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Maybe it’s a “work around” or just a modern convenience, but I’ll bet we all use something that makes our daily lives a little bit easier, now that we live with ALS.
Mine is an electric toothbrush. Something that I resisted using for a long time, thinking switching from a hand-held toothbrush to electric was “giving up and giving in” to ALS. Was I mistaken! Rather than waste hand strength struggling with the old method, now I breeze through and save my hands for better things later in the day.
What items (appliances or gadgets) have made a difference for you?
Let’s share and learn from each other.
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My husband is at the point where he can’t walk distances anymore. It’s been 13 months since his diagnosis. It appears, right now, that he is an average ALS progressor. He doesn’t really want to use a wheel chair, unless absolutely necessary. An in-between option might be a motorized scooter. I’ve read some information that scooters aren’t useful for PALS very long. I’d like to hear from others what their experience has been with scooters.
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I have Bulbar onset ALS which means that the muscles that control eating, swallowing, talking (tongue) and breathing are affected early on. I have lost 90% of my ability to speak. I have two devices that I use to speak with. “Text to Speech” is a free app for iPhones. Just type what you want to say and it shows up on the screen and also says what you just typed in a variety of voices that you can choose from. Very handy for ordering in restaurants or shopping!
The second device is a tablet (Microsoft) that has a program similar to the Text to Speech but much more advanced. There is an attachment that I can get down the road when I can’t type any longer that reads my eye movement and types whatever letter I look at. Think Stephen Hawking.
It is a little spendy but Medicare and my Supplemental insurance paid 100% of the cost. The company is called Tobii Dynavox.Joe
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Hello Dee – – I’ve been using a mobility scooter for the past 5 years, and love it. (I was diagnosed in 2010) Mine is a a Drive “Spitfire Scout” (we bought it on Amazon). Here’s a photo of me with it: https://alsandwellness.blogspot.com/2015/01/welcome.html
I’m still able to walk using a rollator, but I don’t want to wear myself out with long distances (parking lots, shopping mall, grocery store) so I use my scooter. It’s great in restaurants (swivel seat) and at events. We did buy a van with a side ramp in order to have it with us at all times.
If you want something smaller and folds: There are ones like the 3-wheel, Travel Scoot, that folds up.
How long? It all depends on the strength and current symptoms of your pALS. I know a motorized wheelchair is somewhere in my future – – but using a rollator & and scooter now is helping me to keep my body strong – – as well as motivates me to do my daily exercises to stay mobile.
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A couple more items that make ALS life easier for me:
- Roll-in shower chair on wheels.
- Keurig coffee maker – – I love coffee but my non-coffee drinking husband has to make it for me. This allows him to make it fast, easy aynd no mess.
- My mobility scooter.
- My new voice amplifier (portable microphone)
I’ll add more as I think of them 🙂
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1. A thick Gel pad cushion which elevates me sufficiently to stand up independently (although usually on the 3rd trial).
2. Curved utensils and extra long silicone washable straws that come in a carry bag.
3. A wash mitten that has a side pocket to slide a bar of soap into. Then you put the mitten on your hand (well my husband has to) and lather up. (I am 1-handed).
4. Weighted ink pen with a large rubber grip.
5. A side grab bar to help getting in/out of bed.
And hopefully my Power Chair which should arrive in 2 weeks!
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Yes, Kathryn, those are great tips!
I would love to know what type or brand Gel cushion you use.
Some things that have made a difference for me are:
1. Oval 8 plastic finger splints (I wear one on the index fingers of both hands while typing on my laptop).
2. My Hugo rollator which converts to transfer chair mode.
3. My new Air Hawk electric wheelchair.
Confession: I really wanted a four wheeled scooter (cause Dagmar looks so cool on hers), but we don’t have a van, and my husband wanted something lightweight that folds and can be stowed in the trunk of our car. It weighs only 41 pounds without batteries. The batteries can be easily removed before folding and lifting into the trunk.
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I have a rocking knife that allows me to cut meat by myself (I’m one-handed). My commode keeps me from being ‘stranded’ in the bathroom a my lift chair (recliner) allows me to stand up independently. Another thing I love are my OXO pop-top canisters so I can access flour, sugar, etc. with one hand–that allows me to keep baking!
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a huge help to me is a rubber mat that my plate and bowls are placed on – I use both hands to manage the fork or spoon and this allows me to eat without chasing my plate.
Quantum chair and trilogy are essentials.
lightweight laptop has been huge difference maker.
bent spoon is big help
reacher grabber tool
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I’d like to add an item to the list I posted previously. I recently purchased a:
Drive Medical Folding Exercise Peddler
- It’s a convenient way to exercise legs and arms on days when you can’t get to the Y or gym or if you don’t want to invest in a full size recumbent stationary bicycle.
- It’s best to place the peddler on a mat or rug because it does have a tendency to slide on a hardwood floor.
- I can sit in my recliner chair and use it while watching TV or working on my laptop.
- You can place it on a table and use it as an arm exerciser.
I chose this peddler because it is made by Drive, is moderately priced and had good reviews on Amazon, but there are many different models available on Amazon, offering a range of choices.
With the spread of Coronavirus, I’ve made the decision not to visit my local Y for a few weeks (where I ride the recumbent bike) so I’m glad that I can use the Drive Peddler at home to help keep my legs moving.
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Ah, great topic, Dagmar. Since ALS is a progressive disease, our needs are a moving target. As a result, my favorite tools have changed quite a bit though my twelve years of life with ALS. My journey started with the loss of the use of my hands and arms. My speech was still fine, so Dragon Dictation was high on my list, as I could quickly type away without the use of my hands. Which was great. Until my voice decayed enough that the software had trouble understanding me.
Similarly, my legs remained strong but my neck got weak, and I couldn’t hold my head up very long while standing or walking. At that point, the Suteki Head Support System (stopheaddrop.com) became invaluable to me. [Full disclosure- I invented it for myself and now sell it online]. I could walk upright with good posture and see where I was going.Which was great. Until I got too unsteady on my feet.
Great. So now that it’s too tiring and risky to walk more than a few dozen steps at a time, now what? Unlike most of the other respondents to your post, I can’t use my hands. Indoors, I push myself around in my manual wheelchair by my feet. But all of the scooters and such mentioned in the other comments won’t work for me. But a couple of years ago, a friend found a great solution for my situation. It is called the HoverSeat. This is clearly not for everyone, as you need your feet to steer and drive it, and I need assistance sitting down on it and getting up afterwards. But it is comfortable, inexpensive, light weight, and oh-so-fun to drive. Check out http://www.hoverseat.us for details.
Next year, my favorite thing may be a motorized wheelchair with foot controls, or an Eye Gaze device like a Tobii for text to speech.
But overall, my hands down favorite (pun intended) is my Toto Washlet toilet seat. I have had one since 2000 with nary a problem. There are many different brands of the bidet-style toilet like the Toto, so shop around.You and your caregiver will love it.
I have a couple of lists of favorite tools on my dusty old blog, live-til-you-die There are several items there that were really useful, but this comment is getting too long so I will refer you there.
Again, thanks for the great topic
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