How long before a wheelchair?

[RICHARD2008]

Diagnosed 1/29/2013. I currently have double foot drop and need a walker or two canes to get about. In order to make some living arrangement decisions i need a best guess on how long before i am in need of a wheelchair to get about. Any opinions would be appreciated.

 

[hn7609]

If you are currently using a walker.......then you need a wheelchair NOW. When I got to the point of needing a walker it was just a few months later that I had to toss in the towel and get a chair. If you still have good arm strength then a simple manual chair is a good place to start. I got a used one on Craigslist very cheap and used it quite a bit untill I got the power chair that I currently use. Get in touch with the local ALS support group, they will have loaner equipment that you can use. No doubt they will have lots of wheelchairs.

I put off the chair as long as possible & in hindsight that was a stupid move. Using the walker is a total body workout & it takes alot of energy to get anywhere. The chair will save you alot of energy that can be used for other things in your daily routine.

Good Luck

 

[sadiemae]

If you are thinking about it the time is NOW. It can take several months to actually get your chair. Also, falls of any kind seem to speed up progression. I would also suggest getting a feeding tube soon. Eventually you will probably need one, and it is so much easier if you get it early.

 

[notme]

HI

If you have any arm weakness at all--those canes aren't going to be of much use at all very quickly. I've found that since my hands have gotten so bad, I can't use my cane at all anymore and have to use a walker.

I don't have footdrop-but I have to use a scooter if I'm going to be out and about for any length of time. If for no other reason than to conserve energy.

If you're moving--get wheelchair access immediately. Also, it takes forever for medicare to approve them--so the doc needs to get the order in sooner rather than later for you.

Please be careful. Falls are very, very bad for Pals

 

[Cricket]

Hi!
I agree with the others...even thought you might not use a wheelchair right away, it is a really good idea to have one on hand (especially since the progression can be unpredictable). My rule of thumb is "safety comes first". I used borrowed a manual wheelchair for a bit when going out but quickly ordered my pwc. I had it about 3 months before needing to use it. I was glad to be a little ahead because it took longer than I had anticipated before getting it. Once i had the pwc, it gave me back some independence. You might want to look into it.
Good luck!

 

[patrick123]

hi everyone,
i was diagnosted 09/10/12 and today i got my pwc it is a loaner from the als assoc. i can still walk with a walker but is does take alot of enegy and very slomoving. at first i thought i would a little self consience about it. but is wasn't to bad. l i am still a student driver and at work i didn't run over anyone lol. overall i'm glad i got it

 

[momap53]

Get it now. Falls can be deadly. An injury can really set you back.
Be careful of a manual chair, you don't want to use up your arm strength.

 

[Nighthawk]

Diagnosed 1/29/2013. I currently have double foot drop and need a walker or two canes to get about. In order to make some living arrangement decisions i need a best guess on how long before i am in need of a wheelchair to get about. Any opinions would be appreciated.

One has to understand himself or herself when safety MUST come first before "independence" when it comes to ALS.

Having "foot drop" on BOTH FEET, as you posted makes it very, very dangerous for you to ambulate even with a rolling walker at home.

Having a FALL is one of the more scariest and dangerous incidents that can happen to a PALS.
You might end up with a fracture of your skull, broken hips, broken ribs, broken arms, broken legs , and...the list goes on.
All of that above or even just one of those fractures could worsen your condition and even...speed up your ALS progression.
Furthermore, having ALS is by itself overwhelming, let alone a fall in these circumstances.
Even for healthy people, falls are extremely dangerous.

A power chair (PWC) is a MUST for you. The sooner you get it, the better. They are quite expensive even with Medicare because they cost around $22,000 and, although Medicare covers 80%, the rest of the money must come out of your pocket.

Although, if you are short on funds, your local chapter of the ALS Assoc. can loan you one from their "Loaner Closet". You or your CALS just have to contact them.

I'm still ambulating but, it's because it's my left foot the one that has been affected by the "foot drop" so far...
My right foot is still as strong as the foot of somebody who is healthy but, I'm not procrastinating on getting a PWC because I know now that eventually I am going to need it.

HTH

 

[jacquie]

Hi Richard,
I also have footdrop in both feet. As recently as August I was still walking fine, even without a cane. Now I can barely navigate with a walker, and then only if I am wearing my AFO's. I hope you have those-they are a blessing. (ankle-foot orthotic) I am getting a manual wheelchair on my own because my insurance will only cover one wheelchair with ALS and I need to save for a power w/c. I am renting a light weight one that I can hopefully still get in my car on my own. I am still pretty strong in my arms so figured I would rent month to month to see how I do. I went to a facility that evaluated me and measured me for a chair, and she is helping me to work with a w/c rep. to rent one. Best wishes to you.

Jacquie

 

[bob_s]

Insurance says I can't get a pwc if I can still walk. Any advice on how to advance that process so I have it when I will need it?

 

[Cricket]

Hi bob s
Is there an ALS clinic near you? Would it help if you obtained a letter explaining that your legs are unreliable, falls are unpredictable, dangerous from your OT (assuming there is one at your clinic) and a prescription for a pwc from the DR?
Hope this helps

 

[momap53]

What Cricket said. Document any falls and notify your doc.
Our PT at ClInic superviSes the wheelchair process.

 

[bob_s]

Thanks. I'll ask my doctor. I had a bad fall 2 weeks ago, and have regained strength some but am still unsteady with the walker a lot of the time, besides walking slower than paint drying. And I can't operate a manual wheelchair with one working arm.

 

[Cricket]

Good luck...i really hope everything works out for you.

 

[hjlindley]

I can still walk, but not very far and not very steadily. After 2 falls, which luckily cause no injuries, the neurologist at my ALS clinic prescribed the chair. I'm still getting used to, but it makes my life a whole bunch easier and safer. My husband is still employed through his insurance paid for it.
Good luck
Hollister