Vicki
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I ended up with shoes from Ortho Feet and love them. The heel has an adjustable strap (great for AFOs) along with an adjustable strap over the instep. Check it out
https://www.orthofeet.com/products/sanibel-mary-jane-blue
I find wearing an adaptive nightgown all day is easier for my husband to work with when using the restroom. The adaptive gowns open up in the back like hospital gowns.
https://www.buckandbuck.com/ -
Hi Scotty,
I agree that your BIL is very lucky to have you. I was diagnosed in May and have am stuck in a power chair because my legs gave out, my arms are very painful (I suspect they’ll be gone soon) and my voice is almost gone. Before I was diagnosed, my caregiver husband and I found this newsletter. By the time I went for my final emg test, we had no doubt what the outcome would be. I have the app on my cell phone but haven’t tried working with it yet. There are so many helpful people here, all going through the same thing. I urge you and your sister to also read this newsletter daily. There are lots of caregivers that need to hear they’re not alone too. Oh, and by the way, we’re all afraid. I just try and think positive, one day at a time. Best wishes to each of you.
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My neurologist suggested I take Miralax (Polyethylene Glycol 3350 Powder) and it works well most days. When I go two days without a visit to the bathroom, I take two stool softeners and usually have success. I know drinking water helps but I sleep a lot and forget to hydrate.
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After 15 months of waiting, I was diagnosed on May 11th with Sporatic Als. It’s been up and down for me but yesterday I finally got my camera out and had a peaceful early morning visit with the wild birds that come to our feeders. I’ve been a bird watcher for years and met lots of nice people that enjoy their cameras and the birds. To me, it’s a way to share with others how these wonderful tiny creatures can take our minds off of the day to day pressures of having a terminal disease. I am no longer able to walk but just sitting out on our porch, or at a window (I do photograph through the window sometimes), watching the birds try to find a free spot at the seed or sugar water feeders, grabbing worms from the wet grass or bathing in the bird bath can be much more relaxing than sitting in front of a television all day. Later I will search my images from the camera and hopefully find one good picture to share with my friends and neighbors. You’d be amazed at how many interesting stories that you could attach to those photos.
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My ALS doctor started me on Riluzole over a year ago and before he was positive I even had ALS. Now that I’ve been diagnosed, I still take it and I’ve never had a problem with it along with the supplements and Vitamin C. I hope the doctor is able to assist your BIL.