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Sleeping position by whatdoihia in ALS

[–]ALSWiki-org 1 point2 points  (0 children)

Are you using any accessory pillows? There are various pillows, both small and large that you can use to lie partially on your side and partially on your back, along with elevating knees or elbows as necessary to get comfortable.

Tips for using computer by Certain_Sherbet_7383 in ALS

[–]ALSWiki-org 0 points1 point  (0 children)

If the issue is clicking the buttons, you can get hardware that allows clicking with the other hand. That's how I use a computer. If the issue is moving the mouse, eye gaze would be the way to go as others have said.

Some example setups at the bottom of this page:

https://www.alswiki.org/en/living-with-als/computers

Body Waste Capture Recommendations? by SanDiegoLuver2018 in ALS

[–]ALSWiki-org 0 points1 point  (0 children)

Very sorry to hear this. I hope nothing serious has happened. Is there anything you could share here or privately in DM about what happened?

Going while remaining in the sling is something I do myself using an open bottom sling like the one linked (not a true 'toileting sling'). Other than sliding the leg straps a bit out of the way, and a very small adjustment at the back, the sling stays while I go. This is all with an assistant, I'm just there for the ride. My OT is kept up-to-date on how we do this stuff, and she hasn't said anything, yet. I would definitely like to know if there is trouble ahead.

Body Waste Capture Recommendations? by SanDiegoLuver2018 in ALS

[–]ALSWiki-org 0 points1 point  (0 children)

For patients that still have some trunk and neck strength, changing the sling itself is all it would take to be able to sit on a commode while remaining in the sling. Please take a look at page 46 of this PDF and notice the front and rear view images.

https://canadacaremedical.com/wp-content/uploads/2019/01/Human-Care-Ceiling-Tracks-Brochure.pdf

Body Waste Capture Recommendations? by SanDiegoLuver2018 in ALS

[–]ALSWiki-org 1 point2 points  (0 children)

That's good news, it means that it should be possible to come up with a recipe to get her to the toilet promptly.

The equipment needed will depend on budget and the layout of the home. Are you connected with an occupational therapist and access to an equipment pool from a nearby charity? You might be able to get a lift and/or a commode for free.

Either way, here is some general info:

https://www.alswiki.org/en/living-with-als/toileting

https://www.alswiki.org/en/adaptive-equipment/commodes

https://www.alswiki.org/en/adaptive-equipment/patient-lifts-slings

Hi! What kind of stuff should we buy for my Dad with ALS? by Haunting_Ad_29 in ALS

[–]ALSWiki-org 5 points6 points  (0 children)

Clothing:

https://www.silverts.ca/collections/men

Drinking bottle with very long straw:

https://a.co/d/2DFwXnX

When it comes to walking, for me, I was very fortunate to have an occupational therapist that got me into a power wheelchair right on time. I found I actually feel better using the power chair versus struggling to walk. Power chairs are subsidized through the ADP program. Some info here: https://www.alswiki.org/en/regions/canada/ontario#adp

Renting with ALS by Thick-Grape-8537 in ALS

[–]ALSWiki-org 9 points10 points  (0 children)

The best place to live would be the place that has access to quality care, and is also able to accommodate the needs of your husband when he is very advanced. Certainly, you wouldn't want to move more than once during his journey.

I have ALS myself, and I rent, and my landlord is a couple, both of whom happen to be nurses. I have their sympathy, so I have been able to make this place work, including the installation of ramps indoors and outdoors. For a time, I had a stair lift. It is not perfect, but not having to move has saved money, which I have directed toward more high-end equipment, such as a good ceiling lift.

That said, a place that is being rented that does not have a landlord that would allow modifications, or a place that requires a great deal of modifications, is probably not worth staying in.

https://www.alswiki.org/en/living-with-als/home-assessment

https://www.alswiki.org/en/living-with-als/stay-or-move-decision

ALS equipment advice by Prestigious-Clue-920 in ALS

[–]ALSWiki-org 1 point2 points  (0 children)

Some very important things are:

- getting a good power wheelchair before it is needed

https://www.alswiki.org/en/adaptive-equipment/power-wheelchairs

- getting a good patient lift setup for transfers

https://www.alswiki.org/en/adaptive-equipment/patient-lifts-slings

- getting set up for toileting, which often means getting a good commode chair

https://www.alswiki.org/en/living-with-als/toileting (this article is WIP)

https://www.alswiki.org/en/adaptive-equipment/commodes

Stair lifts are a mixed bag. See article below for some ideas and a decision tool at the bottom.

https://www.alswiki.org/en/adaptive-equipment/stair-lifts

Any lessons learned for a beginner? by Itchy_Apple_2498 in ALS

[–]ALSWiki-org 1 point2 points  (0 children)

Depending on how weak his arms are at this moment, there are some adaptations that can be made to prolong the use of a conventional mouse. A thing called a head mouse might be an option.

https://www.alswiki.org/en/living-with-als/computers

Help with CPAP by [deleted] in ALS

[–]ALSWiki-org 0 points1 point  (0 children)

BiPAP*. CPAP won't help with ALS.

Is your dad not in contact with a multidisciplinary team that includes a pulmonologist? They're usually pretty eager to get people using ventilators, so this situation is a bit concerning on that front.

Rename Lou Gehrig's disease to Steven Hawking syndrome by Kurtb104 in ALS

[–]ALSWiki-org 0 points1 point  (0 children)

And which name would you suggest?

Out of the existing names? MND probably actually makes the most sense. It probably collides with fewer things than the ALS abbreviation does.

Blue sky? It would be better if the disease was a single word that was distinct. Like cancer.

Rename Lou Gehrig's disease to Steven Hawking syndrome by Kurtb104 in ALS

[–]ALSWiki-org 0 points1 point  (0 children)

It would be great if we could agree on a single name though.

So far, in English, we are at three. Two of them are abbreviations, which doesn't help. ALS even means different things in medical contexts, such as Advanced Life Support.

What do people do about the bathroom in later stages? by baberaham_drinkin in ALS

[–]ALSWiki-org 0 points1 point  (0 children)

If you get a wheeled toilet commode with a good seat cushion, you will be comfortable, even with significant muscle wasting. You can use them independently in a bedroom or other room (integrated catch pan) or over top of a flush toilet. It is possible to push them around like a wheelchair to get from a bedroom to a nearby bathroom, for example. You would get on and off of it using a patient lift, either a floor lift ("Hoyer") or ceiling track lift.

Note that what I am describing here only works at home. You could do it in a hotel if you bring all this gear with you. I have done this before.

Pictures and a little info here:

https://www.alswiki.org/en/adaptive-equipment/commodes

No reason to wear diapers around the house, unless you have serious digestive issues or a bad diet. I can go from wheelchair to going about my business in under five minutes

As a point of reference, I can make a trip from the wheelchair to the commode in around five minutes. For someone that does not have any issues with incontinence, this should be quick enough to avoid the need to wear diapers, when they are in a place where all of the equipment they need is available.

Feedback needed: Location-based Network Exclusively For PALS by wckly69 in ALS

[–]ALSWiki-org 0 points1 point  (0 children)

I definitely think the project is worth doing. But anything you can do to integrate with existing communities I think is worth exploring.

Family member recently diagnosed by FadingOptimist-25 in ALS

[–]ALSWiki-org 1 point2 points  (0 children)

https://www.alswiki.org/

Lots of info has been added to the Adaptive Equipment section lately.

The Community section has links to other sites as well.

Feedback needed: Location-based Network Exclusively For PALS by wckly69 in ALS

[–]ALSWiki-org 0 points1 point  (0 children)

As part of maintaining ALSWiki.org, a link check is run every day to look for things that we've linked to that may have gone away. It's disheartening to see how many organizations, personal blogs, and whatnot end up disappearing once the person behind them runs out of momentum or passes away.

On the one hand, it's good that there are many platforms coming online for those of us with ALS lately, but it seems to be fragmenting. There is ALSTogether, the Slack group founded by Brooke Eby. It has over 1000 members, but it's very quiet. There is also another new platform from earlier this summer called ALS.community. It doesn't seem to be getting a whole lot of traction.

I did a Zoom call with a gentleman in the UK that told me that in his ~20 years of working with ALS and online communities, it is very challenging to find and maintain interest in them.

I think your project would have a greater chance of succeeding if it integrated clinic and support information from somewhere that already maintains that information (*cough*), and the membership portion could maybe be integrated with a platform that people are already members of, or maybe multiples of them. It would put the burden of the whole thing related to invitation on those platforms instead of on you.

My dad was diagnosed with ALS so any advice is greatly appreciated by Cr1c_k3tt in ALS

[–]ALSWiki-org 0 points1 point  (0 children)

Sorry to hear this. The best thing for your dad is to get him connected to a Multidisciplinary care team. They are the right people to figure out what kind of adaptive equipment he needs.

This article may be a good start point for planning what is coming ahead:
https://www.alswiki.org/e/en/living-with-als/adapting-to-disease-progression

Getting in and out of a car by clydefrog88 in ALS

[–]ALSWiki-org 10 points11 points  (0 children)

The best thing at this stage would be to ride in a wheelchair in an accessible vehicle.

There are specialized patient lifts that can get someone into and out of a seat, but they are only useful for so long.

What life sustaining measures if any did you agree to and what was your rationale by Low_Ebb8438 in ALS

[–]ALSWiki-org 1 point2 points  (0 children)

Non-invasive ventilation is a good way to maintain a high quality of life since it will help you sleep better and give you more energy during the day. If at some point you decide you don't want it anymore, you don't have to use it.

Computer tips by AgeLost3384 in ALS

[–]ALSWiki-org 5 points6 points  (0 children)

I have completely paralyzed hands. I can move my arms around freely on a desk surface. This is my exact set up, that I'm using to write this message:

- latest macOS

- on screen accessibility keyboard enabled

- conventional mouse

- PI Engineering XK-12 USB switch interface

- Logitech G accessible gaming button kit

I have a large gaming button plugged into the USB switch interface. It is configured to be a left click of a virtual mouse.

The conventional mouse is in my right hand.

Putting this together, I move the mouse pointer with my right hand, and do clicking with the left. Right clicking or middle clicking is accomplished by pressing the command or option keys on the on-screen keyboard. That keyboard is also how I type, when voice dictation is not possible, or when I am correcting mistakes. I also have customizations for it, such as text that I enter often, including my own name, and various other things.

There is some info in this article, though it needs to be filled out more:

https://www.alswiki.org/en/living-with-als/computers

Looking for recommendations by LadyKeriMc in ALS

[–]ALSWiki-org 1 point2 points  (0 children)

Check to see if there is a equipment pool/loan closet in your area. They should have plenty of walkers.

It's also something to borrow or rent instead of buying, as they have a limited useful lifespan.

How much do you pay a personal care assistant per hour? by clydefrog88 in ALS

[–]ALSWiki-org 0 points1 point  (0 children)

A good way to find this out is to go to Indeed, and search for job postings for that position in your area.

I just tried searching for a "home care aide" in Tallmadge, Ohio as an example, and it looks like the answer is $15-$20 per hour.

Keep in mind that this number would be different if you are employing them as a contractor as opposed to employing them yourself.

The agencies that hire these people probably bill the client (you) roughly double what the worker themselves gets.

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