paying for equipment

[Lynda]

I went under the Equipment and Supplies stickie, and the "document" listed there does not load, so I was unable to gather information.

So far, we have not yet had to purchase any ALS-related equipment. The first item on our list was a walk-in shower with seat, as showers seem to be where Michael is in most need of assistance so far. Found out yesterday that our insurance will not cover this. Michael's HR Dept had told him that it would so we're a little disappointed.

So, we're left wondering how to pay for this and other equipment that will become necessary.

Are there any websites or resources that you can recommend we try?

Thanks everyone.

 

[affected]

Not sure what 'document' you mean.

The sticky there is just a forum post?

I'm sorry that already you have these hurdles with equipment you need. I hope someone can help steer you in the right direction, I'm never any good at these ones because I'm in Australia so our system is totally different (and different in every state).

 

[Lynda]

There's a stickie called Equipment and Supplies. Within that is a link called "document" which is referred to as being updated often with new information. When I click on the link, nothing happens. Maybe I wasn't clear enough in my explanation.

I appreciate your input. Thanks, Tillie.

 

[affected]

Oh, I found it Lynda!

I looked at the sticky under the used equipment forum.

This one was created by Laurie (lgelb) and is her own personal web page, hopefully she will read this (or you can send her a visitor message by clicking on her name on the sticky) and tell us why her site is down

It seems from the message I see there however that wikispaces is down rather than Laurie's actual page, so with luck it will work again soon.

 

[Nikki J]

I just checked the link and it worked. It took a second or two to load but not more than that.
Medical insurance generally pays ( after deductibles and with copays) for durable medical equipment like power wheelchair, braces, hospital bed etc to buy or rent

It sounds like you are describinga home renovation and the only things I know that pay for that are the veteran's benefits and some long term care policies allow a certain amount of benefit to be spent to make a home accessible. You could see if your local ALSA might have any resources for a grant to help with the cost

 

[Lynda]

Thank you!

 

[nebrhahe53]

Ask your local ALS/ MDA chapter if they have loaners. We have gotten, PEG supplies, braces etc from them for no charge. They even have wheelchairs and computers sometimes. all they ask is that you return them when they are no longer needed.

 

[lgelb]

The link is http://impatientcare.wikispaces.com that adds on to the equipment sticky. I didn't realize it was down or slow today, but it appears to be back up.

The only payor I know of that pays consistently for shower/toilet stuff is the VA -- someone can correct me if they know otherwise. A commercial payor considers showering a "convenience," not a medical necessity since there are bed baths and wipes.

I would not buy a walk-in shower, exactly, since a shower chair with wheels doesn't really mesh with any kind of built-in seat. If you can have a wet room, Tillie and others have ideas around inexpensive designs. If not, and you have a threshold leading into your shower, you may want to consider a ShowerBuddy or depending on how advanced things are, a tub slider or bath lift might work for now. If you are able to renovate, of course, a roll-in shower is the gold standard.

Lynda, is Michael going to be on Medicare or a commercial plan as primary insurance for now? And, I'm sorry, how much mobility does he have/what are you going to need next under that insurance?

We had a Hoyer loaner throughout, for which we bought the slings; got some reimbursement for the bed we purchased (selected it/ordered it ourselves, then got doc to write rx); went totally through insurance for the power chair and suction machine (the latter we didn't use much, and if I hadn't been busy, I'd have bought that ourselves since the "rental" was ludicrous). We purchased our own used BiPAPs. Of course, if you end up needing a CoughAssist, PEG, things like that, insurance is the way, apart from the classifieds in the equipment thread here.

I hope the sticky and other info help, but we're all here for whatever questions you have.

--Laurie

 

[Lynda]

Michael is still working, Laurie, so we are on Anthem, his insurance through work. He's fully mobile at this point. His arms have been highly affected and he has limited range of motion in one, better in the other and is very weak and has lost the most muscle tone in that area.

Right now, we have a full tub with shower heads. The bathroom is pretty small. Because he gets so weak in the shower, we figured that a walk in tub/shower with a seat would be best for him. I'm beginning to think that the plan will be modify as we go. Our house is really small. I have no idea what we're going to do when things really start to spiral downhill. Although I can certainly clean out the dining room to move in a hospital bed, our house won't accomodate a PWC. We had just refinanced two years ago, and have zero equity in the house at this point, so selling it and getting something more handicap friendly is not an option for us. Believe me, it's all these thoughts that keep me up all night.

 

[Mtzu]

Our house is really small. I have no idea what we're going to do when things really start to spiral downhill.

We are in a similar situation. It's a bit overwhelming. We know we need to get ahead of the curve but don't really know where to start.
-Michael

 

[Nikki J]

I am not sure what you meant Lynda by modify as you go. I certainly understand that you can not necessarily do everything at once. But when you do modify something I hope you are planning to do it in a way that will work for all the coming stages? And Laurie is right about not wanting a built in seat in a shower. If you can make your tub into a roll in shower that would be optimum. If that is simply not possible I have seen a free standing shower set up that could go in another room. One of the PALS in my FB group had one and recommended it ( though the PALS was not the one who had to handle setup)
For now if he needs to sit is it possible to put some kind of plastic seat in there? When I had a broken bone I had to sit while showering and brought in a small plastic lawn chair which worked. Depends on the width of the tub and perhaps the size of your husband
Oh and tip for shower fatigue. Afterwards instead of trying to towel dry have him wrap himself in a thick terry robe. It does most of the work and he can rest

 

[Atsugi]

We found a roll-in shower at the YMCA and went there once a week for showers.

 

[lgelb]

If it is the arms primarily weak now, we had a swiveling shower stool (powder blue, a common model, I think). Or, as Tillie says, any little plastic chair.

You certainly don't want to put a lot of money into a house that can't accommodate a power chair -- and I have to ask, have you really measured and all that? Or is it steps? Or what? What about a Hoyer? It's really easier to think about equipment when you know where it will be used.

The thing about moving in a hospital bed is that would normally be around or not long before the time someone w/ arm onset might need a power chair -- at a guess.

 

[lgelb]

Sunstruck today -- gave Nikki's suggestion to Tillie, apologies!
Anyway, what I also should have said is if you can't sell the house, perhaps rent it out, if it's really not going to work. Since house-swapping can take time, something to consider.

 

[affected]

Ha, I wondered how I had been that brilliant and thought I must have been here in my sleep

If you can get a good OT to come and do an assessment with you I'm sure you would get valuable advice rather than trying to figure it all out yourself.

We were lucky to have a great OT who did several visits and taught me to use all the equipment as we put things in place. She help work out some simple and cheap solutions. These really worked well as it turned out that Chris was rapid progression so renovations would never have even been completed in time had we tried that path.