Things that helped you as a PALS

KimT

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Nikki started a thread that was very helpful. It was things that helped you and things that you've discovered that are helping you. I thought it would be good to start it over because we have quite a few newly diagnosed members and, I'm sure, there are new ideas.

I've been in pain since early on. It first started in my back. I bought a Golden Lift Chair in January 2016 (thanks Laurie) and I live in that chair when I'm not on the computer or outside.

I also bought a bidet toilet seat (Bio-bidet 2000) in 2017. Everybody in the world should have one. No Covid TP shortage for me! I love the thing. At the risk of "too much information" the enema function really works.

A large iPad with a seat podium. The seat podium adjusts height and tilt and you can sit on it or just put it on your lap. It holds books and the iPad nicely.
 

Fusia

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I had hand onset, so these are the things that were most helpful to me:
– I'm in total agreement with Kim, my Toto bidet is a game changer. And, along the same line, learning to ditch the underwear and just go commando.
– A signature stamp. I got this soon after I was diagnosed, so I can still sign checks, legal documents, Etc. (I even took the stamp to the election office a few months ago so that is now my official signature on file for returning my absentee ballots.)
– My favorite low tech tools are a Robo grip pliers, a seam ripper with a beefy handle, and an ice skate lace tightener. I can no longer use the pliers, but I use the seam ripper to open packages and I use the lace tightener to help me grab or pull all kinds of things using the hook on the end.
– Using the Voice Control accessibility function on my iPhone.
 

Nikki J

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signature stamp is a must. Everyone regardless of onset should do one so you have it and while you are at it get ones for all the ways you want to sign letters like love, Nikki Nicole, love, Mom whatever

lock laces let you wear tie shoes without having to tie and untie. You can just slip them on.
dycem to help when your grip is going. Only way I can open a bottle though it is still challenging. Also useful if you need to anchor something slippery.

I have an electric lid opener which is great. Expensive though
 

KimT

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I also remember Nikki mentioned adaptive nail clippers. Thanks for the reminder....I need to get a name stamp. It would have been helpful last Christmas when I sent out a bunch of cards.
 

Nikki J

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The other thing related to signing/ cards is , if you are still able or have someone to do it, set up an address label app. I did several years ago when my dominant hand barely started. The one I have you can add from your online contacts if you have addresses there. I did not and it took a couple of months to get them in but it paid off right away that first Christmas. another thing I use is ecards.
 

KimT

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I had an app for addresses when I was working. After moving entirely over to an Apple workstation, I need to get another. Good reminder. I knew if we started this thread again the ideas would start flowing.
 

swalker

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Here are a few things that have helped me.

New kitchen knives, so I could continue to slice and dice. As my hand strength declined, I went shopping for knives that I could hold and control with little strength. I settled on Wusthof Icon Classic. The shape just worked for me.

Various bottle and jar openers. My favorite has been a Prepworks by Progressive 6-in-1 Multi Opener

Lightweight gloves with silicone dots on the end. As my grip strength diminished, I found that having gloves with silicone dots on the end allowed my to hold onto things a lot better. My wife picked up my favorite pair at one of her hand conferences (she is a physical therapist). I don't know the brand name, but they are great. They are not for warmth, just for help gripping things.

Tools of all sorts. I use screwdrivers and small pliers in ways I never could have imagined. I keep a pair of needle nose pliers and wire cutters in my desk drawer. I can do things with the pliers that I can no longer do with my hands alone.

Zipper Pulls. The zippers on all my jackets have zipper pulls. These lengths of string/fabric allow me to still grab and operate a zipper.

Button Hook. I have the Vivi PocketDresser Button Hook. It also has a zipper pull. It requires dexterity to use, but does help me get some buttons done that would otherwise be impossible.

This one might be unique to me. I used to wear athletic shoes with very flexible soles. My feet stick out beyond the end of the footplates on my wheelchair. Whenever I would run into a wall, door, etc., My toes would be bent up, sometimes quite painfully. Someone suggested I use shoes with a stiffer sole. Why didn't I think of that? I would up getting a pair of Timberland Men's Classic 3 Eye Lug Boat shoe. The soles are pretty stiff, but not too much so. They are easy to slip on. I really like them a lot. The only downside is that they are a bit heavy.

Steve
 

Nikki J

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Re gloves you said favorite pair was from a conference. Where did you get the others? What are they called? I did some amazon searchEs but I don’t think I used the right key words. Thanks in advance
 

swalker

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Nikki, the gloves my wife got for me at a conference appear to be "Foxgloves Grip Gloves".

I also use Pearl Izumi Cyclone gloves. These are long-fingered cycling gloves. They provide a bit of warmth and have padding in the hands for bike riding. The old version had silicone dots on the fingers. The new version uses something else, but it is very effective. They were my favorite long-fingered bike glove for milder weather back when I could ride a bike. Now I often use them on wheelchair rides in cooler weather.

I also have a variety of mechanics gloves. I think the last set I purchased at Costco. They are also effective, but I use them a lot less.

Steve
 

Nikki J

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Thank you Steve
 

richdees23

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thanks for all the great recommendations! there are so many things that you take for granted as simple tasks until the first time they become an arduous task. one thing i would suggest are magnetic button adaptors. i really like this this particular brand (which, if you knew me, is kind of funny...fashion is not my forté). someone would have to put them on the shirt for you, but after that, you're good to go. Search for "Buttons2Button" (edited to remove commercial link)
 

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Fusia

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Kim - can you show me an example of (or provide a link to) the seat podium for your iPad that you mentioned? I googled it, but couldn't find anything that looked like you could sit on it or hold it on your lap…
 

Krismn

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Great tips! I’m going to look into the adaptive nail clippers and signature stamp! Things that have been really helpful to me are:
-Zipper pull
-Eazyhold grip assist straps for utensils, toothbrush, cups etc.
-Biobidet
-Lift chair
 

KimT

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Here's a picture of the lap podium. It can raise up pretty high. I bought it at Relax the Back in Orlando. I've had it for nearly 20 years. I can't seem to find one like it online.

IMG-0310.jpg
 

Stacy93

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The iPad stand that I use in bed or if I'm sitting is like a pillow in the shape of a triangle that has a lip on the bottom to hold multiple devices. We bought it on Amazon, and it doesn't have any adjustments like the one shown above which is a negative, but its soft. I also have a flexible arm that attaches to my bed table, and a smaller one mounted on my chair that holds my phone and iPad in any position.
 
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