“My Van Broke Down 😱 Now What “ Chapter 105

The year was December 1998 and Laura and I were driving from Killeen, TX to San Jose, CA with our four kids, a cat, and six suitcases. We were moving to Hawaii, but dropping off our Dodge minivan and spending a week in California on vacation first. It was getting late and everyone was sleeping as I was driving about 75 mph on the highway. Suddenly, the van dropped from 75 to 40 mph for an unknown reason, and refused to go faster. We found a hotel for the night, and the next day we sold the van and brought another one, continuing on to California safely.

Other than a little stress and minor delays along the way, we were able to handle everything that came at our family before LIVING with ALS by remaining flexible and as prepared as possible. But what do you do when your wheelchair van breaks down?

Two years ago we bought a Toyota Sienna Hybrid mini van (“Getting Ready" Chapter 7). When we bought it, we thought we would not have to worry about that part of our lives. After all, we did buy it brand new. Boy were we ever wrong. We thought it was perfect with a side entrance and automatic ramp. It was a hybrid engine - to be both earth responsible and to benefit from great gas mileage - with removable front seats and an EZ Lock system so I could sit up front and be locked in. There were/are many extras and benefits that came along with the vehicle.

Turns out, buying a mobility vehicle for the first time is similar to buying your first home. You find out quickly how much you don’t know. For instance, when we bought our first home and went through the building process, we were still using a landline phone (the kind you plug into the phone jack on the wall... just to clarify for you youngsters reading this). We didn’t even think about putting a wall jack in the kitchen until the day after we moved in. I was standing there with the phone ☎️ in my hand, looking at Laura, and wondering 💭 what to do. For the next five years we had to run to the bedroom whenever it rang.

In the spirit of continuing to serve, I figured I would discuss some of the things we discovered over the past two years with our van, hopefully saving you some troubles before you invest in your own mobility vehicle.

Before we bought the van I “thought” I did some pretty good research. Pros and cons for the rear or side entrance (insert your own jokes here), hybrid or gas, electric or manual ramp, even where I wanted to sit. After all, I waited years to sit up front without having to call “Dibs."

• Entrance Location: The option to have the side entrance or rear entrance is a 50/50 toss up. Rear access will require you to park where you have room for the ramp and the room to safely move your chair while not being hit by traffic. For every vehicle I looked at with rear entrance, you would also have to park the chair in the second or third row. No more dibs on the front seat for me. Rear entrance also removed a lot of vital storage space.  The side entrance option is great when you are parallel parking and have the space to work with, but sometimes even the extra wide handicap parking spaces don't give you what you need to maneuver. The side entrance we went with does allow me to remove the passenger seat and lock into my rightfully earned space in the front row, though. Unfortunately, we've identified a few challenges along the way:

  • You lose seats for other passengers. When we're driving, it is very difficult to help me without having to pull the van over. Eventually we decided to put the passenger seat back, in the van, and I moved to the second row. This shift gave us the opportunity for another passenger to help me with any issues on the go and as they presented themselves. Although sitting in the second row solves the first two issues, it doesn't give as much room to maneuver things inside, so I have to ride facing sideways and watching everything out the window racing by 🥴🤢🤮.

  • Power ramps are great. You can use several buttons within the van, the key fob, or simply open the side door and it pops right out hands free and ready to use. Unfortunately, though, the power ramp's safety features suck. If you park within three feet of anything or anyone, and the ramp won’t extend. There are very few trips where Laura doesn’t have to open and close the door multiple times just to get the ramp to deploy. We even bet each other how many times it will take. If want to get in on the bet, just send me $5.00 in cash or Bitcoin. There are no guarantees you will win 😉😉. Power ramps are good in theory, but you can’t use it over sidewalks if you have a side entrance van unless you disable the power to pull it out manually, which is actually meant for emergencies. On the other hand, manual ramps may alleviate the issues with automatic ramps, but they are heavy and cumbersome, requiring you to get out of your vehicle and bend over to engage it. Case in point, when we parallel parked in a designated spot for an ADA event in DC, the ramp would not deploy over the sidewalk. That resulted in us having to walk in the street - in the middle of traffic - to the corner walkway ramp.

  • EZ Lock - or as I like to say, “Not so EZ Lock” or tie down straps to lock your wheelchair in place so it doesn’t slide around while driving. Th EZ Lock is an electric switch-operated system which allows the chair to lock in and out easily. It does work well, buuttt.. The lock is an add-on feature that you pay extra money for and you need to bring the van and your wheelchair to the dealership to get it installed. The bolt needed to lock the chair in is attached to the bottom, but this lowers the clearance and hits anything taller than 1 1/2 inches. The EZ Lock is also the direct cause of my van battery dying, and it cannot be moved once it is installed, and this leaves no flexibility to move the wheelchair to another location in the van. Ours now sits disconnected under the front row passenger seat where I'd originally had it installed. We now use four tie-down straps connected to a track system on the floor of the second row. Tie down straps work great, but (I'm sure you saw this coming) like a manual ramp, they are put on one at a time and you have to bend over to hook/unhook them up. They did come with at no charge, though, so that's a perk.

  • Hybrids are great and the gas mileage is certainly a plus, but you cannot simply pull out the cables and jumpstart it. There is a certain way to jump the van, and not all tow truck drivers know how to do this. We know this now because the van battery kept dying, and it took us awhile to figure out that the EZ Lock was the issue. Once, Laura had to show a tow truck driver where to place the jumper cables after he insisted he knew how to do it. She knew better, but refrained from saying, “Put them up your ass and see if it works.” Add Emergency Vehicle Service Coach to her resume. Here’s a link to see the differences on jumping hybrids (https://www.smarttoyota.com/blogs/2398/how-to-jumpstart-your-car-this-winter/)

Two weeks ago was when we started to realize that we were not as prepared as we thought. The year was 2024 and we were just finishing at an event in DC, and Laura pulled the van around to pick me up. She went to put the van in park but it wouldn’t engage. Instead she turned the van off to make sure it wasn’t going to roll away. The kids and I were waiting as she explained what happened, and once again like so many years before, we were stuck. Only this time I was in a 400 pound wheelchair and we couldn’t just call a taxi. Twenty minutes later my daughter found a video to correct the problem and we were on our way. Laura and I then spent time trying to figure out how would we get me home if something like that happened again, so I did some research and we came up with the following (less than ideal) options:

• As a Veteran I can use the VA Transportation service that will take me to and from appointments, but you have to book the pickup in advance. They do not have emergency options if you break down.

• Civilian medical transportation service is the same, however, they will actually pick you up for nonmedical emergencies... but only if they have a vehicle available. This could take several hours, though, and depending on the situation, may not be a good enough option.

• Uber or taxis may work depending on where you live, but just like the civilian medical transportation services, it all depends on availability at the time you need it.

I have not found a solution for this when it comes to a transportation service company for non-medical in theory you could call an ambulance, but that’s a worst case scenario in my opinion, and shouldn't be used for a non-emergency situation.

I do have an idea that might be worth exploring, though. The ALS community is small, but mighty. I haven't met a single person who wasn’t ready to lean in and help wherever they could. My solution is to make a list of other PALS and CALS nearby who might be willing to pick you up when you’re stranded. I have a few friends who have ALS with vans living in the area, and my plan is to make a mutual agreement with them. We may never have to call them, but having the option will give everyone a piece of mind. Whether they may need a ride from me or I have to call them, we're ready if/when the scenario requires a backup option.

I know what you are thinking, what if we are out of town? What would we do if we aren't in the area where I have people to call? I might have a possible solution for that, too. After calling the services first, I could turn to Facebook and a newly created “Slack” channel developed specifically for the ALS community by Brooke Eby. These tools would provide a place for PALS to collaborate, lean on each other, and even find support in unfamiliar areas. I invite you to join me on there -- it’s a faster, simpler way to work. Sign up here, from any device by clicking https://join.slack.com/t/alstogetherworkspace/shared_invite/zt-2tru2v4ro-ads1YRSBY9xFvzvsfsAIog).

I am very grateful to be part of the ALS community. Do I want to be LIVING with ALS or be the ALS CEO if there was one? Hell no - nobody wants this. I do, however, want to make a difference in the lives of the ALS communities none of us chose to be a part of. I want PALS to LIVE comfortable, meaningful lives, and to feel safe as they're doing it. I continue to hope that any advice or tips I provide within this post or any of the 104 others helps you to feel comfortable and confident as you continue to navigate this life.

If you have found another solution to the challenges I've identified here, please share them below or in the new Slack channels so we can all LIVE together.

Love and Blessings.

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