What are
/r/ALS's
favorite Products & Services?
From 3.5 billion Reddit comments
The most popular Products mentioned in /r/ALS:
![[6 Pack] Foam Grip Tubing/Foam Tubing - 3 Sizes - Ideal Grip Aid for Utensils, Tools and More - No BPA/Phthalate/Latex](https://m.media-amazon.com/images/I/4142hhhu5cL._SL500_.jpg)
The most popular Services mentioned in /r/ALS:
scrcpy
Colonist.io
The Noun Project
OfferUp
The most popular Android Apps mentioned in /r/ALS:
The most popular reviews in /r/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.
If you want pure text to speech, typing style, you can check out my app https://play.google.com/store/apps/details?id=com.texttospeech.tomford.MyVoice
Some of the voices are network based and require a connection, some are not - its in the name of each voice. I'll be honest its a time since i've worked on it as my mother is getting a lot worse - she sadly cannot type any more :( but she was the inspiration behind it!
Drop me a DM and i can throw you a promo code for the premium version if you like - removes the ad and adds some minor QoL features.
My BIL had bulbar so lost his chewing/swallowing almost immediately (as such I never recommended these). But I've been on keto for a couple years and love these https://www.amazon.com/dp/B08L5H8VVQ/ref=cm_sw_r_cp_apa_glt_fabc_DDX2AZPJ1AG27Y3AC5JZ
They're very crunchy so keep water close by, but tasty and packed with protein (I also really liked the salted carmel). May not work if the consistency is too rough, but you can always keep them on your diet if they're no good for your wife.
I don't have a recommendation for men's specifically, but this style of slipper worked well for my mom (easy to adjust toe box width) and depending on foot size might work well for a men's size https://www.amazon.com/dp/B07BKRPJY4/ref=cm_sw_r_cp_apa_fabc_TCYKZQAXDWGEVY0NEWQ8?psc=1
It's an old one, but Tuesdays with Morrie is probably the most well-known book on the topic.
https://www.amazon.com/Tuesdays-Morrie-Greatest-Lesson-Anniversary/dp/076790592X
VSED requires planning and support for the patient and caregivers. Three experts on this process wrote a book you may find helpful.
We have one of these for my mom and she absolutely loves it. It's open so her neck doesn't feel quite as restricted. The padding is removable so it can be washed, and its a bit more inconspicuous than a typical neck support (especially with her hair being a bit longer).
I did that!!
Super easy recovery. Been doing infusions for over a year now. Just keep it clean. I do 5 on/2 off then 5/2 again, so I got weekends w/out the needle in the port.
Its inconvenient to have the line dangling all day, so I use this from Amazon that makes it easy to tie it down. Breaths so no rash or itching problems and does not peel off when its hot outside.
My wife has ALS and we used a pivot disk to transfer her from wheelchair to toilet or bed or recliner and vice versa. Her PT showed us this option.
The care giver uses a gait belt to bring the person from a sitting position to a standing position. The person is then standing on the pivot disk and the caregiver can use one of their feet to turn the disk and the person being assisted.
We used this for over a year until my wife could not do any weight bearing with her legs and we had to go to a hoyer.
Transfer board. There's cheap bamboo ones or expensive Beasy ones. Watch some YouTube videos on best way to use. We had this one:
Beasy Premium Transfer Board - Original BeasyBoard, Model 1100 (40 in.) - No-Lift Transfer System, Ideal For Vehicle & Bed Transfers https://www.amazon.com/dp/B0056PRK0M/ref=cm_sw_r_apan_i_QBBNHPFV6HJKJY7P8GZM
Wheelchair Seat Belt Bed Restraints Safety for Elderly Wheelchair Harness Adult Seatbelt Medical Hospital Straps Vest Soft Chest Lap Buddy Chairs Seniors Disable Patients Prevent Sliding https://www.amazon.com/dp/B08DTYDVJV/ref=cm_sw_r_apan_i_4JAQYHSRGWQ1CGD1RVY0?_encoding=UTF8&psc=1
I know the focus here is oral suction, but I thought I'd add that my dad also uses nasal suction with an aspirator like this one:
We've used it ever since he lost the ability to blow his nose. Not sure if this helps because every one is different, but I wish you the best regardless.
While you acquire a portable electric suction unit this is a great option and low-tech. Remember when suctioning you apply suction as you slowly Wrigley the catheter out, never as you insert. Additionally have water ready to clear the catheter after each suctioning.
Suction Pump Machine Portable Manual - Vacuum Device Hand Help Suction Pump https://www.amazon.com/dp/B08YKG9WYG/ref=cm_sw_r_apan_i_PZWRV1971X914BR4S7GF
So sorry you're having to go through this. As someone that has als i can sympathize.
You could use something like this
Thanks for sharing. I can't seem to find it on amazon.ca
What's the main ingredient in it?
This came up when I searched Clear lungs by Ridgecrest:
The late Barbra Brenner who died of bulbar onset ALS complications was critical of how medical research is corporate controlled for profit. So limits to advancements. https://www.amazon.com/So-Much-Be-Done-Writings/dp/0816699445
The late Jenifer Estees who died of limb onset ALS upon diagnosis was disappointed at the lack of organized research,so she tried to leave a legacy in her name. https://youtu.be/s5R4TAnOquY
have a look here - reach out to these folks - see what they say. https://www.alsmndalliance.org/directory/als-canada/
The van is useful to anyone who is disabled for whatever reason.
This isn’t much of a different idea but perhaps a chart with icons for common requests so there is just less pointing and spelling and blinking ? Like a tv, a blanket, a radio, plus “on” and “off”. A pillow (to indicate it needs adjusting) etc...
I saw someone who had made one that also included some sentiments like “thank you” and “I love you” so it could be easier to express some feelings too. There is a website called Noun project that has a very large icon database you can use for free.
This one isn't over zoom, but it was really good for our family: https://colonist.io/
It is an online version of settlers of catan and can be done entirely without talking. Good luck in your search!
Don't give up my dude. You've got options. Virtual keyboards are standard with both Mac/PC, however the default keyboards are not necessarily designed to work for full time use. This is why I built a keyboard using "Hot Virtual Keyboard". It allows you to fully customize your keyboard, with keys for anything you could imagine. After doing some testing, we decided to add buttons for things like usernames and passwords. As typing out a username using a head tracker is tiring and cumbersome. I also made some python scripts and attached them to some arrow keys to use "Touch gestures" like swiping up and down on a touch screen. We attach his phone to the computer using "Your Phone" for windows, however I use another program on mac called "scrcpy". Link below!
In the process of documenting all of this on the Github for the project.
I now have extremely diminished use of my right (dominant) hand, and I was very pleased when I finally discovered these scissors.
If you want a quick fix for smart plugs and lights you can use RF based ones with remotes. My mother always tells me how much she enjoys being able to control the lights and fans in her surroundings. Depending on the ALS progression you might need to try other options that are easier to control.
(DEWENWILS Remote Control Outlet Plug Wireless On Off Power Switch, Programmable Remote Light Switch Kit, 100ft RF Range, Compact Design, ETL Listed, White (2 Remotes + 5 Outlets Set)) [https://www.amazon.com/dp/B07P7K2FHK/ref=cm_sw_r_apan_glt_fabc_T1GPZYR5FFRDVVYDRRRE]
(DEWENWILS Remote Control Light Lamp Socket E26 E27 Bulb Base Holder, Wireless Light Switch Kit, Remote Lighting Fixtures, White (Programmable, 3 Sockets 1 Remote, HRLSXXA Series)) [https://www.amazon.com/dp/B071HTNJ4N/ref=cm_sw_r_apan_glt_fabc_JXTEGV988D8HZN097F00]
this is a book that will teach you how to do caring touch it does not mention ALS but I suspect it'll work for ALS patients also
​
From the Heart Through the Hands: The Power of Touch in Caregiving
Review
"In this book you will find food for the head, hands, and heart. It is comprehensive, practical and inspiring." --Gayle MacDonald, author of Medicine Hands: Massage Therapy for People with Cancer and other books.
From the Back Cover
This book is for people who feel comfortable communicating through their hands and for those who wish to feel more ease in transmitting care through touch. It is for people whose responsibility or job or gift it is to oversee or to help care for the elderly and ill members of our society. It is for sons and daughters caring for aging parents with physical impairments that effect a role reversal in a lifetime of relating. It is for the courageous men and women who continue caring for spouses or mothers or fathers with dementia-related diseases such as Alzheimer's after such a disease has robbed that loved one of the ability to remember the relationship he or she once shared with the caregiver. it is for companions and family members struggling and sometimes sacrificing to provide care for their loved ones at home.
... It is for anyone who wishes to use touch more consciously and compassionately in relating to the elderly, the ill and the dying. (Dawn Nelson)
https://www.amazon.com/Heart-Through-Hands-Power-Caregiving/dp/1844090833
Like this?suction device
Another useful, cheap device that my dad found helpful while he was still getting around with a cane or walker was this claw-like metal or plastic contraption with a grip handle on the end (it is late and I can’t think of what it is called). He used it to more easily pick up items on the floor.
I remember shoelaces being difficult rather quickly for him, as his muscle atrophy first became apparent in his dominant hand. So slip-on shoes were helpful, though also caused problems with not being tight enough with the leg brace shoe attachment.
Just this morning I noticed these on Amazon and thought they’d be useful for an ALS patient or caregiver who has to put on the patients shoes.
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
Hi all, these buttons were getting hard to press for my father (60M, diagnosed 08/2016) to use to control his bed. We added the clear plastic button on top called “Bump Dots” which we found on amazon and it’s been much easier for him. I know we all are interested in continuing the independence of our loved one with ALS so I thought I’d pass on in case anyone is having similar issues. Hope it’s helpful! Bump Dots
This is an important point, but forget Medicare just get on Amazon and order a pressure sore matress. I can not swear by this enough. Never got a pressure sore when she was on this but did when she was in the hospital for two weeks.
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
I got this today for my Mom (found it in a stationary store, but posting the Amazon link) - planning on crowd sourcing from family and her friends:
Here's What I Want You to Know: 12 Cards with Fill-in Lists for Friends and Family https://www.amazon.com/dp/0451498321/ref=cm_sw_r_other_apa_i_gNz5DbWQDENCH
Is he able to move his head? If yes, try "Open Sesame" for Android. It allows you to controls a pointer by moving your head and it works really well. Here is a link to the app
If she’s able to move her head,
Build a laser and attach it to a clip that you put in her/her glasses, so that she can point words and letters written on a board. Here are some pictures.
Download Sesame on an Android phone or tablet. This software allows you to control a pointer by moving your head left, right, up and down and it really works well. Thanks to this, she can control her phone like everyone else and write on it to communicate with you. You can even download a text-to-speech application, so that she can somehow speak.
Tell me if you don’t understand. I really hope this helps you :)
After my dad was diagnosed while I was in high school, my mother gave me Tuesday’s with Maury and Augie’s Quest to read.
We’ve recently purchased one of those weighted blankets for my dad and he seems to love it. They are pretty heavy for the caregivers and my mother so be careful with that. Apparently they feel like you’re being hugged. Link: YnM Weighted Blanket (15 lbs, 60''x80'', Queen Size) for People Weigh Around 140lbs | 2.0 Cozy Heavy Blanket | 100% Cotton Material with Glass Beads, Dark Grey https://www.amazon.ca/dp/B075F9ST7G/ref=cm_sw_r_cp_api_i_kZMwFb72ZM8BN
The first board was given to us by a psychologist and the second one is homemade by my sister. Let me know if you need them, I can send you a pdf so you can print it out.
I made the laser myself. We bought some lasers like these and I welded it to a usb cable for phone. I plug the laser either to a power bank or to a charger like this.
We used to use laser toys before, but we often had to change the batteries. You can use this kind of laser if you can't build one.
Let me know if you have a question
http://www.amazon.com/Coco-Tips-Hookah-Mouth-100pc/dp/B002ZUA7ZG
what about something wider?
You can also buy vape masks, I dont know anything about them, and some of the pictures are kind of weird.