Looking for transportation/van advice

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lindyazmn

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Hello everyone. My husband was diagnosed with ALS in May, 2020. The progression is fast. His SVC test result dropped to 40% (as of 12/11/20) from 72% in September, 2020. (We were doing screening for admission into an experimental drug trial, but the screening was halted due to the low score...)

Besides the overwhelming grief and continued sense of "this can't really be happening...", I am trying to get really practical. We have a Prius and my 6"3" husband has had increasing difficulty getting in and out, even with a transfer belt, etc. On another thread, a smart CALS said that getting an accessible van should be on the list. I have done a little research, but I'd appreciate hearing from people who have lived this. I'm confused about what we might need, and I'm wondering what the various considerations are. He'll be in a PWC soon, probably, but if we get a van with a ramp, would he still have to transfer into a seat? Are those two different things? Getting the WC into a vehicle vs. getting securely seated? Is there a way to be in a WC and still be able to sit on the front passenger side of the vehicle? Either in a WC on the passenger side, or equipment that could get him into a seat? I still don't know what I don't know. Thanks in advance for advice and information.

We return to the doctor on 12/14/20 because the doctor was so concerned about the rapid progression. I can't stop crying.

Lindy
 

Nikki J

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I am so sorry.

there are lots of threads on vans so do a search so you can learn from past members too.
however to answer although pals sometimes transfer to a regular seat at first that usually becomes difficult and it is better for both of you if he stays in his pwc- less stress and strain and more comfortable.

it would be possible to remove the passenger seat and you may find a van like that already. the vans I have seen though have the wheelchair space in the area behind the front row. there is a need for tie downs as well as space so converting would be more than just ripping out the passenger seat. He also would need to be somewhat is back of the driver to have space for tilted legs.
 

Jrzygrl

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My DH was 6'2" (with a long torso, so he "sat tall") and he had a Permobil F3. The sales manager from MobilityWorks was able to bring several vans to our house for us to try. The only one that worked for us was a Dodge Grand Caravan with the Braun XT conversion. For a pretty long time, he parked his chair and rode in the front passenger position, with a Q-straint system. Later on, he preferred sitting in the back so that he could recline and raise his feet if he wanted. The Q-straint system allowed him to be in either position.

Our van had both front seats that could roll out. He was not able to drive, but if your DH is, you can talk to them about modified controls.
 

swalker

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Here are some thoughts, which I have expressed more thoroughly in a variety of other threads. For reference, I am 6' 3" tall.

1. Do not buy a van without making sure your husband and wheelchair will fit into it. That means get the wheelchair first. Then you can make sure it fits in whatever van you get. I recommend getting a wheelchair early for many other reasons. If I was in your shoes, I would get the wheelchair immediately. Note that it took 4 months to get my first wheelchair.
2. Most minivans will not fit a 6' 3" rider in a large power wheelchair. I have heard that some Honda can as well as some Chrysler Fiat minivan conversions will fit taller riders.
3. Wheelchair capable minivans have limited ground clearance and very limited cargo capacity (both volume and weight).
4. When I was looking, a forum member suggested a full size chevy van. Despite my antipathy for GM products, that is exactly what I wound up with. We have put about 120,000 miles on it and I love it.
5. I still transfer into the front seats, but can safely ride in my wheelchair if I choose to. I recommend getting a van that allows this flexibility.
6. These things are stupidly expensive! We bought ours well-used (over 80,000 miles) and thus paid a very reasonable price.
7. When the time comes to replace our van, I will consider a Ford Transit, Mercedes Sprinter, or another Chevrolet Express/GMC Savana.
8. You need to decide about side entry vs rear entry. I prefer side entry and others prefer rear entry.
9. I want to be able to operate everything myself. Therefore, I want power doors and a power lift/ramp.
10. There are ramps and there are lifts. I am fine with either, but I have heard that some prefer a ramp. I have a lift.
11. I think the fewer modifications to the vehicle, the better. Some have lowered floors, raised suspensions, and kneeling features. The only modifications my van has are the actual lift itself, the EZ Lock locking base for the wheelchair, and the special seatbelt for when I am sitting in the wheelchair.

Here are things I want in a wheelchair van:
1. It must comfortably fit me in my wheelchair
2. It must allow me to transfer to the front seat (for better view) or ride in the wheelchair
3. I would prefer not to have to recline the wheelchair to get it into the van
4. It must have a locking system like an EZ Lock or QLock
5. It must have reasonably good ground clearance. Enough so that speed bumps are not a problem
6. It must have doors to the second row seating area on both sides. Most full size vans don't, but some do
7. I would like to be able to see out while seated in my wheelchair
8. I live where it snows, so would like all wheel drive or four wheel drive
9. It must hold at least 2 wheelchairs. We travel a lot and I generally take 2 wheelchairs with us (one regular and the other an off road chair)
10. It must have power doors and a power lift/ramp so that I can be as independent as possible.
11. I must be able to get it serviced locally without much hassle
12. I would like it to fit in my garage.

Good luck figuring out what will work for you. It took me a bit of research and throwing out a lot of preconceived notions to get to a solution that has worked well for us.

Steve
 

vltsra

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Lindy,

We went through the Ability Center here in San Diego. I think they have a branch in AZ. I spoke with the vehicle manager and he had a number of vans to show me. I had to wait until we got the PWC and the elevator in our house finished, but he called me when he got a used vehicle that he thought would fit our needs. We bought it and I'm glad we did. We don't use it as much as I had hoped (thank you COVID) but I can get my PALS to the dr. or out for other things he needs or wants.

The van has a removable front seat which we took out, and tie downs. It came fully equipped, and the representative at Ability Center showed me how to use the Q lock tie downs. We've gotten very good at it and it is not hard. My PALS is seated in the front seat just as if he were in a seat. No need to transfer him.

As for crying every day, I went through that too. I started on an anti-depressant for the first time in my life. I would venture to say that a lot of us are on some sort of anti-depressant. It helped me to stop crying and deal with my PALS needs one thing at a time. My PALS' progression has been generally slow, but at one point he seemed to lose function very quickly so I understand having to react to so many different things all at once. This forum has also been invaluable to me.

Hang in there

V
 

Nuts

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Steve made some great points. Along with the vans he mentioned, the Ram Promaster would comfortably fit a tall man. We had one, with a lift and two sets of tie downs for the chair so we could carry an extra. The mini vans have the convenience of being able to have roll out front seats so your PALS can ride (in his chair once he can't transfer) up front or in the back--but they are going to be very crowded for such a tall man. The larger vans, like the ProMaster, have a lot or room but the front seats and back are not on the same level, so you cannot roll the chair up to the passenger position. We used the minivan for a couple of years before switching to the Promaster. As for lifts vis ramps--I think the taller vans require a lift. With a shorter minivan (the floors in them are actually lowered to do the conversion), the ramp is all that is required and is faster than using a lift. As Steve said, you really need to try driving that chair into several models, and be sure to position it and tilt/recline all the way back to make sure there is room for that. At some point you will have to have him in that tilted position to transport him.

Oh, and I'll second the local servicing if possible. Sometimes you are just stuck, but if I found two that met all of my needs and most of my wants, a local dealer would definitely be the deciding factor for me.

After rereading your questions, an accessible van means you can get the chair into it and secure it so that he can ride in the chair. As long as there is another seat in the van, he can certainly ride in the seat as long as he is able to transfer and sit up without the support of the PWC.

One more point about the larger vans (like the Sprinter or less expensive ProMaster)--if you get the tall versions to accommodate your husband, you will enjoy the advantage of being able to stand straight up while assisting him, and that will save your back. Mine did not have sliding doors on both side (the earlier minivan did), but it was so large that I could walk all the way around his chair to reach anything I needed to.


I'll also second V--some things are just too hard to bare without help. A CALS has very little time for help, so antidepressants also saved me. I lost my husband two years ago and have tapered from 20mg to 5. I still can't get off that last five, but perhaps after the holidays when the sun is shining again and the COVID vaccine has been widely deployed.
 
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ReginaS

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My partner was fast progression too. Once we had the power wheel chair we understood the necessity of a van. The local ALS society social worker referred us to a business close by that gives ALS patients special deals: Older used vans with a good service contract and once we did not need the van any longer they would buy it back. The van was old and had a bunch of miles. The wheelchair fit in the passenger side and also in the 2nd now.

The ALS progression was so fast that longer trips became cumbersome after maybe 2-3 months. PALS was most comfortable at home.
When we bought the van I asked the seller if they usually get these vans back within a year and he nodded. It was hard to imagine this at the time. As the progression was fast we needed the van most for Drs appointments and shorter trips - the van we had was no beauty by any standards but it was good enough. In the 9 months we had it we put about 1000 miles on it. When all was over I was relieved to be able to give the van back at a price that was predetermined in the sales contract. No hassle at all.
 

jonico

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Hi Lindy,

You've received some great advice and information above...especially taking into consideration that your husband is tall. I'll add another option to the mix. We used an MV-1 for the entirety of my wife's four year ALS journey and mostly loved it. For us, I would say the only downside was that the suspension is quite stiff and I had to be very careful to avoid bumpy roads at all costs. I have to imagine most or, all of your roads are pretty smooth unlike a lot of ours in the northeast. So hopefully that point is moot for you.

If you want to see what one looks like google search 'MV-1 Mesa AZ', and Arizona Mobility Center's Facebook page with an MV-1 for sale should come up as the third option (search just MV-1 for better inside pictures). Our MV-1 had the same built-in automatic, heavy duty ramp with short and long options. My wife, when still able, could wheel herself right into the front passenger seat opening. I easily did it for her once she was unable, as there is loads of room to maneuver and I could stand and walk around, although somewhat hunched over. A potential downside for you is that it was manufactured as a mobility vehicle without a front passenger seat. If you have the wheelchair that isn't an issue of course, but if there will be any gap between accessing a wheelchair and using the vehicle that would be a concern. The chair lock system allows for the PWC to be locked into position anywhere from up against the back passenger seat to right up front, right next to the driver. Your husband would be able to "stretch out" if he likes, while still essentially sitting next to you. My wife loved being up front.

If you are at all interested in this vehicle, I recommend asking AZ Mobility Works about servicing the vehicle. This vehicle is no longer manufactured and servicing them might be a challenge. We didn't have a problem, and we live in much smaller metro area than you, but you'll want to take that into consideration if you contemplate going this route.

Hope this helps and hope you find the optimal solution! Jon
 

lgelb

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Having mentioned the van, and you've gotten lots of helpful hints on that, I'll just mention also that if you are near public transportation (we were), you don't necessarily need a van (we didn't). Again, you can rent when you need to and there is usually an option to have it dropped off and picked up.
 
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JimInVA

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We were advised to be proactive and early with a Power Wheel Chair (PWC). I'm so glad that we did. My wife, Darcey, wanted to continue working long after she was no longer able to walk. We owned our own business and she was determined to continue being a productive part of that. At the time, I had a regular van... a 2003 Honda Odyssey. I had to "Bear Hug Transfer" her from the PWC to the front passenger seat of the van. It was challenging, but I was able to do that.

I would then take the PWC around to the back of the van. I'd open the back, pull out ramps that I had and set them into position. I'd then lean the back of the PWC back and used the rear controls to drive the PWC into the back of the van. Fortunately, it fit. I'd then slide the not-so-light ramps back into the car. We'd then head home where I'd do the reverse. As time went on, this process began to kick my butt. It was time for something else.

So I went to a "mobility" dealer and looked at BraunAbility conversions. They could order new and convert a number of different van models. Having had a previous Plymouth Voyager and the Odyssey, I was certain that my choice was going to be either another Odyssey or Toyota's van offering.

So off I went to the local Toyota dealer and took the Toyota Sienna for a test drive. It was okay... but I really liked my old Honda. So off I went to the Honda dealer and test drove the latest Odyssey (2014 Model). I immediately knew... it was going to have to be the Honda Odyssey.

I then went back to the mobility dealer and had him price out a new 2014 Honda Odyssey with the BraunAbility side door ramp. The cost was going to be just over $75,000 when all was said and done. Okay... I guess it was just going to be something that I was going to have to swallow. I'd always saved and paid cash for our vehicles... but I would have to borrow a bit to make this one work.

It was now the weekend. I thought about the Odyssey and became concerned. What if... after ordering and getting the van... Darcey's PWC (with her in it) would not fit or go up the ramp. Some how, some way, I needed to find another Odyssey with the same BraunAbility ramp that would let me take Darcey in and out of it while in her PWC.

And so I jumped onto the internet and began to search. I wasn't finding anything. Nothing. Nada. But I kept coming back and trying different search parameters. Again to no avail. Sunday came and I just wouldn't let it be... and I began to search anew. And there it was - a 2013 Honda Odyssey with the correct conversion for sale at a van dealership that was 45 minutes away from us. It had just gone online minutes earlier. I emailed the dealership and asked if I could see it on Monday. To my surprise, they responded with a resounding "Yes!".

On Monday morning, we excitedly headed to the dealership. Arriving, I parked and began the tedious process of getting the PWC out of the back of our current van (using removable ramps), getting Darcey out of the car and into her chair and then pushing everything back into my van. I was so beyond liking my resourceful means of transferring her PWC!

I introduced myself and Darcey and was handed a set of keys and pointed to a beautiful new looking 2013 Honda Odyssey. It was the exact color that I was going to order for the new van from the mobility dealer. I pushed a button, the right side sliding door opened and exposed a folded ramp. In seconds that ramp reached out the side opening and fully extended. The moment of truth was upon us.

As I was only concerned with determining whether I could actually get her in with her large and tall PWC, I was not concerned about removing the front passenger seat. I decided to drive Darcey in backwards using the PWC controls. The excitement we had from the knowledge that this could work had us grinning from ear to ear. But when I sat in the driver's seat and turned on the car, I was treated to another surprise.

This used 2013 Honda Odyssey did not have all the camera and lane change warning stuff that the newer 2014 had. But it was spotless, looked like it had never been used and had a double battery system (a Veterans Administration requirement for vans they pay for). And after turning it on, I noticed it had a half tank of gas and had 400 miles on it. Heck... this thing was only on its 2nd tank of gas!

Of course it was going to be nearly as expensive as ordering a new one. But I had to ask. As they'd not yet washed the outside, they had not put up any pricing. So back into the dealership we went. I'm never comfortable in such places as you know each side has to fight for its position on pricing. After I asked, he pulled out the paperwork, looked it over, and punched some numbers into a handheld calculator. "Mr. Bird... it looks like I can let this go for $49,000 even."

Darcey and I looked at each other with shocked faces! We'd made the decision to order a new van if she could fit into this same model van (and she did!). Now, we had the opportunity to take ownership of a very nearly new van for over $25,000 less. You would not believe how quick we were to put a $1,000 deposit down... and how excited we were to go back at the end of the week to pay off the balance and take it home with us.

Having that van was the start of our beginning to live again. One month later, the doctors at Johns Hopkins would change Darcey's diagnosis from a recoverable CIDP (which had caused us to put life on hold waiting to get better) to a terminal diagnosis of ALS. We immediately took life off hold and began to do things again.

The van allowed us to travel comfortably for up to 5 or 6 hours. That time was the amount of battery that her Trilogy would work before needing to be recharged. And it was at about the time limit of her needing to use the toilet. But we could travel quite some distance in that amount of time. AND WE DID!!!

We removed the front passenger seat and I had an EZ LOCK system installed... the locking bracket to the floor of the car and the retainer bolt to the bottom of her wheelchair. I would back Darcey up the ramp and into the car... and would still have enough room to turn her and guide the PWC into the EZ LOCK device (which would clamp her chair into a "locked and not gonna move" position). We both appreciated the fact that we were seated side-by-side of each other. We could see the same things and talk with each other as we'd done pre-ALS. It definitely worked for us.

On trips, we'd make sure we had "handicap accessible" rooms. We called ahead to get that location's definition of "handicap accessible" as it really could vary (a lesson we learned early on). I had purchased a folding hoyer lift that I would bungy to the driver side sliding door. Because it would fold up, it became quite compact and was easy to take with us. I'd also pack up a commode as this could be used in any situation versus a hotel/motel room's toilet that was really accessible.

That combination meant that nothing much could hold us back from traveling. We met and shook hands with Joe Bonamassa (on multiple occasions), met and spent time with Sandi Thom and got hugs and kisses from Beth Hart. None of this could have happened without the van.

I now need to apologize. I'm not sure how this got so long as I was planning only a quick reply. Today is 8 weeks since Darcey's passing. As I began to relive those earlier moments, my fingers took on a life of their own as they caressed the telling of the story.

Steve gives great advice. Our van has no middle seats and has a lowered floor. Both driver and passenger seats are raised to compensate for the lowered floor. They are also both removable. I have to be careful of curbs (like the kind in fast food drive thru's... which you don't see as you try to get past the guy parked ahead waiting for his order to be delivered)... or one could cause some damage. Personally, I love this van... as I loved the one I had before it. I will certainly miss it when I decide to put it up for sale.

I hope that you are able to find what you need among the many options available. The freedom to get out and keep the closing walls at bay is a godsend. Whether it is a drive around the block... a trip through the neighborhood or to the doctor's office... or a 300 mile trip to just get away... you'll likely be as glad as we were for the freedom that such a vehicle can offer.

My very best...

Jim
 

loridair

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Thank you, Jim, for sharing your story and wisdom.
 

blitzc

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Lots of great advice from Steve, Jim and the others. I will add a few short points of personal experience.
  • Use a mobility dealership. They are experts and will bring the van(s) to you in order to practice with your wheelchair.
  • We love our 2016 Honda Odysey!!! Have used it on one long trip and several short trips plus the ability to just get to a park.
  • When purchasing from a dealer the sale is divided between van cost and accessability costs allowing the mobility package costs ($20-30,000) to be a tax write off as a medical expense.
  • Check in advance with your insurance company. Ours would only insure the cost of the van and not the mobility package. We had to find another company that would insure the full value.
 

swalker

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Jim, you post is amazing. Thank you so much for sharing that!

Blitzc, thanks for pointing out the insurance issue. Our insurance company was able to provide coverage for the van. We made sure to get rental car coverage for our van so that if it was out of action for a covered incident we could rent a van (they rent for over $100 per day). When our van was stolen, the insurance company balked at that, saying they would only provide a large SUV. We reminded them that they had specifically agreed (verbally) that the coverage would provide for a wheelchair van. They looked up the recording of that conversation, found that they had made that agreement, and honored it.

lgelb mentioned the option of public transportation. This is something worth looking into. Where I live, there is free bus service that runs every 15 minutes in the winter and every 30 minutes the rest of the year. All the buses accommodate my wheelchairs very well. In addition, our transit system has a handicap van that they can send to my house to pick me up and take me wherever I need to go (and then bring me back home afterward). They require 24 hour advance notice, but have done it on less than an hour's notice if someone is available. Most of the bus drivers and the manager of the transit system have become friends. They have been amazingly helpful! Before Covid, I rode our buses regularly.

Steve
 

lindyazmn

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Wow, you guys. Thank you so much to all of you for the thoughtful advice and touching stories. This is SO helpful! With all this guidance, I feel like we can now forge ahead. And just hearing stories makes helps me understand that we will get through this, that I can take the best care possible of my husband, and that I may actually survive...
Lindy
 

KenM

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thanks to all for this hugely helpful advice. I'm 6'4" so the guidance on vans and tall pALS is really important.
 
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