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Drewsmom

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Joined
Feb 2, 2014
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68
Reason
CALS
Diagnosis
07/2015
Country
US
State
usa
City
dixie
So the cervical fusion last week made no impact on my husband's neurological issues. It did however, enable him to be transferred to an inpatient rehab facility. He is on the "ALS" therapist team. They admitted that they have not ever had anyone with PLS before, so they have been doing their research. They are concerned because his progression has been in months, not years. Also he has clinical weakness and fasiculations which are not supposed to be part of ALS. So today they met with me and broke the news of the need for the power wheelchair. He does not need it now, but they wanted to go ahead and get the ball rolling. I took it much harder than I thought I would. I have been seeing the writing on the wall for some time now. But hearing it from other professionals, feels like a punch in the gut.

They also hooked me up with a durable medical company who is going to make a home visit and provide input about our home and access.

What did you do about a lift for the wheelchair? Did you buy a handicapped accessible van, or did you purchase the lift to add on to your vehicle?

So overwhelmed.
 
We searched high and low and looked at lift variations. Finally settled on getting a van that had been modified specifically for our kind of PWC. VA financial assistance made that a no-brainer.
 
> VA financial assistance made that

possible :)

watch out for the m300 -- it is too heavy for external lifts
 
We used the Permobil 300 and had a ramp on the side of the van. After we got the hang of it, it was easy for my wife to drive herself up the ramp, spin around and lock herself automatically into the passenger side.


Not all vans are equal. Check out the sliding door to ensure you can enter the van without ducking your head.
 
>Not all vans are equal. Check out the sliding door to ensure you can enter the van without ducking your head.

Ditto that! I only fit into toe Sienna/VMI, so used selection is grim ...
 
Ask how much the floor has been lowered. For some reason they don't lower them all them same. Mine is 14 inches I think. The more it's lowered the easier it is to get in. Think all makes can be lowered to this value
 
And drive it over speed bumps and uneven roads. A van that's been lowered couldn't enter or exit my current house.
 
It took us 6 months to get a wheelchair thru Medicare, so I agree that it's best to start early. Due to finances, my PALS couldn't get handicap van, so he was able to use public transportation. We called ahead for appointments with public transport so they could use the special bus.

Sorry for the gut punch. I sometimes forgot to roll with the punches too.

*hugs*
Laurie
 
We bought a dodge Se caravan and it is being sent to VMI to be converted so hopefully we will have it back in a couple of weeks/ will make our life easier that's for sure/ we are calling it the white knight
 
My PALS, Darcey, is the "Mom" part of our Mom & Pop business. And because I am also the primary caregiver, she comes to work with me most every day. We began using the PWC entirely (versus partial Electric Scooter use) when falling during transfers was becoming more and more of a concern. My [then] current van (2003 Honda Odyssey) could hold the PWC in the very back... but I had to use removable ramps to get it in there. And that was a lot of work and effort. And we were still having to transfer from the PWC to the front seat of the car. That's when we moved to a BraunAbility conversion van. We now have a 2013 Honda Odyssey (I really LOVE the Odyssey) with a 7" dropped floor (Braun also makes 11" drops) that has an automated side ramp. For our use, I back Darcey into the open mid-section of the car, turn and move her forward to the front passenger area (where she locks into place via a floor locking device). It has made going back and forth to work... trips to the store (Darcey loves being able to shop again)... visits to music events (huge Joe Bonamassa fans)... and to the doctor/hospital... ALL are much, much easier endeavors.

We were lucky. We bought our van used. It was created for a person who had VA privileges and came with the extras that the VA requires. It was a 2013 (and 2014s were available) and had 450 miles on it (yes... equivalent to barely a tank and a half of gas). We paid about $26,000 less than a new one would have been. And we couldn't be happier... even if we paid for this out of our own pocket...

Jim
 
It is overwhelming, I'm right there with you!

We are using a lift on the back of our pickup truck while we wait for the VA to approve a van and for the garage apron to be poured so we can be sure the one we want will have enough clearance (we're on a serious slope and the garage is cut into it), and I can hardly wait. The lift is a godsend if you have no other way to transport the chair, but the van will be much easier on both of us (as well as necessary when his ALS progresses to the point where he can no longer transfer by himself). Also, we always cover the chair when it's on the lift, but I can't help thinking that the van will do a much better job of protecting it.

I understand the punch in the gut--being mentally prepared for something and actually facing it are two entirely different things. Ordering the chair was difficult for both of us, but the look of joy on my husband's face the first time he raced up the street in it to show the neighbors was beautiful. Sometimes he doesn't even need a destination--just being able to move SOMEWHERE and not be exhausted or risk falling is a pleasure. I hope that when your husband's arrives he has as positive a reaction (we have to take what we can get).

I think our timing on the chair was good--I just wish we'd have moved more quickly on the bathroom...
 
seriously, get a van or use public transportation.. we bought our van on ebay and it was a great deal. it was a "totaled" and then rebuilt. not any problems o t of the ordinary and I have put 75,000 on it (came with 25,000). we have a Toyota sienna with a side electric ramp and manual tie downs. we use to use it a lot in the beginning but barely at all now. put all the miles on it by driving back and forth to work....by myself not with him. got my own car now so we are not running the van anymore except to doctors.
 
make sure they include all the things to the chair that he will need in the future, not just for needs now. you only get one so have everything covered.
definitely a van, there will come a time when he can not transfer himself in and out of the vehicle and I doubt if you could transfer him as dead weight on your own, so a van the chair goes into with him on it is a must.
 
When the time comes that he can't transfer on his own, a gait belt will help you be able to safely transfer him. There are 'how to' videos on YouTube that you can watch.
 
Is there anything I need to know about a rear entry van vs side entry? Which do most seem to prefer?
 
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