Old 02-14-2017, 09:31 PM #1 (permalink)
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Default Where we are and Questions

Hello all,

This is my first post, but I have been lurking for a while, soaking up all the information I can process. Let me tell you, I have learned more on this forum than all other venues available, and I thank you all.

My husband started with foot drop in 2011, then fasciculations and muscle loss. He has been seeing a neurologist since early 2013. One by one, other diseases were ruled out, and by August of 2014 after multiple EMGs, blood tests and a muscle biopsy, we were told that he had Lower Motor Neuron disease. We went to Hopkins for a second opinion, same result. When our first ALS clinic had budget cuts and lost some services which we considered important, we switched to another ALS clinic, where we are now. The doctors there said that although he was not showing any UMN symptoms, that it was in all probability ALS with limb onset.

At first, his progression was relatively slow, but 2016 was pretty brutal. He went from being able to walk and still working, to having very limited use of his arms and legs and having to go on disability. It's taken his toll emotionally too. He previously was very active and the main breadwinner. He is often, understandably, angry and frustrated. I went on LOA from my job late summer, and in December left to become his full time caregiver.

He needs help with most ADL. He can still stand and transfer, or use a transfer board, but can only walk short distances with a walker. He is now in a (loaner) power wheelchair. We were able to have our house remodeled to have a downstairs bedroom and handicapped equipped bathroom. We also had a ramp put in the garage.

Now, I need to get him out of the house more, for both of our sanity. We have been looking into purchasing a minivan, but the prices!!! Even used ones are outrageous. He is not a vetertan, so we're on our own for the cost. I've recently been put in touch with a past CAL, who unfortunately lost her husband in January and is looking to sell their van. It's a 2009 Toyota Sienna with a Braun conversion and clean title. She's asking less than half of what the manager at Mobility works has been able to come up with for even a used vehicle. It has 100,000+ miles on it, but I know most Toyotas last well beyond that - we recently gave our daughter my 2010 Toyota Camry with 120,000 plus miles on it and it still runs like new.

That said, what questions should I be asking for a van with this type of mileage? What about the conversion equipment? It has a motorized swivel-out front passenger seat. Does anyone have any experience with them? I know he may not be able to transfer to that seat at some point, but this would give him some flexibility in seating, at least, for now, if we go on a longer trip. The ones we have looked at all had the removable front seat, which probably won't be an option with this one in the future.

I have read that we should not purchase a van until he has his "insurance paid" chair. We just got a call from the seating clinic today that his is in and he has an appointment to get it fitted and customized next week. The seller has generously offered to come out to our house on Sunday so we can see the van. I'm hoping if it is an option for us, that she will wait a few days to finalize things to make sure that his new chair will fit. I want to be sensitive to her ALS battle and her very recent loss, but also need to ensure that our needs are met. Any suggestions would be greatly appreciated.

And I apologize for the length of this post.

Thanks in advance!

C
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Old 02-14-2017, 09:43 PM #2 (permalink)
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Default Re: Where we are and Questions

We bought our 2009 Toyota Sienna from a past CAL in Houston. It had 90k miles when we bought it and had the Braun conversion on it. Steve has no problem getting in and out with his power chair and we can also remove the front seat and tie his chair down in the front.

I am not sure why you aren't able to buy the van as it is a the only transportation that your PAL can use to get back and forth to the doctor. I am sure she will work with you. Maybe a deposit so the sales is not final until after you get the chair.

We do like our van and we able to afford to pay cash as it was used. We could not see buying a new one and paying monthly payments or spending a ton of money for bells and whistles that we wont use to often.

Good Luck!
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Jrzygrl (02-14-2017)
Old 02-14-2017, 10:05 PM #3 (permalink)
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Default Re: Where we are and Questions

Hi Jrzygal and welcome.

We also have a 2009 Toyota Sienna with the Braun conversion. Ours was new, as DH would not buy used, and around here Toyotas are hard to come by so equiped. Actually we went with Toyota being long time Toyota buyers, but also because it had the highest door opening. DH is 6'2 and this allowed him entry in his Permobile with hardly a bend of the head, or tilt to the chair. At the time, he used the swival front seat and transferred to it to drive with hand controls. His chair locked into the middle section with a floor lock. When he was no longer able to drive, he remained in PWC locked in behind the drivers seat. I think you would be very happy with the toyota van.

My only suggestion and this goes to all CALS/PALS reading this thread is, if you will not be driving the vehicle a few times a week, keep the battery connected to a trickle charger. Now that DH cannot travel or even get in his PWC, the van is used very, very little. He won't let me sell it on the chance I might have to get him out of here. (how pray tell I will get him in the van from the bed by myself at this point is unknown, but it makes him comforted that the van is still here) The battery will drain right quick, if it's not used consistantly. All the conversion equipment does that for whatever reason. I have heard from other local CALS, that they also use a trickle charger on their vans as well.

Good luck to you as you proceed with this purchase.

Hugs,

Sue
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Old 02-14-2017, 11:19 PM #4 (permalink)
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Default Re: Where we are and Questions

Thank you both for your replies. My husband is also 6'2" and will be getting a Permobil F3. I am hoping this works out.
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