Time For the Big Chair
Ugh!! So, the time has finally come where I can no longer avoid getting the massive 400lb customized wheelchair, or as they call it – ‘The Big Chair’.
I recently got fitted for my wheelchair and also got a conversion van to help me get around with my ‘big chair’.
Overall, the fitting of the wheelchair did not go well and I am still working on correcting issues with my chair.
Obtaining the van actually went well.
The key difference was research. I did quite a bit of research before purchasing the van, for the wheelchair I relied on the physical therapist and the sales rep, which was a big mistake.
Here I would like to provide you with some tips based on my experiences.
Customized Wheelchair –‘The Big Chair’:
1. When is the right time to get ‘The Big Chair’?
While your doctor or physical therapist maybe making recommendations on when
you need to get your customized wheelchair; it is ultimately a personal decision.
You should do what is right for you and your family.
For me, the deciding factors were:
- Frequent falls
- Losing my balance despite AFOs and a rollator
- Feeling unsafe using my portable power wheelchair outdoors
Again, for every patient this is a very individualized decision.
2. Do some research before you go for your wheelchair fitting.
There are 2 major brands of wheelchairs that are most commonly used in ALS patients. Those are Peramobil and Quantum.
Before your appointment:
· Learn the differences between the brands.
· Watch comparison videos.
· Read reviews.
· Join ALS Facebook groups and ask other patients what they like—and what they wish they had chosen differently.
Remember that distributors may naturally favor the products they sell, so gather information from multiple sources.
Here are some helpful resources.
3. What is the Goal?
The goal of the wheelchair is to ensure comfort and maintain some level of independence as the disease progresses. Really think about this as you decide what chair is best for you. What your needs are today, may not be what you need in 2 weeks, 6 months or a year from now.
4. Take a test drive.
This is something I did not do, and I wish I had.
Before you go in for your wheelchair fitting, try and see if you can go into a showroom and test drive a few different make and models of both the Peramobil and the Quantum.
Try:
· Different models
· Different seating systems
· Tight turns
· Uneven flooring
· Inclines
5. Cost!
Unfortunately, the cost of the wheelchair maybe the single most important driver in your decision in terms of which wheelchair you get. The cost of these wheelchairs can range from $25,000 to $50,000 or more.
When I was fitted for my wheelchair they told me they would not know how much my out of pocket costs for the wheelchair would be until they ran it through the insurance. Know that despite insurance coverage there will be out of pocket costs for the wheelchair that can range from a couple of hundred dollars to thousands.
When you go in for your wheelchair fitting, this is one of the first things they should ask you – ‘how much are you willing to pay out of pocket for this wheelchair?’.
If you do not have insurance, then your options become very limited. Sorry, but this is just the cold hard truth! Some things you can consider:
- Contact your local ALS chapter. They may have loaner wheelchairs you can use. They also may have used wheelchairs that you can purchase at a lesser cost.
- Contact some wheelchair distributors such as National Seating and Mobility and Numotion. Tey may have used wheelchairs that you can purchase.
- Try to contact National ALS associations to see if they have any advice or options.
6 Start early!
This is a progressive unpredictable disease. As much as you do not want to think about getting a wheelchair, that you do not need one for awhile, just be as knowledgeable about this topic as you can, so that when the time comes it is not an overwhelming experience for you.
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The Van
1. Measure your chair.
Know the dimensions of your char – the height with you sitting in it fully upright, the width both front and back, and length.
This is very important as vans can have difference clearance for entry, and space for the chair inside the van etc.
2. Really think about your budget
Unfortunately, wheelchair-accessible vans are expensive.
Many cost $80,000 to well over $100,000, and insurance generally does not cover them.
Before shopping:
· Decide what you can realistically afford.
· Compare multiple dealerships.
· Look at financing and leasing options.
· Consider whether new or used makes the most sense.
Prices—and financing—can vary significantly.
3. Research!
Research the different vans and conversions that are available.
Compare:
· Side-entry vs. rear-entry
· Interior space
· Ramp design
· Tie-down systems
· Driver and passenger options
Below are some resources to get you started.
4. Take a test drive.
I highly recommend doing this before making your purchase.
Some of the larger dealerships such as MobiltyWorks will pick you up and take you to the dealership. They can do a needs assessment and also let you try out different makes/models of minivans with different conversions so you can see firsthand what if feels like to be in the van with your wheelchair.
Final Thoughts
Getting "The Big Chair" wasn't something I looked forward to, because it means my ALS is progressing. It basically sucks! But it needed to be done, and hopefully it will provide some level of comfort, safety and independence.
If sharing my experience helps even one family avoid some of the mistakes I made, then this chapter of my journey has served a purpose.
If you're beginning this process, know this:
- Do your research.
- Ask every question you can think of.
- Test drive everything.
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