Update: Help Paula Keep Teaching Despite MS

A MASSIVE THANK YOU to ALL who have donated. I am beyond grateful!!. Update 2/18/25--Fun fact, The Odyssey is not the best option for wheelchair vans. I took a trip to Rollx Vans and took Ben with me so he could test-drive (& I could test-ride) a Chrysler. I couldn't drive it because it did not have a transfer seat and the step to get in is WAY too high for me to get in. So now I begin the process of seeing if we can add a transfer seat to the passenger side so I can sit on the passenger side. You can't sit up there in a scooter, yes a powerchair. Bonus, (I guess) when the time comes that I HAVE to move to using a powerchair, they will be able to make the modifications to the van I will already own. Again, thank you for sharing this and for donating, the caring and love are felt every day.

Paula

TLDR: MS sucks, I need a wheelchair van to safely move and keep teaching. Wheelchair vans are expensive! Thank you.

I am a daughter, wife, mom, and teacher. I was diagnosed with Multiple Sclerosis as a 30th birthday gift. My kids were one and four at the time. I have taught since 1996 and currently teach 8th-grade Global Studies. Multiple Sclerosis (MS) is a chronic autoimmune disease that damages the central nervous system and wreaks havoc with your body. It has been 21-plus years of living with this disease. Originally, it was relapsing-remitting; you couldn’t tell I had it just by looking at me. At the 10-year mark, my mobility started to get worse. Stairs became a challenge, so we had to sell our two-story house and move into a single level, aka rambler, with a basement. We had to ensure the main floor was MS-friendly. I used a cane for a while, but then I had to begin using a rollator when out of the house. (Rollator: walker with wheels and a cup holder if you are lucky.) The rollator was a game-changer for a couple of years, and I could still get by in the house with just a cane on bad days. But soon enough, I began using the rollator full-time at home.

Fast forward to 2020, COVID year. Due to MS and my compromised immune system, I spent an entire year teaching from my bedroom, only leaving for doctor's appointments. My mobility worsened from just staying home. I discovered it was a pretty common issue many MS-ers faced during lockdown. I needed something to make moving in the world easier. When I returned to teaching in person in the fall of 2021, I purchased a scooter I could disassemble and load into my SUV alone. My mobility kept worsening, and I was informed I had moved to Secondary Progressive MS (SPMS). With this type of MS, your disability gets steadily worse. Gone are relapses when your symptoms get worse but then get better. Now they just get worse. Every. Single. Day. Shortly after using a scooter, I had to move from an SUV back to a minivan. My legs didn’t always lift high enough to get into the SUV, and a minivan sat just low enough. Things were going okay, but my balance became problematic, and loading and unloading became difficult (some days impossible). I researched and discovered a lift that could go inside my van and lift the scooter in without me needing to disassemble it. This was a huge help. I could go places alone, and I was able to get into and out of the van with ease.

The next phase showed up last year. My left leg got worse; some days, I was struggling to pick up my foot high enough to get into the van. I could no longer get into the passenger side of the van; I had to drive or sit behind the driver’s seat. We made it work, not the best but doable. In the spring of 2024, my scooter was starting to have issues. Since I used it regularly, I needed to figure something out. I discovered insurance will cover a scooter if you get all the paperwork in order and you undergo a mobility evaluation. I did the evaluation, and it was determined I should move to a powerchair, covered by insurance. Awesome, except my van lift would be unable to move the chair in and out. Since I did not have $90,000 to purchase a mobility van, I decided to stick with a scooter that would work with my lift. That is when I started to really investigate the potential for a wheelchair-accessible van and if there were programs to help with modifications. Funny enough, not a lot of options out there if you work and pay for your own health insurance. People on the “I’m Not Drunk I Have MS” Facebook group gave me some ideas that led me to the Department of Employment and Economic Development Vocational Rehabilitation Services. They have a program to help people who need mobility help to get or keep a job. However, they weren’t entirely sure I would qualify. But, I did! This started a process that is still going on, six months later. I had an evaluation of my mobility, and it was decided I would benefit from a wheelchair van, with a transfer driver’s seat, and a removable passenger seat, so I wouldn’t have to always be the driver. This was fantastic news, especially since I am now battling to get my left leg to move so I can get from the back of the van to the driver’s side. I load the scooter using the crane lift and use a cane to get to the driver’s seat. Recently, my left leg will freeze and won’t bend, which has led to being rescued by amazing friends (and strangers) who have helped me walk to the driver’s door and push my left leg into the van. Or back up the van so I didn't have to walk; I could just get in the van. MS sucks is my official opinion.

Why am I asking for help? For the Department of Employment and Economic Development Vocational Rehabilitation Services to pay for the conversion of the van, it has to be less than 3 years old with less than 36,000 miles. My van is 6 years old and has just over 40,000 miles. This means to get a vehicle with modifications, I have to buy a newer van (chassis), and they will cover the cost of the conversion. In case you are wondering, once I get the van, they go through the bidding process for the conversion and other government hoops, then I will have to turn over the van for them to make the changes necessary (in-floor ramp, dropped floor, kneeling ability to reduce the incline of the ramp, transfer chair (driver’s seat will turn so I can drive into the van, lock down the scooter and move to the driver’s seat), and a roll-out passenger seat so I can park my scooter in the passenger seat, buckle up, and be a passenger). This means I could be van-less for a while. It's not a great situation, especially during the school year. However, a possible solution I was given is to purchase an already modified van, and they will put the approved conversion cost towards the cost of the van. This means I will need to purchase and finance a completely converted van. This is why I decided to start a GoFundMe. I have lived with MS for 21-plus years, I have paid for disability tools, a scooter, a scooter lift, too many doctor visits to count, and more so I can continue to live my life. I have never asked for help financially until now. To keep teaching (which I need to do), I must be able to safely move from my car to my scooter and back again, especially now. The only option to safely do that is to purchase a wheelchair-accessible van. I hope that I can get an already converted, less than three years old, with less than 36,000 miles van, which I will be able to keep and use for as long as possible. I know everyone has their battles to fight, but if you can find it in your heart to donate anything, I will be extremely grateful. Your donation will allow me to stay active, keep teaching, and not be a safety hazard to myself.

Thank you.

Paula