Polymyositis & Dermatomyositis Support Group

Polymyositis (PM) is a type of chronic inflammation of the muscles (inflammatory myopathy) related to dermatomyositis and inclusion body myositis. The inflammation is predominantly of the endomysium in polymyositis, whereas dermatomyositis is characterized by primarily perimysial inflammation.

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Things I've learned in a wheelchair

wonup
wonup
Hi everyone, right now I'm in a wheelchair with polymyositis when I go out with my husband, and as it's the the first time as a disabled person I have some thoughts.
1. Just because it says disabled bathroom, doesn't mean it is.
2. Friends who see you in the store, should NEVER grab the wheelchair handles and try to help. The toilet paper displays at Fred Meyer are not sturdy.
3. Most restaurants have a table your wheelchair can pull up to: dark corners waaaay in the back.
4. Ramps are HARD!
5.You feel every ditch, every bump, every door sill, every crosswalk grate.
6. When friends get to talking, they can forget they parked you in the sun at the farmers market. And a dog can mistake your chair for a fence post. Yikes!

I'll never take walking for granted again!
trpt1
trpt1
If I had a choice between a wheelchair and a walker with a seat, then I would pick the walker. You need to rely on someone to push you in a wheelchair, unless it is motorized. Having weak arms makes the chair difficult. A walker will allow you the freedom to move and sit as needed. I know at this time you need a wheelchair. I will put in a prayer for you to strengthen so you can move to a walker.

It is interesting what can be learned from experiences with myositis. I now need to think about parking close to an entrance. I also notice that no one cares to help. There is so much we must adjust to in this world.
wonup
wonup
I use a walker around the house and it has a tall enough seat to get out of. I can do about 4 minutes using a walker, and right now PT does not want me walking much until CPK is down to 700. Wheelchairs are efficient for shopping, and my spouse is pretty good with it. But I plan to be back on my feet and lap swimming and weightlifting asap. Then I can donate my aids to a good, local charity. Or that is the plan!!!
nanny1611
nanny1611
When I broke my leg 3 years ago, doctors and PTs suggested a walker. However, because I had to hop with my "good leg" (which wasn't good), and because my arms were weak, the walker did not work for me. That's when some friends found me a used wheelchair. It worked much better, but it does teach you a lot.

As for public restrooms, you're right. Some of them are not usable. Once when traveling, I went into one that had the handrail behind the commode above the tank. Needless to say, I left and drove to the next exit. Hang in there! You will get better. Best wishes to you!
pluggingon
pluggingon
Your optimism is an important part of your treatment! But having dealt with chronic autoimmune disorders for 20 years, I've found that things can change unexpectedly. The reason I'm mentioning that to you is that I'd not get rid of your wheelchair and other health aids too quickly. Find a place to store them unless you are able to replace them when needed. Wish you fast and lasting improvement!an
wonup
wonup
I have an 84 year old dad with a big attic, so not a bad idea to store some stuff. Most of the aids I have are from a local non profit I have consulted with who loaned me equipment. Homehealth was 6 weeks out from an assessment, so I took a shot at what I needed. Still, I have 3 boomer siblings, and you never know what will happen next with some weird issue. My dad hunts and fishes and is scary busy, so right now he's looking for a scooter for me. That seems too weird to be having him look for a scooter for the 53 year old daughter!
deleted_user
deleted_user
Wonup, If you are not close to 700 CK yet, take a look at the TMA website, and find the exercise and myositis video from last years conference. Ask your PT to watch it. There is a link to exercises on a sheet and the Dr. Ingrid LUndgren is amazing. She is from Sweden and did the pioneering research on exercise in mysoitis. Over doing it is not good but continuous work is good. I started about 8 weeks into my weakness and i am doing really well now at 18 months. I think the exercise helped me quite a bit all along the way.
Your attitude and willingness to try to continue your life are amazing and admirable. Keep at it and face forward.
Thinking of you, Shawna
wonup
wonup
I will! I'll go there now. I see her Friday and give her the link. Thanks Shawna!