This past week, I was jazzed. I like being proactive and figuring things out. I am part of a Facebook group that is only open to ALS patients. One of the participants asked us to share our favorite gadgets. This is extremely helpful for those of us who face new physical (and mental) challenges every day, and we learn from each other. Several good ideas were posted this week.
For instance, if there is difficulty with blankets hindering the ability to turn over, there is the “Blanket Tent.” I am going to check into that gadget.
A couple of ALS folks who have been around for a few years liked being able to control their power wheelchair from controls on their headrests.
There were even some fans of having a bidet, I am not explaining that one but I like it. The Head Scalp Massager was a favorite, along with having two-way walkie-talkies. Even my friends without ALS like having a “grabber” for those things a little out of reach.
There were a couple of things I really liked. A memory foam mattress topper was one item I researched. When you can’t turn over in bed, the obvious result is pressure point soreness. The research results were positive, so my family (thank you, Craig and Tricia) picked one up for us today at Costco.
Another gadget I liked was the Airdesk. My iPad has been a favorite gadget of mine for several years, unfortunately I now have what I call iPad thumb which causes me pain, this can’t be blamed on the ALS. Several hours a day, I read books and magazines, watch movies, keep track of Facebook friends, write blogs, and, of course, play Words With Friends on my iPad. Holding this with my left hand has caused this problem. During the day I move between my power wheel chair and my recliner, no matter where I sit the airdesk will give me a place to attach my iPad, hands free. Yea, I can’t wait to try it out, it will be here this week.
The item that got the most attention was the Easy Pivot Lift. At my last clinic appointment, the doctor prescribed a Hoyer Lift. I didn’t like this. It is hard to think that because of ALS, I will be paralyzed and need equipment like a Hoyer Lift. As I understand it, the Hoyer Lift is difficult for both the patient and the caregiver. Really, I don’t relish the idea of swinging in a sling, hoping the Hoyer operator will accurately pick me up and place me on the bed or in a chair. The Easy Pivot Lift appears easier for the operator (i.e., caregiver); therefore, it should be easier (at least mentally) for the patient/client.
Who knows, I will be doing some more investigation: will the doctor give me a prescription? Will insurance cover it? Is it better or just different from the Hoyer Lift? We will see.
At some point, I will deal with feeding tubes, computers for speaking and coughing, and breathing machines. But not yet, not today.
–Susan