Over the years, the PatientsLikeMe ALS community has shared what products help them manage their new normal with ALS. From eye-gaze devices to elevated toilet seats and alternating pressure mattresses, we compiled a list of some of the products that you, the experts, are talking about in the forum. Check it out:
When it gets difficult to turn over, members mentioned:
- Drive Medical alternating pressure mattress
- Check out Amazon for a variety of inexpensive alternating pressure mattress pads and pumps
To manage muscle weakness, Kate shared a list of helpful products:
- For writing: PenAgain – alternative style pen, eliminates the need for a firm thumb-forefinger grip to write. Available online and in office supply stores.
- Magnetic closure shirts. The shirts have buttons sewn on the front, but the closure is secured with small magnets behind the buttons, including the cuffs.
- Devices that “cinch” your shoelaces (regular or elastic) closed so you don’t have to tie your shoes each time. An example is “lock laces.”
- The “Toilevator” is a very small pedestal that goes under the entire toilet and lifts the entire thing up about 3 ½ inches, works with a bidet seat.
When transferring to and from the toilet gets tough, members mention:
What products help you? In the market for something specific? Head to the forum – the community might have a recommendation.
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- Filed Under: ALS, Patient Experiences
- Tags: ALS, ALS community, bidets, connecting patients, coping tips, eye gaze device, forum discussions, help, life with ALS, PALS, patient advice, patient tips
Service animals are often a topic of conversation in the PatientsLikeMe community, and many members frequently share their experiences with their furry friends. For example, Ted wrote about his service dog Catti-Brie in his blog interview.
Here’s what other members are sharing about their animals:
“Just last night when I was having a rough dream [my dog] stood with his paws front paws on the bed and barked till I picked him up and he laid across me and snuggled me to sleep again.”
“I have a mobility service dog that helps with my balance. It’s like having a smart cane. When we go for walks she wears her mobility harness, but when we are home she only wears it when I’m having a bad day. She is also trained to do many other things like get items for me, and pick up things I dropped. She can also turn on/off the lights and open/close doors.”
“Mali is my mobility and medical alert service dog. She has saved my life twice so far… as well as told two of my friends when they had tumors. She went through a spell when she was younger when she thought she had to tell everyone who was ill where their boo boos were.”
Previously, members shared their experiences with service animals in a Canine Caretakers blog post, and others contributed to forum posts on the same topic. If you would like to share about your service animal, head to PatientsLikeMe. Don’t forget to share a cute picture of your pooch (or other animal)!
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- Filed Under: Patient Experiences
- Tags: animals, assistance, cat, community, companion, condition, dog, friend, help, Members, Openness, PatientsLikeMe, pet, service, sharing