-
What assistive device is helping you right now?
For ALS patients, assistive devices are helpful and can improve their quality of life. Everything from wheeled walkers to electric toothbrushes, to text-to-talk apps to specialty-designed eating utensils are in use.
What is the most new-to-you assistive device that you’ve begun using? Which devices have helped you the most?
-
32 Replies
-
Chi Machine helps with morning stiffness
-
I would love to get more information about this. Morning stiffness and pain is really bad for me.
-
I have a respiratory, suction machine and also cough assist machine
-
-
Similar to Nettie, my muscles and joints are also stiff in the morning – -I find that while lying in bed, if I do gentle stretches (such as pulling knees to chest, twisting body, and arms reaches) my body moves much easier for the rest of the morning.
I know of Chi Machines, and while they offer a gentle shaking of the lower body while you lay passively… I prefer to stimulate my body’s muscle movement through intentional exercise.
-
Hi,
What is a Chi machine, never heard of it.
Than you
Sara Y.
-
I will have to look into this! I didn’t know this exists.
-
-
The trilogy (NIV, cough machine and suck machine), electric wheelchair, tobii , electric toothbrush and hospital bed
-
Sit to stand machine, power chair, suction machine, 2 trapeze over bed, urine bottles in bed, water thickener, letterboard to talk, also ‘Tiny talker’
-
I use the Read Aloud app on my computer to prevent eye strain and help me maintain good posture – – for reading various online blogs and articles. It’s a timesaver too. Even though this isn’t an app specifically for ALS, I think we spend too much time and energy straining at our computers. Listening helps in mentally processing the information.
-
I am a caregiver.
my husband was diagnosed in November. It is in his belbar?? mouth area, he can no longer eat all through feedtube. On good days I can understand earlier in the day. Later as he gets tired harder to understand. I have ADHD and I take methylphenidate 20mg 2x a day. For people without ADHD gives energy. Our family doctor put him on this and it is amazing how much it has helped with energy level. Thought I would share.
-
Hi Dagmar,
Is that Read Aloud app an app you purchased, or is it something that came with your computer? I have a Mac.
Len
-
It is an app: “Read Aloud: A Text to Speech Voice Reader” I found it via Google. Works great for emails, documents, websites, etc.
-
-
-
Netti, do an amazon search for Chi Machine
-
I use an electric wheelchair to get around the house. Most everything is reachable now. I miss going out in the neighborhood. The city won’t help me by reducing the curb height. Having a computer is really great for written communications.
-
My husband uses the cough assist, suction machine and nebulizer machine for levalbuterol, saline and Ipratropium, we use theses daily and is keeping my husband out of the hospital and clear lungs, thanks God.
-
Obi adaptive eating device, Rollator, bone conducting headset with microphone to dictate for typing and foot pedals for left/right mouse clicks.
-
I found this interesting. My dad died of ALS in 1969 when I was 5. Now I have it at 60. So, lately I depend on a walker for support and my sisters pondered on how our dad, who they remember better than I, never used a walker. Mr Google told me walkers as I have, standard aluminum tubing, were not invented and patented until 1970. I found that very interesting.
-
Wow, that is interesting. It is such a simple devise and idea, and needed by so many people it is hard to believe it wasn’t available until 1970. I guess people relied on canes until that wasn’t sufficient. Thank you for sharing. I find fun facts (or not so fun facts) interesting!
Amanda
-
Here’s a bit of history about walkers and rollators 🙂
https://alsnewstoday.com/columns/als-patient-learned-roll-through-life-with-rollators/
alsnewstoday.com
ALS Patient Has Learned to Roll Through Life with Rollators
Patient columnist Dagmar Munn writes about how her opinions about using Rollators for mobility have changed over the past several years.
-
-
I use Bipap for about 22-23 hours a day. I feel great difficulty in communication with my family members because they cannot hear me while my Bipap mask is on. Someone on the forum suggested to use SPEAX (https://www.ataiamedical.com/)
I contacted the company but unfortunately they refused to provide me the device as they do not sell it to people outside U.S.A. I really need this or any other similar device for communication while my Bipap mask is on. Can anyone help me to get SPEAX or any other similar device.
ataiamedical.com
Ataia Medical – Empowering Patients with the Freedom to Speak
Ataia Medical – Empowering Patients with the Freedom to Speak
-
This looks like a great device. I will contact the manufacturer and see what I can do. No promises but I do run a DME company. Hopefully they can do something.
-
The manufacturer has already reached out to me. They will have a meeting with me scheduled over the next few weeks. I will let you know the results of that meeting. Thanks again for bringing this device to our attention.
-
-
My husband had the same problem. Uses his NIV 24/7. He switched to a nose mask, Airtouch N20, after trying a lot of others. This one works well and he can talk and eat with it on. He uses the full face at night.
-
-
Thank you Mr Ortiz for your assistance. I will wait for the outcome of your meeting with the manufacturer.
-
Outcome was good. I have just sent a PO to purchase the first one. I will be assessing it first to make sure it works and work out the kinks, if any. Once I play with it for a bit, I will reach out to you to see how I can get one in your hands. Just FYI it does require an RX (prescription) from any doctor in order to obtain. I will keep you posted.
Thanks
-
Dear Ortiz,<div>
Did you get the device. Please let me know so that I send you a prescription for it. I thank you for your assistance.
</div>
-
It has not arrived yet. I suspect later this week. I will keep you posted.
-
I am waiting for a positive response from your side. I hope you have succeeded in acquiring the device.
Thank you
-
Just came in yesterday. I have tried it on my full face mask and had success. The manufacturer claims that it does not work on 100% of the masks. They said we really just need to try it. If you wish to purchase one then let me know. My cost is $500 and I will sell it to you for $600 shipped to your door. If you want some pics then send me a text and I can send them over. I will also need an order. Order just needs to read “provide patient with an Ataia speax device for full face mask”. My cell is 210-776-2251 I can give you instructions for faxing over prescription. Please understand that I cannot guarantee that this device will work for you. So I cannot accept returns once purchased. If you prefer to wait then I will be actually trying this out on some ALS patients soon. May take me about a month to try this out on some patients and give you a better feedback.
Thanks
Fernando Ortiz Respiratory Quality Services
-
-
This is the mask I used. Notice just above where I placed the sticker for the microphone are some holes. Those are the exhalation holes. Very important not to ever cover those up. That’s how Co2 is released. Every mask has a different exhalation port.
-
I use iVolveF1A full face mask by BMC . Have you tried the device on this particular mask. Also can you give a list of full face mask with which it has worked. I will check these masks in local market here, if available there won’t be any issue.
Thanks
-
-
Log in to reply.