What do we do now?

[Suzanne27]

My husband was diagnosed on February 13, 2017. We will have our second clinic visit with the team on May 10. My husband has been using a walker since mid-March. Even with the walker, he struggles. His legs will wiggle and wobble, but not move. I am looking for advice. Who will suggest what we need to do next? Do I contact the ALS
Associaton? Do I get direction from the team during our next visit? It's hard to grasp what's going on and what to do. Thanks to all the wonderful people that post. I have gotten much info and support fro you all.

 

[Nikki J]

I am sorry to welcome you here but glad you have found us.

You will read the big rule is don't fall. Very dangerous. It sounds as if you should be asking to start the process for a power wheelchair. It takes time. You likely need to contact ALSA to see if you can get a loaner in the meantime.

At clinic I expect you either routinely see PT or are asked who you want to see besides the doctor. You defintely need to see them this visit. Sometimes AFOs ( ankle foot orthotics- leg braces are the answer but it sounds as if he might need to go right to the chair.

This can be really hard to accept especially if he is new to this but the chair can give freedom, safety and mobility.

Falls are really very bad. Injuries don't heal as they used to and a fall can put you down a notch or more than you never regain. Sadly, we have had PALS die from falls. I am sorry to be so brutal but it is true

 

[Suzanne27]

Hi Nikki,
Thank you. My husband started with balance and falls during the end of summer 2015. Now of course, things are worse. He has a very badly swollen knee from multiple falls on it. He probably needs to have it checked. He has hit his head twice in the past month during a fall. We will see the entire team (PT included). I wonder how much longer the walker can be of any benefit. I wish I understood our situation better.

 

[soonerwife]

So sorry to hear of your husband's dx Suzanne. You have found a great place for support. Feel free to ask anything.

It definitely sounds like he could benefit from a power wheelchair. It took us 4 months to get one for my PALS. It is coming tomorrow. We were offered a loaner in the meantime.

Not sure if your husband's legs are really weak or if he has drop foot? My PALS has drop foot and the AFO's helped so much.

 

[Nikki J]

It really sounds as if the walker is not the answer anymore. Those multiple falls say it is time for something different and it sounds like that is a chair. There is a faint chance that afos might help but I really doubt it from what you have just said

Is he going to fight the idea do you think?

 

[lgelb]

Hi Suzanne,
I'm sorry to hear of your husband's progression.

Let the clinic know you want to do a power wheelchair eval at the next visit so they can plan for that. But if there is anything not completely accessible about your home/yard (e.g. slopes, uneven surfaces, thresholds, narrow doors/halls/rooms, hairpin turns), a DME should do a home eval as well even if that is not routine for your area; if you're not sure, bring pics/measurements to the clinic visit for a common understanding. If you don't like the DME they recommend, you're within your rights to shop around, from PA to NJ to NY.

If he's at fall risk with the walker, there are ~$99 wheelchairs in drug stores as well. I would also contact your ALSA chapter about a loaner, as Sooner said.

Best,
Laurie

 

[swalker]

Like others have said, I am very sorry you need to be here asking these kinds of questions. But, rest assured that we are here to help in any way we can.

Also as others have said, it appears to be time for a Power WheelChair (PWC).

I know what it feels like. We don't want one and can easily convince ourselves we don't need one.

But, the reality is that we will all need one sooner or later. In your husband's case, it sounds like he needs one now.

There are many advantages to getting a PWC early. It is much easier to adjust the thing when you can get out of it. It is great to not have to be in it full time as you learn to drive. And, it gives you time to get a wheelchair van AFTER you get the PWC, so you can make sure the PWC will fit.

Before getting my PWC I had numerous falls resulting in sprains and broken bones (the worst was a broken elbow). Since getting the PWC (over 2 years now), I have not seriously injured myself in a fall. I can still walk about 100 feet. Using the PWC allows me to conserve my energy so that I am less likely to fall and can do more during the day. I believe using the PWC has slowed progression for me.

My doctor recommended the PWC to me and recommended where to go for the fitting. He talked to me about getting a PWC for a year before I actually made the appointment. I am very hard headed, sometimes to my detriment. I encourage others to learn from my mistakes.

I have another post with lots of information about getting a power wheelchair. You can find it at www dot alsforums dot com/forum/tips-tricks-gadgets/30826-things-i-have-learned-about-wheelchair.html

Steve

 

[Suzanne27]

My husband is still wanting not to use the walker. He "doesn't want to become dependent on it." Lots of issues to deal with.
Thank you!!

 

[Suzanne27]

Thanks so much Steve. Great points. I'll check out your post, too!!
Suzanne

 

[Suzanne27]

Hi,
Four months?? I'm getting very worried.
Thank you!
Suzanne

 

[Suzanne27]

Hi Laurie,
I'm not sure what a DME is. Thank you!
Suzanne

 

[soonerwife]

Hopefully our case is not the norm with getting the pwc. DME is durable medical equipment. Sorry for the abbreviations. We forget not everyone knows what they are.

The company we ordered our chair through came to our home and looked around to make sure we didn't have any areas of concern, ie tight spaces, thresholds, etc.

 

[Firefighter58]

Suzanne I had the same attitude as your husband, my walker is fine I don't need no dam wheelchair . But of course my wife won and I ended up with a wheelchair, since the moment I sat in it, it has become my best friend. Some days I will sit in it all day because it is so comfortable.
Al

 

[Suzanne27]

Thank you Al!
Suzanne

 

[Suzanne27]

Thank you!!
Suzanne