Is it time for a PWC?

[BlueandGold]

Hello friends. I hope you are all well, or at least hanging in there. I'd like your advice if you care to weigh in. I don't know why but I seem to be racing towards the finish line. Since I had the peg surgery in early December my progression is rapid. I'm now breathing hard after just one flight of stairs. My calves cramp when I walk and my legs are starting to shake as well. I think a PWC would assist with my breathing difficulties but I'm not sure I would be approved by Medicare since I can still walk. However from everything I've read it can take months to get the PWC.

Should I press my PCP, or Duke ALS clinic to get the process started?

Thanks for your input.

Vince

 

[Nuts]

Vince, yes yes yes yes. If your legs shake and cramp when you walk, it's time for a chair. You need it for safety and to conserve strength. Work through the ALS Clinic. D r B will concur, I'm sure.

 

[Nikki J]

I think in ALS if you are wondering if it is time for an assistive device it is! So yes, and I would go through Duke as they should know how to write it up properly to get it approved. I think there are people here who can tell you some of the key things to get it approved. I have a memory that you need to say it is needed in the house that it will not be covered if the reason is so you can go outside. Perhaps others can say if this is still the case?
Good luck

 

[Nuts]

I think all Vince needs to do is explain about the shaking, shortness of breath, and fatigue and the clinic will give him the perscription he needs. This is ALS../

 

[ShiftKicker]

Not sure how it goes in the States with regards to insurance, but I had the OT at my very first clinic telling me to get one before I thought I'd ever need one- to foster my energy, to reduce strain, and, to get used to the idea well before I had to depend on it. She keeps asking me if I want to get the process started each time I go to the clinic. I am positive your ALS center will word the prescription in such a way that there's no question you need it, regardless of if you're still walking.

I would think it would be better for it to be available for when you feel ready to use it and not have to wait a long time for one to come when you are finally in need. Does that make sense?

 

[Vincent]

If you are being prescribed one make sure to look at future needs. Things like power tilt, power recline and power leg elevation. Not things you need now but they only pay for one chair. I have been using a chair since the summer, I can still walk, but I still have energy when I get where Im going.
Vincent

 

[bigmark1954]

I say get the ball rolling NOW. ......before you can't walk much at all. I wonder if a walker with wheels might be handy for you. You probably have one already tho.

 

[BlueandGold]

Thanks Mark, Vincent and Shiftkicker. I do have a rollator. It is very helpful for trips to the store. I'll email my clinic tomorrow. See if I can get things started.

Vince

 

[swalker]

Vince,

I am an advocate of getting the chair early. It is what I did and what I recommend everyone do.

The benefits are many, including:
1. You still have the ability to adjust the chair to fit you rather than relying on someone else.
2. You get to know how to use the chair and navigate it around obstacles while it is still practical to get out of the chair and examine the situation.
3. My primary chair required quite a few trips back for repair. It was easier to arrange for this when I could get by without it for a few days.
4. You will need to figure out how to transport the chair (public transport, ADA transport, your own van). This will give you time to do that. It took me several months to figure it all out and buy a van.
5. Using the wheelchair conserves your energy. I can't emphasize the impact of this enough. Just sitting in my primary wheelchair allows me to feel better the next day. It has wonderful trunk supports. I don't have to use them, but I am fresher the next day if I do use them.

As a simple example, I needed to get a particular medical test where they wanted me to sit on a table completely unsupported and look up for about 15 minutes at a series of flashing lights. There is just no way that I could have done that. But, I was in my wheelchair. We moved the table and I rolled my wheelchair there. I hit the seat elevate and tilted the seat back a bit so that I would not have to look up. That made it a breeze to do the test.

Even though I can still walk a bit, I discovered that I can't be without a wheelchair. Since mine was in the shop a few times (sometimes for up to 2 weeks), I decided to buy a used chair as a backup. I then got a 4x4 wheelchair and now have 3 wheelchairs.

Because I have a wheelchair, I was able to get out of the house today and go for a "walk". There is no way I could do that on my legs.

I encourage you to start the process now. It did take me 4 months to get my primary wheelchair.

Steve

 

[gooseberry]

IMHO, Steve has been using his walker thinking he still didnt need his pwc. He has fallen a couple of times with no injury. In early January he was surprised when they told him he couldnt flex his right foot. Today he cant flex his left either. He was stunned. If you are even thinking you need it, you needed it earlier. Do it for your safety and to ease your cals worry.

 

[lgelb]

I'll pile on, Vince. By all means, start the process. Since you are affiliated w/ multiple clinics, if needed, work backward from whichever local (as close as possible) DME firm you want to work with. If you're not sure, dial 'em up. Just seeing how long it takes for someone to call you back can be revealing.

 

[BlueandGold]

I'm wondering if the PWC will be part of the competitive bid process for Medicare. If so, that will limit my DME providers (not like I've got a ton to pick from in my tiny state). Thanks Laurie.

Vince

 

[lgelb]

To the best of my knowledge, complex rehab chairs are not in the competitive bidding program, either round 1 or 2. Standard chairs are.

I went to the RESNA site to find certified specialists in mobility in WV, so you could see which agencies they work for where, and therefore which one(s) you might want to check out. You can also search on zip and such.

Best,
Laurie

 

[BlueandGold]

Thank you so much Laurie. So knowledgeable and so helpful!

Vince

 

[Ells]

Paradoxically, the PWC will give you more independence (though acknowledging progression sucks!!!)

Hope it's straightforward for you.