Top products from r/ALS

We found 16 product mentions on r/ALS. We ranked the 15 resulting products by number of redditors who mentioned them. Here are the top 20.

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Top comments that mention products on r/ALS:

u/kittitakeapic · 5 pointsr/ALS

Hi OP, I'm sorry to hear about your dad - i know how difficult and awful this is. Here is something I did when my dad was sick.

Towards the end when my dad got really unable to communicate it got really painful to watch him struggle to speak, and really painful for us to try and understand him. I wanted to make it less stressful for everyone involved so I created these Index Cards for him, my family, and the nurses who helped us. They ended up being extremely extremely helpful!

I attached a link to a picture for an example - I'm wishing now I would have taken a better quality one when I finished them but this is the best I have. http://imgur.com/a/4MujI

Essentially I thought up general categories.. BPAP, Head, Feet, Bathroom, Other, Nurse, Family, etc. (or really any other broad category you can think of.. like Food or Drink or something would work too). Once I had those broad categories I created more cards for the more in-depth things.. so like within Head there might be a card for itchy, or scratch. Within Family there were cards for each family member and then things like I love you, How was your Day.. or other small things like this. And so forth with all of the other categories. I had cards for Left or Right - I maybe went a little overboard on it because it got a little difficult to organize.

But anyways, once I created all of those on the index cards i punched holes in the top corner and organized them by category, with the general category on top and all the more in depth cards beneath it. Each category got its own hoop ring (similar to this: https://www.amazon.com/Filexec-Products-Unruled-Colored-50294-20000/dp/B006NVLUEA).

From then on when we knew my dad wanted something but it was too difficult to speak or we couldn't understand him we would use the index cards to figure out what he wanted. I think it helped ease the burden a bit on everyone.

Sometimes when my mom walked in to my dad after a long day at work and she grabbed the card she would end up at the Family card, and under Mom was a card for I love you. Even though he couldn't say it out loud, he still was able to say it this way and I think that meant a lot to everyone.

My last suggestion, which is something my dad and i did until the day he passed was to play games on our phones together (we lived on opposite ends of the country). We played Words with Friends and Settlers of Catan online - 2 of his favorite games. And even though we weren't communicating through spoken word I know it meant a lot to both of us that we could do this. Feel free to PM me if you have any questions, want someone to chat with, or need more explanation on the cards!

And stay strong :)

u/Kbcurt · 3 pointsr/ALS

So sorry to hear about your step father. Good for you for being proactive and reaching out. This illness is so difficult. Hobbies will change and evolve but I understand the fear that with a loss of hobbies comes of loss of will. My father was an avid golfer, biker, hiker etc. Two years into this illness he now watches a lot of shows, takes road trips, etc. It changes but it’s absolutely a struggle. All I can say is I never thought he’d be okay with this stage, but I feel like it’s a matter of them learning they can still enjoy life, although it’s very different now.

I would recommend reaching out to your local ALSA asap. I regret not doing that sooner. They will be able to coordinate loaner equipment, help answer questions and be a great support system.

This item helped my dad get up independently for a long time:
Carex Upeasy Seat Assist, Portable... https://www.amazon.com/dp/B000095ZMP?ref=yo_pop_ma_swf.

I purchases it, set it on his chair without discussion and he continued to use it so I knew it was helpful. We started bringing it with us to appointments etc to get him up. He’s 6’7 so chairs were a real issue for us. There’s tons of useful equipment out there that can help. You’re already doing the right thing reaching out to a community like this for help. Hang in there.

u/kreismetal · 3 pointsr/ALS

Good on you for taking such good care of your mom.

I have this Wi-Fi enabled powerbar, which lets you control the outlets via a web interface or a Windows/Mac app.

http://www.amazon.com/gp/aw/d/B00CXWS848/ref=pd_aw_sims_3?pi=SL500_SS115&simLd=1

u/OliverFrodo · 1 pointr/ALS

I've had clients who have had good success with DVT prevention devices...like this

QUINEAR Air Compression Leg Massager for Foot Calf Arm Wrap Massage for Muscle Circulation with Handheld Controller 2 Modes 3 Intensities https://www.amazon.com/dp/B07Q7JTPBT/ref=cm_sw_r_cp_apa_i_nCDXDbQVRQWJ9

u/Ambrosial · 1 pointr/ALS

Well it is "legal" just can't but it at brick and mortar stores unless it's a private seller. You could possibly check out e-cig, vape stores, or head shops for local CBD retailers. I found something on Amazon that might work. I have never used, but the reviews seem good. Nutiva Organic Hemp Oil, 24 Ounce https://www.amazon.com/dp/B000GAO91K/ref=cm_sw_r_cp_api_ZLBSzbW73CZBJ

u/pcx99 · 6 pointsr/ALS

They can see to it you get a prescription for a power wheelchair such that you have it and are ready by the time you need it. If you wait until you need it then it will be months and months before you get it. Remember the power wheelchair isn't just for you, its also for your caregiver. My late wife wouldn't use any bed, she stayed in the wheelchair 24x7 because it was more comfortable and gave her a little control over her environment.

Remember this... In all your lifetime medicare will pay for a regular wheelchair, or a scooter, or a power wheelchair. For ALS the power wheelchair is the ONLY correct request, all the others will just be taking up space in your house in a few months.

With ALS ALWAYS plan for two-three months down the road, not where you are now.

As for a manual wheelchair... We paid on our own for this one for my fiancé's mother.

u/ActivateHeroShield · 3 pointsr/ALS

Hey man I think I found a solution I ordered the eye tracker and I'm messing with the software. My plan is to get a Windows 10 tablet, mount the sensor on top, and build a small mount that will be in front of his recliner for him to use!

Here's the thread where I talk to the creator of the software. It's called Optikey:

https://www.reddit.com/r/UpliftingNews/comments/68lvwy/remember_optikey_the_free_and_open_source/

And here's the sensor i'm purchasing, it should be in the mail tomorrow so i'll let you know how it works. The sensor is made for "gaming" but its made by the same guys who make ALS eye trackers and the guy who made the typing software recommends it for his software.

https://www.amazon.com/Tobii-LYSB01G3RAJI6-CMPTRACCS-EyeX-Gaming-Peripheral/dp/B01G3RAJI6/ref=sr_1_1?ie=UTF8&qid=1493651621&sr=8-1&keywords=Eye+tracker

u/reesuh · 1 pointr/ALS

To add to that advice, I wish I had done a guided father journal with my dad.

u/nomizzz · 2 pointsr/ALS

It was so difficult to find something that did this trick for my mom. In the end the thing that has helped the most, even now as she's progressed into a fully locked-in lifestyle are those airplane travel pillows (the ones shaped like a big U). We wound up getting like 10 different types, textures, and materials from different manufacturers depending on where she was sitting, and even use one now in her wheelchair -- even though the damn wheelchair headrest was $1k by itself, this $20 neck pillow is ironically what makes it bearable: https://www.amazon.com/Travelmate-Memory-Foam-Neck-Pillow/dp/B004UB056E/ref=sr_1_4?ie=UTF8&qid=1481137770&sr=8-4&keywords=travel+pillow

u/mantaz603 · 2 pointsr/ALS

On amazon you can find "Foam Grip Tubing", specifically designed to slip over everyday items such as toothbrushes and razors. We used them for a while before dad lost all of his ability to hold anything. Not sure if I can insert a link here but search for the quote above and you'll find lots of different options.

Check this out at Amazon.com
6-Pack of Foam Grip Tubing / Foam Tubing - Pefect For Utensils, Tools and More - BPA / Phthalate / Latex-Free https://www.amazon.com/dp/B06XTLQ95N/ref=cm_sw_r_other_apa_i_H9fLDbHD8Y0W6