A brand-new sub-forum: Let’s discuss mobility, technology and medical equipment

[doug wilkins]

look up Solo Rider golf carts. I have been using one for 6 months. it keeps me playing and its great for just getting around outside.  the seat rises up to help you stand and swivels to get you out.

[Jackiekrnbsnals]

Is an UP Walker any better than a standard rollator or walker?

[Dagmar]

What is the “UP” ??

[Bev]

<p style=”text-align: left;”>I have an upwalker for sale in Ontario Canada.  Its made in California. I had to go across the border to pick it up. Not available in Canada. If interested text me 519-988-9111</p>

[Duane]

I have had custom AFO’S for a few years and they always create pressure sores at one or two areas on my feet. My main problem is foot inversion of both feet.  I will be getting new ones soon from a different clinic and will address these issues.  My PT says sores are common with wearers.

[Beth Rookey]

Hi, I don’t agree with that. I’ve had my AFO’s for 15+ years & have never had sore spots on my feet! My Achilles tendons are very short, I could be en pointe if I were a ballet dancer. Mine were molded at Hangar & I haven’t had any problems. Good luck!

[Dagmar]

There are so many different styles of AFOs – – and feet – – that I think everyone has a different experience with them.

If they hurt your feet, keep trying out ways to help alleviate it…even maybe getting new ones. I first had to find a new brand of shoes, then add padding, take that out and finally pad my toes. Just keep looking for a solution. AFOs help keep us upright and walking – – and out of a wheelchair.

“How I Learned to Like My AFOs” — https://alsandwellness.blogspot.com/2021/03/how-i-learned-to-like-my-afos.html

[Dick]

Thats good to know. Im getting my AFO from the Hanger Clinic. But dont know what model yet!

[Dagmar]

Dick – – that’s where I got mine. Let us know what style you end up with and how you like them.

[Duane]

‘UpWalker’ is just a brand name. There are many similar ones on Amazon and elsewhere.

[Perfecto Cobian]

I bought thin rubber insoles to use with my AFO. You can also try removing the inner sole of the shoe and use it overt the AFO.  Also NB has mesh shoes that stretch and are very comfortable when using the AFO.

[Mary Tiknis]

I have found that the higher walkers that keep you up right do not work outside every bump  that you encounter makes the upright walker tip I like the lower Rollator is much more convenient and it doesn’t tip when you’re walking outside

[stephen]

I am looking into hospital bed mattresses.  Does anyone have experience with foam vs air mattresses.  Also I experience lower back pain as I  li e  on my back, in one position, for the entire sleeping time.  Any thoughts?

Steve

[Duane]

Hi Stephen, I have both types. My air mattress is okay but has a few drawbacks . The main one is that there is not enough support on the sides of the bed where you need to sit before standing up . I felt that I would slide off the bed onto the floor . It has a different cover on it which is not as comfortable as a foam . And you need to set it to move at an interval you can tolerate and stay asleep with .

As for foam I have used only one , the Invacare Softform Premier which I really like . It is designed properly and does not present the problems  of the other . There is a good video on YouTube.

I don’t remember the name of the air mattress , but many of them are junk from what I have noticed .  Mine seems to be good quality .  The key is to not stay in bed too long and change position .

[stephen]

Duane,

thanks for you r reply.

Steve

[Mary]

Duane,

Thank you for the information.  My hubby is to the point of needing a hospital bed.  He s struggling to get out of bed as his arms continue to weaken.
I worry about the size of a hospital bed.   Do they come in different sizes.   He has Respiratory Onset so he needs to be elevated and on his side.   He is 6’ 4” and 260 lbs at this point.  We’ve looked into Tempur pedic and sleep number hoping for comfort plus to be able to meet his needs, however, neither worked to sit him up high enough to sit up and swing his legs over the edge and his feet hung off the mattress.  I don’t know how he will ever be comfortable on a typical hospital bed.    Any suggestions or information would be greatly appreciated.

Thank You

 

 

[Duane]

Mary, there are many available on the internet and from local medical equipment stores. It requires set up, so a local store may be the best option.

[Duane]

Mary, I suggest you contact ALSA (ALS Association ) who can give you better advice than I. They may send a nurse to evaluate your needs and help you with this .

[Martin Seekings]

Hi, Steve and Duane.

I use a hospital bed, courtesy of the ALS Canada Association loan pool. The mattress is vinyl-covered foam, with ROHO inserts at hip and foot level. I also have ROHO cushions on my wheelchair and lift/recliner chair. They are great at spreading out your weight and avoiding pressure points, and are available in many configurations. Check them out at roho.com or on Amazon.

I use 36×82 inch fitted bott0m sheets, and regular twin size top sheets. I also have a fixed pole and and a floor turntable to help me transfer between bed and wheelchair or commode.

Martin S

Ontario, Canada

[Vijaya Kodali]

My wife is an ALS patient since 12 months and she has no strength to:

1. Roll on bed
2. Cannot sleep on her back
3. No strength to hold her waist, hips (tendency of falling) and knee.
4. Left leg completely weak, right leg 3/5.
5. She sinks in the bed due to lack of strength in waist / hips

She would like to change her sleeping position every one to two hours from right to left shoulder and vice versa to get some relief. We have to physically roll her, due to softness of foam beds, rolling has become difficult. I have tried several mattress including air mattresses. But not comfortable using anyone of these.

Finally I did some home work on hardness of foam and selected a foam from ILD chart which gives info on various types of foams available in the market. Finally selected High Resilience Foam (Extra Firm ILD 70). It is standard foam available with all foam manufacturers. It worked well and now we can roll her easily since she does not sink. It is neither too hard nor too soft. We covered this foam with soft bed sheet / comforter to make little soft.

Hope this info may help and I look forward from the forum any better solution to make her more comfortable.

 

Thanks

 

Ramesh

 

[Maggie Broeren]

Hi Steve,

it took me three mattresses until I slept comfortably.  I’m using an alternating air flow mattress, provided by our hospital bed vendor. It cost approx $1000… worth it now that I’m sleeping better with only 1-2 turns p/nigh5.

Maggie B

Milwaukee WI

[Angela]

I have been using a rollater for 2 years and the Empower Rolling walker by Medline is by far my favorite. It has great storage, top bench where you can sit comfortably and folds easily.  I got mine through Costco. Tried the  Upwalker and did not work for me.

 
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[Carolyn Barry]

I bought a rollator on Amazon and it makes my walking so much easier and safer. It is the Momentum Rollator, made by Medline. What I like most about it is that it is narrower than most other rollators, so it’s great going through doorways. It is lightweight, easy to fold, and rolls very easily over any type of surface. I’ve used 2 other ones and by far, I like this one the best.

[Kris]

I recently got a hospital bed. The invacare premium foam mattress it came with is too soft and makes my back hurt. I now have a firm latex mattress which is more comfortable for me. The twin xl mattress fits on the hospital bed although it is a couple of inches wider than standard hospital bed mattress.

[stephen]

Kris,

 

thanks for for your response.  I got an air mattress with a firmness adjustment and it works fine.

steve

 

[Sandra]

RE Voice Banking
My voice is now fading and I just learned about voice banking. I submitted an application for technical assistance from the Gleason Team, and I’m hoping they can lead me through the process. It is very disheartening to know that my ALS Clinic never advised me about voice banking and that I should have begun the process when my voice was strong. If you have banked your voice, I’d appreciate knowing the steps required and what I should do first. Thank you.

[Maggie Broeren]

Hi

Although I haven’t lost my speech yet, I’m using an IPad/iPhone app called Speech Assist AAC. It has been very easy to use and allows you to customize words, phrases and sentences.  Cost- $18 US.

 

Maggie B

Milwaukee, WI

 

[MICHAEL ADACKAPARA]

I recently recorded my voice through Team Gleason (grant) using Acapela (program).  Once Team Gleason approves your request, you will be contacted by someone from Boston Children’s Hospital to guide you through the process.  They will loan you the appropriate equipment free.  You may want to do voice banking (most useful) and message banking (limited use).  Voice banking will reproduce anything you type in into your synthetic voice and message banking will only reproduce the limited messages (e.g., thank you) that you banked.  Please follow the instructions carefully.

[Dagmar]

I never was interested in voice banking. Seemed like a waste of time – – better to spend it learning how to keep speaking… which I have been doing for the past 6 yrs since onset of dysarthria. I don’t mind the artificial voice of AI. And don’t need to have a synthesized version of my voice coming out of a device. This may sound harsh… but I believe too many pALS are duped into thinking that there is no hope for their voice.

[Alan Larrivee]

A year ago I started noticing that I was slurring some words at the end of the day. Got in touch with the fine folks at Boston Children and they set me up banking messages and sent them to Accapella. Today I can barely be understood when I speak. No training on this earth would have saved my voice. But I do have a way to communicate and make my self understood. My synthetic voice does sound like I used to. My wife children and grandkid along with my friends appreciate the voice. I have some special messages in the bank only to be played when I’m not around anymore.

I can recommend voice banking with out reservation. I have no regrets about doing it myself. I am greatful for all the folks that helped me.

[Jennifer O'Brien]

I use a <b>Nitro Euro Style 4 wheel rollator,</b> which I got through Amazon, around the house. (I splurged and paid out of pocket.) I use the seat as a tray, e.g., my laptop, for moving things from room to room. It also has a great built-in bag at the front for transporting things. It’s very sturdy and helps prevent falls. Its only limitation is that it is too heavy for me to lift myself into the car. Others can lift it, but it’s not light for them either. For that reason, I splurged (again) and also bought an <b>ultra light, carbon based rollator called ByAcre</b>, from Sweden, which I’ve used every time I’ve gone out for the last year. I returned the “organizer” bag that hooks in the front because, while stylish, it kept slipping off. I can easily whisk it Into the car. The only limitation is that it is not as sturdy as the Nitro. I’m very light – 5’7, 120 – and feel like that’s a good weight for it, though it looks on their website like bigger people use it, too.

I want to mention another product that could be great for patients who maintain strength in their legs and have the space to store it and access to an outdoor environment to use it in. It’s called the <b>Alinker</b>, from Canada. It is a three-wheeled walking bike that has been promoted by actress Selma Blair, who has severe MS. I have not bought one because my living arrangement would make it challenging to use, but for people with slow progressing ALS it could be so liberating for getting outside on paved or dirt paths. It’s elevated, so the rider is at the same level as walking companions. I know ALS patients in the UK, at least, have done fundraisers via Alinker to purchase them. https://www.thealinker.com

[Jennifer O'Brien]

I recently discovered the Vive Reacher Grabber 32”, an “Extra Long Mobility Aid,” which enables me to pick up things off the ground that I have dropped, or even reach for clothes on my shelves. Effective at picking up a tiny pistachio shell, or a piece of paper or a sweater. Light weight. Folds in half. I keep in the basket in from of my rollator. I see that it’s on Amazon.
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[Duane]

Notice the exorbitant prices of many medical hardware/software items including the infamous assortment of cushions available. While I respect competition, you have to be amazed and amused by it in my opinion.  Cushions are a prime example. I have used ones that cost $500. US, but I use one that costs $40. US that works better for me to avoid pressure sores and is more comfortable.  The same applies to any of this.  Price is not a good indicator of value.

[Jennifer O'Brien]

For pALS who maintain use of one arm, this strap could allow hugging with two arms: https://www.today.com/parents/parents/arkansas-students-invent-tool-help-stroke-patient-hug-rcna16361

 

[Kris]

Has anyone been successful in paying the difference between what Medicare will pay for a manual Hoyer lift using a prescription and the cost to buy an electric/battery Hoyer lift?  The companies I’ve talked to in the Seattle area say it isn’t possible but the info I’ve seen online indicates it can be done. Thanks.

[Pete Caluori]

Hi Kris, check if your state has a hospice or home care service that you can use.  I was placed on the hospice service in my state and they provided a Hoyer lift for free, but I have never used it.  I’m now in Home Care, because the Hospice folks wanted me to croak in 6 months or less!

[Mary]

My husband, Bill, needs an I pad or personal computer that will work with eye movements or other means.   He still has his voice but it gets very weak during the day.   His hands and arms are all but  gone at this point.  ALS with Respiratory Onset is the diagnosis. He is still ambulatory but has a motorized wheelchair for resting his head and using the Triology.  What is available for him to play his computer games and read online????  Any suggestions are appreciated.

[Mike Cutter]

An eye gaze eyespeak device from Talk To Me Technologies

[stephen]

My ability to transfer is very dimfficult. Will appreciate input about a homer lift.

steve

[Nina]

Hello all – I have limbic ALS and now have no use of my legs. I use a Hoyer lift and a motorized wheelchair. I am very frustrated that I can’t travel because of the inaccessibility of public bathrooms. The “accessible bathrooms” work for a manual wheelchair but my motorized wheelchair is just too big to get close enough to the toilet. I can use a Hoyer lift in some hotel rooms but not in a gas station or rest area bathroom or most  overnight accommodations. There must be some way to do a transfer from my motorized wheelchair into a normal accessible bathroom. Very frustrated! This small thing keeps me from traveling. Please help!

[Nina]

To all the ladies reading this – I have been doing some research on the Purewick external catheter. You put the wick into place between your legs and it vacuums up the urine when you urinate. I’m just not sure how difficult it is to position the wick, and whether you can do that yourself without assistance. Also, what success have you had in motoring outside the house with the  Purwick container? Thanks!

 

[Kim Belden]

I haven’t used my PWC much since I bought it.  It’s time for service and new batteries since I will be using it more.

I called the company that sold it to me (Ability Medical Supply.). They said it would take 1-2 months to set up service and put in the new batteries.  I guess everyone needs two PWCs.  Fortunately, I can still walk and transfer so I ordered an ultra light PWC that folds and can be used for travel/short trips to parks, etc.

Is everyone having these long lead times just to get batteries.  I thought about buying them online and paying someone to install them.  They are in stock everywhere so I’m not sure why Ability is holding this up for so long.

They are paid by Medicare so I understand the approval process but I’d be willing to pay up front, then get reimbursed.

[Dagmar]

Anyone using new technology or mobility equipment that we should know about?

[Beth Rookey]

Hi Dagmar,

I have been using Dasher (https://www.inference.org.uk/dasher/) for 16 years to write anything I need to on my computers. It’s a free software download and there are 2 videos – a demo clip (https://youtu.be/nr3s4613DX8) & an explanation of the software development (https://youtu.be/ie9Se7FneXE). It took me an afternoon to figure out how to use it & I couldn’t write without it!

I also use a HeadMouse Nano (https://www.orin.com/access/headmouse/) for 2 years now. I bought it myself after borrowing one from my ALS clinic. I like it because I don’t have to calibrate anything, I drive up to my desktop computer, the HeadMouse picks up the reflective dot on my glasses & I can use my computer. I also use Point-N-Click (https://www.polital.com/pnc/), another free software download, that allows me to make selections – L/R click, double click, highlight/drag. You can get a button to plug into the HeadMouse to click the selection but that would mean I’d have to have it put in/taken out of my hand, which means I need someone around. The PnC gives me the freedom to get on my computer, without needing help!

These have helped me to continue to use my computer & stay in touch with family & friends! I hope it can help someone else 😊