Extend Your Independence With These Practical and Functional Product Recommendations
Trying to navigate the post-diagnosis ALS experience parallels being on a scavenger hunt with very vague rules. You can search out mental health support groups, medical support, and devices but just trying to find practical everyday advice to maintain your independence for as long as possible is elusive. I decided to create a concise list of EssentiALS that had been referred to me or that I went out to research online once a need or obstacle had presented itself to me.
In many cases, I ended up purchasing multiple products to find the ones that worked the best for me. Although I am listing these products, I do recommend researching other potential related products to find what may suit your needs the best. After all, each person’s journey is unique but I am hoping that you will find value in the headstart I am listing below to lead an independent and productive life for as long as possible.
Good luck, think positive, and let me know if any of these help you and certainly reach out to let me know any additional products that we should add to this list to make it as comprehensive as possible.
Ron’s EssentiALS List
Zipper Pulls
In losing “pincher” strength between my pointer finger and thumb, I found that adding the zipper pull products to luggage, backpacks, coats, etc. helped me very much. Here are two designs that I felt were the best.
Zipper Pull Link 1 | Zipper Pull Link 2
Bendable Adaptive Utensils
When losing range of motion in your shoulders/arms, being off even a little bit makes for a very frustrating meal. These customizable utensils I found to be invaluable to adjust to your particular issues with limitation of motion. Although they are not the most aesthetically pleasing or discrete, they work great.
360 Degree Rotary Nail Clippers
When losing hand strength and dexterity, I found that certain angles of cutting my nails were getting very tough. The rotating clipper head and long lever handle really work well to compensate for my issues. They are called toenail clippers but work fine for hands. I had ordered a few different designs that I thought would theoretically work but I found these to be the best of the lot.
Key Extender
Similarly with the zipper pulls, trying to turn a small key to unlock a deadbolt or similar tough locks can be an issue. Depending on how much leverage you might need the two examples shown below are very good to consider.
Key Extender Link 1 | Key Extender Link 2
Multifunctional Bottle and Can Opener
Everyday twist-off products are more places than you realize until you have a hard time opening them! This product and other products like it allow me to open many more products without bothering someone to help me.
Rehabilitation Robot Glove
This is a very progressive product that even optimistically surprised my ALS team when I told them about it. It is designed to help neurological issues and help retrain the brain and muscles for hand movement. I bought it to help stretch my fingers as well as to maintain as much dexterity as possible. It has a series of different exercises and I enjoy it very much.
Button Hook with Zipper Pull-Dressing Helper
This is a very well-designed tool if you like to wear dress shirts. The tool definitely works but I still find it somewhat time-consuming and thankfully I’ve never been a dress shirt sort of guy. I do think if you do wear something with a lot of buttons it’s still a very handy tool. There is a small zipper pull hook at the end of the handle that I do use and is a very good add-on.
Button Hook / Zipper Pull Link 1
Diabetic Socks for Men & Women
I assume that there just aren’t enough ALS cases to call these ALS socks instead of diabetic socks, but these things are a must-have. I cannot tell you how many pairs of these I have purchased. Very easy to get on and off, and very comfortable. I like the product in the link below but there are many different variations with different cuts for both men and women so do some research until you find the pair that suits you the best.
Seat Belt Extender
This was another thing that I had no idea existed until I searched it out. Every car we own has the seatbelt latch in different places and at different heights, some of them were incredibly frustrating to get to. I searched to find out whether or not there was a product to solve for this and sure enough, this is what I found.
Massage Roller Stick
I’m not really sure if this is a “must-have”, but at times it really feels good and it’s cheap. They also sell small ones that you roll your foot over that feel equally incredible. On top of that, they feel great for everyone in your household.
Massage Roller Stick Link 1 | Foot Roller Massager Link 2
Rechargeable, Portable Handwarmers Bag
I have found with ALS that my hands get cold very easily, which affects my dexterity even more. I’m not saying that it’s overly stylish or discrete but I use it around my house when I’m watching TV or sitting on endless phone calls. They work great, are rechargeable and can be used if you’re going out for a walk. As most ALS people know, getting gloves on and off can become quite a chore!
Handwarmer Bag Link 1 | Pocket Handwarmers Link 2
Lamp Turn Knob
Adding this to the same categorical issues with the keys and zippers, turning lamps on and off can be another frustrating thing. By unscrewing the existing ones and replacing them with this product it is a simple game changer.
Reusable Metal Straws
Similar to the utensil issue, lifting your glass can sometimes (always!) be a challenge. These metal straws come in different heights and shapes. They also come in different finishes and with a carrying case so you can bring them out to restaurants and not be self-conscious about asking for a straw.
Grip Support for Writing
I tried at least four completely different designs/products to see if any of them would be beneficial. This was the only design that I felt really helped. It didn’t make my handwriting 100%, and you do have a bit of a learning curve to get comfortable with it, but it does work. I don’t see myself sitting down and handwriting a novella anytime soon, but for limited things it’s good.
Magnetic Closure Designed for Apple Watch
I have always worn a watch, and although my collection of traditional watches is no longer in the regular rotation, my Apple Watch is. This in genius design is magnetic. It is easy to get on and off, adjust to any size wrist and they come in many designs. This is only one manufacturer but it is the one that I have and like.
Car Door Handle Assist
This product was recommended for me to add to the list. This product is for pALS whose leg strength is being affected. This intelligently designed tool is portable and slides into place when the car door is opened to allow people to rely on their arm strength to safely get in and out of a vehicle.
Found a product that has helped you or a loved one living with ALS, please share it with us!