Jrzygrl
Senior member
- Joined
- Feb 14, 2017
- Messages
- 751
- Reason
- Lost a loved one
- Diagnosis
- 08/2014
- Country
- US
- State
- NJ
- City
- X
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
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
