Vehicle advice

[Gorby]

I am looking for input on when to buy a wheelchair van. I need to replace my current car as it is 17 years old and getting to be unreliable. The difficulty is that we are confused about which direction to take.

It's been 5 years since my first symptoms (started with bulbar). In the last year I have gone from cane to rollator. My arms and torso have also weakened. I am short, so I can't get into a standard minivan, like a Sienna or a Caravan without a stepstool. So we have been looking at a "microvan", like the Mazda 5, with the intention that I can get into the passenger seat and the rollator or a transfer wheelchair will fit in the trunk.

I know that progressions vary, but could anyone offer any advice about what they have done? Anything you would do differently?

Thanks

 

[ehd42]

You describe progressive ALS symptoms; therefore, you are likely to need a power wheelchair in the future. If you are buying a minivan now, consider one he that is wheelchair accessible. Your short stature will not be an issue since such vans have a ramp. If you're going to buy a van, then begin research what type of wheelchair accessible van might be best for you now and in the future (e.g., rear entry, side entry). This is all part of advanced planning because everything requires time when it comes to ordering a power wheelchair and managing increasing disability.

 

[Nuts]

Absolutely look at mobility vans with ramps that will include a ramp!

 

[billbell52]

I also have Bulbar PLS. Your progression is similar to mine. Bulbar PLS seems to have a more well defined progression. I went from a cane to walker to scooter to PWC in a matter of 24 months. It started at year 5 and by year 7 I was in a PWC. I no longer work/drive. I rent a mobility van from time to time and use paratransit services, door to door service and $6/round trip. I plan to get a vehicle next year. I am seriously considering an MV-1. Adding a ramp to a regular vehicle costs between $20K-$30K and destroys the vehicle integrity.

 

[Gorby]

Thanks for the input everyone. From Bill's experience it sounds like I may only be another year from a PWC. Maybe the best course of action is to just keep my old car and start learning about wheelchair vans/PWC's.

 

[billbell52]

I am not saying it is going to progress like that but I have run across about 8 Bulbar PLS people and the progression has been amazingly similar to mine. Being confined to a PWC has lots of implications with a major one being living arrangements - steps/stairs, shower/toilet, furniture, doorways...etc. Check out local transportation options like paratransit services, buses, trains etc. Dallas TX offers a lot of options. I would think Vancouver would to.

One other item. Bulbar ALS is a very aggressive form of ALS. I was diagnosed with PLS after 2 years since I was not dead or near death.

 

[Trixie80]

Gorby
Look on craigslist and kijiji thats where i found mine. It took a few months to find it

 

[gooseberry]

You can also talk to mobility equipment dealers. They have amlot of info, can explain many things to you, often have inventory in chairs,vans,etc.

I wouldnt recommend a mazda 5 because as more things are needed, space will become very tight. A van or wheelchair transport type vehicle will make life a lot easier.

 

[billbell52]

You could talk to the local MV-1 dealer.

MV-1 of Vancouver
Auto One Sales and Leasing, Vancouver, BC V6P 3J9
888-699-1017

Dealer home page | MV-1 of Vancouver

 

[Gorby]

The MV-1 seems like a good idea - I can see where adding a 400 lb wheelchair plus ramps, etc. to a standard vehicle could cause issues. Although, I am thinking to start, that we will be looking at something used. Anyone been in an MV-1?

Bill - you mentioned bulbar ALS progressing fast. Is your theory that bulbar PLS also progresses faster than limb-onset?

 

[vw-fl]

Hi Gorby. In the forum "People with ALS..." the MV-1 was recently being discussed on the thread started by Statius on 9-10-16 titled PWC Transport.

 

[billbell52]

In general, I would say Bulbar PLS progression is more well defined and faster. You are usually in a PWC at 6-7 years with no or very limited speech. A lot of ascending PLS'ers can use a walker after 20 years and still may have reasonable speech capability. Bulbar PLS is a rare form of PLS, maybe 20% or less of PLS'ers have Bulbar PLS.

Ascending ALS also progresses widely. Some people last many years. Usually people with Bulbar ALS are dead or near death in 2 years.

 

[Eydie67]

I am looking for input on when to buy a wheelchair van. I need to replace my current car as it is 17 years old and getting to be unreliable. The difficulty is that we are confused about which direction to take.

It's been 5 years since my first symptoms (started with bulbar). In the last year I have gone from cane to rollator. My arms and torso have also weakened. I am short, so I can't get into a standard minivan, like a Sienna or a Caravan without a stepstool. So we have been looking at a "microvan", like the Mazda 5, with the intention that I can get into the passenger seat and the rollator or a transfer wheelchair will fit in the trunk.

I know that progressions vary, but could anyone offer any advice about what they have done? Anything you would do differently?

Thanks

I also use a rollator for limited walking, and when I go out I use a GoGo Scooter. We recently purchased a Mazda CX5 and had a lift put in the hatchback it fits perfectly. I can just slide in this SUV without a stepstool. I'm 5'4" if that helps, I tried a bunch of SUV's before I found one that suited my needs. The GoGo Scooter, does break apart into 5 pieces but my husband hates putting it together. This solution fixed that problem. The state of TX will refund the Sales tax you paid on a new car, if you have a medically necessary lift installed. If you get a letter from your physican and fill out the proper paperwork they will refund all the sales taxes. My new lift is a Bruno.
I hope this helps a little.
Eydie

 

[billbell52]

I currently use a Permobil PWC but also have a GoGo Travel Scooter (MDA loaner). I also got a new car in 2009 and had a lift installed on the back. I got the sales tax refunded and Ford gives you $1000 toward handicap equipment so the lift was essentially free. At the time I could still safely drive but that lasted about 5 months. I still use the GoGo scooter for short outings but I find it very uncomfortable for more than 2 hours. It is a pain to make the transfers. If I can plan ahead I sometimes use DART Paratransit. They do door to door service and I use my PWC ($6 round trip fee).

I considered getting a used handicap van in 2009 but it was more expensive and I was optimistic about my progression. I plan to get a mobility vehicle next year.