- Reacher-Grabbers. I have four of these―one for the garage (I’ve dropped my keys more than once), two for the main living area of our house, and one for upstairs. Three of them are “cheap-o” models I got for about $4 each at Harbor Freight Tools. The fourth is more substantial, with rotating grip jaws and a telescoping body. It is robust enough that I can lay a fire with it, including placement of small logs.
- Telescoping Magnetic Pickup Tool. A very handy device for picking up small- to medium-size metal objects like cutlery, keys, or pens. These sell for about $6 on Amazon―and Harbor Freight Tools sells comparable models for slightly less. Are you catching a “clumsy vibe” here?
- Telescoping Walking Sticks. I bought a pair on Amazon for about $26 and use them both in tandem like ski poles, as well as using individual sticks along with my normal cane. They can be adjusted from about 26 to 53 inches in length, so they can fit into luggage without a problem.
In addition to these helpful devices, I’ve learned a few tips and tricks that make a big difference:
- A nod to our son, Sam, who programmed the driver’s seat memory in my car―using the second setting to raise the seat height to the max and tilt all the way forward. It adds a little more than two inches in height from my normal driving position…. Every little bit helps! I use this second memory position to help me get into and out of my car with less discomfort, putting the seat into the first memory position once I’m inside and ready to drive.
- If you have difficulty getting up from a seated position, have a helper grab a belt loop on the back of your pants and gently pull upward as you raise yourself out of your chair with your arms. It doesn’t take much extra boost to do the trick.
- If you think you need a new mattress soon to help you sleep comfortably, try a memory foam mattress topper as an interim step. We found that it made a huge difference (for both of us) and four years later are still using the same one.
- This isn’t really FSHD specific, but many of us are at the age when hearing aids are in our futures (or already a part of our daily lives). I had known that aids were in my future for some time, but had balked at the high cost. Then I checked out Costco’s pricing and took the plunge. Their store-brand Kirkland devices were about $1,800 for a pair, much less expensive than big-name brands, and they are manufactured by a well-known leader in the industry. The quality is excellent, and the nearly invisibly tiny units have been a lifesaver.
I hope these tips and products can help you as they have helped me―and if you know of any others, please share them with the FSHD community! Write to June Kinoshita with your favorite hacks!