How hard to push for a scooter or power chair?

[4tloml]

Steve has been sharing some of his great adventures since he's gotten his chair and they've gotten me thinking--but I don't want to hijack his thread. So, I'll ask here.

PALS & CALS, what is your opinion about how much I should encourage my PALS to get a scooter or wheelchair for traveling? I don't think he would qualify for a power wheel chair yet--he can still walk 1-1.5 miles with his AFO's and cane or walker, but it exhausts him and we are done for that day and the next. We are taking a lot of trips for sightseeing--going to places he wants to see. We're moving pretty slowly, which I don't mind, but as we have limited time, it seems like we could see a lot more if we could bring a scooter along. And we could do it without exhausting him. On our last trip we could only be out a few hours every other day with between days for recovery.

The dilemma here is his independence. I think he may feel he is succumbing to the ALS if he goes into a chair or scooter this soon, and I don't want him to feel that way. Yet we're spending a lot of time and money to get to places to be able to see so little. Then again, our time together is the most important thing to me, so I haven't said much along these lines. I feel torn...and selfish that I want us to do more by using a chair.

Do you think it's something I should bring up now? If so, what do you think would be the best approach? I don't want to dampen his spirits; I also don't want him to overdo it when we're out.

Thanks for any advice!
Cindy

 

[lgelb]

Cindy,
You are very eloquent. I think you should say everything to your PALS that you just wrote. The power of "I" statements as opposed to "you" is one guidepost for that conversation. I take it he doesn't participate here -- but you could show him some of Steve and others' posts -- and pics.

The short story is, exhaustion leads to fails and falls, compromising independence rather than preserving it. The selling point is, he can walk when he's up to it and ride when he can't.

 

[Gembead]

Go for it, my hubby borrowed a folding electric scooter for a day to see how he would go on a fund raising walk, it was great, we took his walker as well and he used both thru out the day, I rode the scooter when he wanted to walk.
We plan on something similar when we go cruising in October.
Love Gem

 

[affected]

I would say like Laurie does - show him some posts here, that thread of Steve's is a classic, show him the bear story

So many PALS think they are giving in to the disease by using a pwc when they are scoring a victory over it in reality! Avoiding wearing himself out, getting to do more, and being more independent is telling ALS it is not over yet!

I think that staying mobile as long as possible is a great thing. The way to do it is to conserve energy. Imagine for example that you take one of these trips. Every single day you can both go out and enjoy things together. You may still do half days, but he won't be so physically worn out. When at home or in a motel room, use his walking equipment, maybe each second day even have a little walk somewhere closer by. Avoiding the extreme exhaustion of being wrecked the following day is really important as those tired muscles just don't recover well.

Lastly, it can take quite a bit of time to get the pwc order through to the equipment arriving. If you wait until he really needs it and it then takes months to sort and arrive, he has a miserable wait. If you order now, what does it matter if he only uses it now and then for the first few months? Having things in place before they are needed avoids a crisis and we all know we have enough to contend with already without a crisis on top!

 

[Nikki J]

If you can get the power chair process started go for it as Tillie says. If not buy the scooter ( look for used) don't let a sales person put in through insurance as it will affect your ability to get the massively expensive power chair covered.
If he is like me he is starting to find that the fun expeditions are becoming more like obstacles to overcome
It is hard always to add a mobility aid but it is really fighting ALS and preserving function longer. Anything that affects us so profoundly the next day is risking accelerating things according to my neuro

 

[tripete]

If he is like me he is starting to find that the fun expeditions are becoming more like obstacles to overcome
It is hard always to add a mobility aid but it is really fighting ALS and preserving function longer. Anything that affects us so profoundly the next day is risking accelerating things according to my neuro

100% agree it is why I have asked to get one going. I can still walk and use a cane (when my hands can hold it) for just in case I start to wobble moments and help on stairs. But I get winded and fatigued so quickly, a few hindered yards, and then for the next two days I am down. I always describe it like doing an extremely heavy or long workout when you have not done one in years. Your muscles then ache for a couple days after.

 

[Nuts]

Here's another vote for starting the chair process now. Along with all the other good advice, tell him that you will be glad to park it in the garage with a blanket over it so he doesn't have to see it if that's what it takes to get his agreement since the process takes so long. Once he zips down the street and feels the wind in his face, he may quickly realize that it is returning his freedom, rather than stealing it.

If your husband's doctor writes the prescription and justification, the chair should go through. This disease is unpredictable enough and energy conservation is important enough that he doesn't need to be falling to qualify.

I wish you luck--you will find that his newfound freedom also means restored freedom for you. Oh, and there's something to be said for him being able to take his own lounge chair with him during your travels!

 

[gooseberry]

For scooters or even other mobility products there are chains of mobility products and services providers. They sell both new and gently used. You might want to consider this route

 

[hjlindley]

My chair is freedom. It allows me independence, keeps you from falling and is all around good thing. I would suggest you talk to your ALS social worker. Good luck with all of this.
Hollister

 

[MaxEidswick]

https://youtu.be/fPWr0tWzJ3s

 

[azgirl]

My local ALSA loaned me a scooter and I loved the freedom of exploring on my own. Got the pwc now and just got back from trip where I could go for long walks with whole group - they couldn't keep up with me!

Get scooter now.
Inquire about pwc. I started process before needed and was damn glad to have it 8 weeks later.

Bigger issue was how to transport once you acquire your equipment.

 

[tripete]

awesome Max

 

[Green Queen]

Hello world...this is Henry.
I cannot express to you how much I love Henry. He has absolutely changed my life.
At 42, being dependent on people to do everything, even simple things like going to buy a loaf of bread, was wearing very thin. On everyone. Being a bloke, (sorry fellas) Wayne could not understand why one trip to town a fortnight wasn't enough, or why couldn't we get that yesterday?
Life, especially with kids, is not that simple.
I can now go to appointments on my own, take Lucy to the beach, attend things at school during the day...whatever.
Freedom, independence, being able to do stuff AND cope the next day is...yep, you guessed it...awesome.
Henry is here to stay.

God bless, Janelle x

 

[Dusty7]

Cindy, I remember the stage where your husband is now... the ability to force yourself to do 1-1.5 miles in a day... and then the utter exhaustion for the next couple of days. Then I got my scooter (used). Nowadays I can't do more than about a hundred feet with my cane, but I have my scooter for anything longer. Yesterday I went to the new pool in the resort where we're staying, scootered all the way around looking for a nice shady chair. Then an hour later when the sun had moved, I scootered over to a different pool in the complex that I knew had more shade. When the 4pm rains arrived, I hid out in the recreation building at that pool until there was a break and I whizzed home. And because I never walked more than 50 feet at a time, I am not exhausted today.

Friday morning I plan to go to Disney's Animal Kingdom with my 3 youngest grandchildren (3, 5 and 7). (1-1.5 miles is nothing at a Disney park, especially with young ones.)

This is not giving in to the disease. This is living my life my way and to the fullest. Get the scooter.

 

[4tloml]

How can I ever thank you enough?! I took Laurie's advice and read to my husband exactly what I wrote and then every single one of your posts. (Max, you had him laughing--love it!)

He easily agreed to a scooter after that for our 3-week trip next week. I'll just rent one that breaks down so I can get it in and out of our small SUV. And he agrees we should request that the PWC order process get started at next clinic (Aug 7th). We also have an Alaska cruise coming at the end of July, so I'll order one for that.

I am reminded each time I come here that we are fighting this battle together. I am so grateful you all stepped up and won this battle for me--no blood drawn. I think Jeff felt a real comfort and encouragement in your words, especially the idea that he is not succumbing but triumphing when uses tools to stay active and alive.

Hugs to each and every one of you!