 1/2 months now, it seems like we just put it away and someone else needs it so out it comes. Love the walking pole idea! I'm back to walking daily when weather & leg muscles permit. I have a pair of giant kitchen tongs I use to grab some things that are higher up or lower down, I've also tied rope loops to my outdoor recycling bucket handles so I can DRAG them to the curb.

I have a wonderful PCP & neuro they are doing a great job of looking after all my medical and emotional needs. I would never get through this without the support & help of some great family and friends. I am truly blessed.

Thanks again,
Rachel

Yep I love my walking poles, I use them all the time. I will be going to the big Agricultural show up the the city later this month, and will take them, they will be the only way I will last the day. They not only help me walk but give me support and people tend to move out of your way,
here's a link to the ones I've got, but you can get a cheaper version.
Kate

http://www.leki.com/nordicWalking/index.php

You may want to talk to your PCP/Neuro about having an Occupational Therapist start working with you - they can come to your house and help you and your family figure out ways that you can modify your home/schedule so that you can get around more efficiently. OTs are great because they know lots of things that we may not even have thought of.

What a great idea Teresa, I forgot I had a OT come and visit early on. My physiotherepast also helps me out heaps.

Teresa, thanks for the suggestion, when I was in the hospital in June I had a brief visit with the OT & PT departments. But when they came to see me it was one of my best afternoons. I see my PCP in 2 weeks & my neuro at the end of October, my insurance co. turned down his request for the Musk antibody test so I have to see what he wants to do next. Love your Avatar, she is a cutie!!

Kate, I am going to look into the walking poles for sure, there are several sporting goods stores in my area, having such trouble with my legs the past several days walking for pleasure has been out of the question. Enjoy the agricultural show, what season are you in now? I know it is usually opposite ours.

Rachel

Hi Rachel,


Yep I wouldn't be without my poles, in my tiny town where I live people are always saying "are you off to the winter olympics in the skiiing!!" I love it.

Its spring, to dry we havn't had enough rain this winter, so hopefully it will rain all through spring!!!!! Yes I will enjoy the show, might even take my camera with me!!