DeAnn R

Hey Crystal! It is wonderful to hear from you. Unfortunately it isn’t advised to post personal information through the forums. I’m not sure if you’re on Facebook or not but I know a lot of folks exchange info in the Living with MD group. Maybe check that out. Hugs! Glad to know you’re here.

Technically I don’t think bean bags to straighten knees is a thing, but apparently it was the go to heavy object I guess. Push through the pain must also be a popular motto. Sorry to hear PT was so miserable. Glad it got better as time went on. Hopefully therapists are learning how to better work with patients like us. Do you do PT as an…[Read more]

Other than the typical stretching we didn’t do much. I wore orthotics on my feet and a brace for my back but neither did much good. Do you wear any braces?

Dodged a bullet with the Botox for sure. It doesn’t seem to be common knowledge that it’s contraindicated for those of us with neuromuscular diseases.

Good to hear from you Crystal! Sorry to hear your contractures are painful. Do you do anything that brings relief? I’ve heard surgery can be a difficult recovery and doesn’t have a high success rate. In theory it seems like such a good option.

Welcome Selouna! Sounds like you keep busy too. It’s always great to have perspectives from around the world. How are disability services in South Africa? More importantly, depending on who you ask, how’s the weather? I’m suspecting I might be a bit jealous with your answer there.

You make me want to resurrect my old recorder. Once upon a…[Read more]

I finally figured out I can use the hip abductor as an armrest to prop my left arm in the correct position to aid my right arm so I can reach my mouth. Up to that point it was so frustrating because I could do it in my old chair no problem. It’s a Permobil F3. I call it the gutless wonder.

Haven’t seen Outer Banks. Was it good? I think you’d like Bridgerton. For the wardrobe for sure if not for the scandalous affairs.

Roger that! Reminds me of the cb radio days.

Oh good! Your message came through as well. Fingers crossed the glitches are gone.

Yay! Thanks for responding.

How many chairs have you had in your lifetime so far? Did you have a favorite? Mine was my Invacare Storm Torque 3. Unfortunately it doesn’t have the features I need anymore. My Quickie was nice but needed repairs way too often. It’s so difficult transitioning to something new. Columnist Brianna Albers once compared it to breaking in a new…[Read more]

We see your post! Sorry you’ve been having issues. Promise our tech department is working on it. Thank you for being patent.

Actually, the zombie aspect takes a back burner I’m finding. I’m a reality TV fan too. What tops your list? Please don’t say The Bachelor. I know it has a following, I’m just not one of them. I’m more of a 90 Days fan. If you like chick flicks I assume you’ve watched Bridgerton. Is season 2 worth watching?

I have to admit sometimes I struggle with the concept of Rare Disease Day. For some reason this year it’s especially challenging. Sometimes it feels like I’ve spent so much time and energy trying to bring awareness and yet it seems like life is still a struggle. When I see videos like this it reminds me that I’m not in it alone. Maybe if I…[Read more]

Those sound like fun projects. Pondering how you craft a pickle. Do you have a favorite craft medium? Lately I’ve been paper crafting. Mostly cards because they’re small.

Have you had Lola since she was a kitten? I miss my ol’ kitty Tic-Tac. She was 15ish. My aunt rescued her from the streets. Now I have a 2 year old I call Little Kitty…[Read more]