Adios Pablo!

Some big news here this week. We've sold Pablo (my wheelchair van.) At first I tried to sell it privately, but what worked out best for us was just to sell it back to the company we bought it from in the first place.

It's still in our possession, but won't be soon. WOW! That's a very big deal. 

We've had Pablo for four years. We bought it just before the pandemic hit in January 2020. He was incredibly expensive. It's insane how much mobility tools are when you have to pay for them yourself. There are many programs to help families of disabled children, but not many for adults.

I'm relieved and ready to say "adios" to my good friend. Having it there in my driveway is a constant reminder of all the things I couldn't do and my reliance on others. Even though I occasionally drive it now. It's also expensive to maintain. It's not being used for its intended purpose. I'd rather pass it on to someone who can REALLY use it.

We have another car. A Kia Soul that has been a fantastic friend. Then my mother has a large Jeep Grand Cherokee. For now we're not looking to buy a second car. I am however on the hunt for a new bicycle! 

Unlocking the World

On August 17th, 2018 I had my first ever assessment for a wheelchair. That chair would turn out to be my Quantum Edge in Ocean Blue (of course). I love her very much.

How can you love a wheelchair?

Much the same way people love their cars.

For me she's so much more than a chair that moves. She's everything about freedom that's so important. She literally unlocks the world for me. Without her my life would be smaller than small. 

She also means independence.

I'd be relying on others to push me everywhere if I didn't have her. Not only is that tedious for them, but it feels awful for me (literally, I get motion sick this way.) As my mother once put it when she had to push me before we purchased our wheelchair van. "Awwww, it feels the same as when you were little and I would push you in your stroller." For me too mom! It feels the same for me too. Like I'm an infant. Ick!

My biggest fear is that she will break and I'll have to wait months and months (if not a full year) to get a new one. Repairs and delivery of medical devices is shocking. A few companies have a monopoly so they can take their sweet time, lose your order or screw it up as much as they like. You're at their mercy. It's such a racket.

I have many fantasy businesses, but one of them is running my own wheelchair supply and repair business. 

Anyway... I digress. 

If something happens to my chair (and it already has in the past) I'm very limited. I do have my travel chair as a backup, but she's not nearly as comfortable or maneuverable. She's good for an emergency, or rugged travel. Not really for every day use.

I'm also curious if I could get a new wheelchair that raises and lowers up and down. Not just tilts front and back. And, as much as I love this chair, I didn't get the full assessment of an occupational therapist (OT) when I was fitted for her. Just a sales man for the company who ordered her for me.

I contacted my insurance company to see when I could qualify for a new chair and was told "Anytime you need one." WOW! That's great news. So then I reached out to my muscular neurologist and asked how it would work. She said she would need to see me, but that we could do a video visit. Then she would send me to my fabulous muscular disease OT for an assessment. Bingo!

This all means I'm hoping to get an order in for a new chair soon. That will give me some new options and a solid backup should anything happen. And IF I ever travel again on a plane, I can bring my big chair and not be in a panic if something should happen to it during the flight.

My world just keeps getting bigger.

Meet Pablo

Four days ago we pulled the trigger and bought a wheelchair van. Not just any wheelchair van though. This thing is a fricken rocket ship! I'd like you to meet... Pablo!

Pablo is a 2017 Chrysler Pacifica Touring Limited Plus with only 4,500 miles. He comes with a Braun electric fold out ramp, light sand colored leather seats that are heated, heated steering wheel, automatic lowering capabilities, back up camera, satellite navigation system, blu ray players front and back and (my husband's favorite feature) climate control for each section of the car front and back. That means I can have my side at 60 and he can have his side at 80. Win-win. Also our 6'4 son finally has plenty of leg room in the back seat. "And I even like the color" (Indiana Jones joke).

We'd been looking and thinking about a van for almost six months. There was a lot to learn and next to our house it was the biggest purchase we'd ever made. 

There are plenty of disabled people who live out their lives without a wheelchair van, so why did I feel like I NEEDED one? I am a tall, large lady. I have a tall, large wheelchair that is built to accommodate me. Yes, I also have a travel wheelchair, but it gets uncomfortable quickly. And given I'm already in constant pain it is important to be to be as comfortable as I can (enter the seat heaters). My big wheelchair makes me much more comfortable and I can't use it without a van or a bus. The bus doesn't go everywhere I need/want to go when I want to go there. My town is small and I can go out in just my chair a lot of the time, but not everywhere and only when the weather is good.

Also, my husband and I enjoy going on adventures. I'm hoping in the future more of those adventures can include road trips. There may come a time where I am only able to transfer in and out of my chair minimally and not walk much at all. I like being prepared and not having things like that sneak up on me. In Pablo we can keep the adventures coming for years and years no mater my mobility status. Even if I'm completely immobile actually, which is really fantastic!

And yes, a lot of disabled people don't have a van, but they also don't have anyone to drive it for them. In fact a lot of them end up becoming "house bound" which is a horrible, but understandable situation. Options outside of your own van really stink and aren't free (much to able bodied people's shock). And even being driven around can be exhausting. So a lot of the time people just end up staying home. 

No matter how severe my mobility issues get I refuse to have that happen to me. I will nap when I need to, sure! But I will get out and be a part of the world and let the world be a part of me. 

Wheelchair Van Shopping

Terrifying, daunting, uncomfortable, overwhelming... maybe those words begin to describe what it's like to shop for a wheelchair van. These are just a few reasons I suspect most wheelchair users choose to either not go out much, or to take public transportation. The other reason? COST! DAMN! I mean come on! The prices of these vans will take your breath away.

My husband and I began thinking about pulling the trigger on a wheelchair van this summer. We're fortunate enough to have actual options in the city we live in. Most people I think are stuck with a single dealer or buying private. I thought I educated myself and was prepared ahead of time from internet research. Nope. So let me break down my experience for you so far in the hopes that it might help you out in your search.

That's some serious "RBF" going on there!

Step 1: Find what kind of ramp you want.
Electric? Manual? In-Floor or out? There are many options here. I want an electric "Fold Out" which is not the same as "In Floor". The reason is because if the electric equipment has a malfunction (and we know how common that is) then you can still manually get your ramp up and down. You're not trapped in your chair till some magical help comes along.

Step 2: Will you ever be driving?
I've heard a lot of stories from people who thought they would drive, but then due to their progressive condition only drove for a year or two. It ended up not being worth the huge expense of making the drivers side accomidate their needs. Case in point. When we first started looking I was still driving. I was interested in a "Transfer Drivers Seat" meaning I could easily transfer from my chair to the drivers seat to drive. Well, I'm no longer driving and I don't need that expensive feature.

One of the many benefits of buying a van from a dealer vs private party is that as your needs change you can have your van modified. For example I don't need a transfer passenger seat yet, or a chair lock down in the front instead of a passenger seat. If that changes in the future I can have our van adjusted.

Step 3: What kind of van do you want?
This is called the "Chassi" in the wheelchair van world. Common makers are the usual. Honda, Toyota, Chrysler, Dodge. Each comes with their own pluses and minuses. I am very tall with long legs and an "ample bottom" so having a comfortable, roomy passenger seat is really important to me. Also due to my chronic pain, seat heaters are really a big plus. Because of these and a few other important features I'm hoping to buy a Chrysler Pacifica Touring-L Plus.

Step 4: What's your budget?
Wheelchair vans range wildly in price just like regular cars. Also like a regular car you get what you pay for (in my opinion.) The older the car, the more miles on it, the less expensive it will be. You will need to consider--The Chassi Price, Conversion Price, Equipment Cost (tie downs, modifications to your chair to be locked in, transfer seats, driving mechanisms...) and Warranty. Then of course there's taxes, documentation fee, license fee, smog, registration and every other nickel dime fee there is. 

Some Chassi brands will give you a small rebate. Usually around $1K and only if you're buying brand new. A super small drop in the bucket. In my state there are no programs to help you with the cost. It's considered a "non medical necessity". Though my dealer mentioned we might be able to deduct the cost of the conversion and equipment as a DME (durable medical equipment). We'll check with our accountant about that.

And some cars have lease options instead of buying. But I have found them to be too rich for my blood. However if money is no object and you just want to have the best you can buy it should be an option to consider.

I was happy to hear that there are programs where veterans can get a van almost completely covered (they should be able to get whatever they want for free if you ask me). And my dealer said "Victims of violent crime get a 30K payout to put toward the cost of a van". 

The van we're considering is a 2017 (two years old) with super low miles. "Out the door" it will cost $61,094.87 to purchase. Luckily we have excellent credit, but I was told that financing a van can be difficult as it isn't treated like a typical car purchase. You can also get financing for up to 10 years to make the monthly payments a little bit easier. For us those payments are still 4x our current monthly car payment so that's a huge, scary undertaking.

The next steps are to talk to our banker about it, sell my husbands car and pray that my student loan debt is forgiven due to permanent disability. I'm checking the status on that daily. Hopefully we can pull the trigger soon because it would really improve my quality of life to have "Dory" with me whenever I need her.