I started this blog because I had something to say. What I didn't realize at the time is that so many of you had something to say too. In my 18 months of building this TravelScoot community, I have met interesting, resourceful, and motivated people. We share not only a bond of mobility challenges, but a problem-solving outlook on life. We use our TravelScoots as a tool to aid mobility. Mine has become an extension of my body.
This week I met Katy, a new TravelScoot owner. When she rode her TravelScoot for the first time, with her granddaughter running alongside her, laughing, she felt like she was reliving her 8th birthday, cruising the street on her new pink bicycle, a 26" Rollfast.
Katy gave me permission to share her story with you all. Enjoy!
First of all, thank you, thank you for this blog! It's simply wonderful to read about everybody's adventures.
Some background... I have a form of muscular dystrophy that has resulted in significant weakness in many muscle groups in my body, especially my hips and thigh muscles. I wasn't diagnosed until 2002 (at age 47), and was prescribed high doses of prednisone, which turned out to be exactly the wrong thing to take. After gaining about 80 lbs., I also developed steroid myopathy; I believe this was the main cause of the leg weakness, as the form of MD that I have is supposed to primarily affect the face, shoulders and upper arms. Anyway, between the MD and the side effects, I asked my employer for an accommodation under the ADA to work mostly from home. I've gone into the office periodically to do those tasks that I can't perform at home. I bought a rolling walker for support and to help me deliver heavy loads of manuscript to various departments. Eventually, I had to sling a toilet riser underneath (bless those bungee nets!) as it was becoming increasingly difficult to get up from the standard height toilets. As the years have passed, I've had to raise my sofa six inches, bought a uplift cushion to get out of my kitchen chair, and bought a minivan, not only for the higher seat, but to haul the walker without having to fold it up. This year, getting into the building at work and walking the long hallways, even with the walker, has become increasingly slow and painful. Lifting the walker into the car (behind the front seat through the side door) has also become nearly impossible. And then my employer decided to tighten up the work-at-home policy.
Technically, I am still covered under the ADA accommodation, but our work is becoming more collaborative and it has been communicated that we won't be able to work quite so independently in the future. I can't afford to be left in the dust. Furthermore, I haven't been in a grocery store since last winter because I can't use the store-provided electric carts. The seats are too low. If I have to bring in a cushion, how do I get it into the store? I have a hard time raising my arms up higher than shoulder level, so getting things from the higher shelves is a problem. I used to be able to pile over $100 worth of groceries on my rolling walker, but that has become difficult, too.
Enter TravelScoot! After looking at various mobility chairs and scooters, I believe I have found the best option for most situations. I seriously considered getting a mobility chair to leave at the office, but then getting in and out of the building would still have been an issue. I've often joked that I needed a burro to haul everything--the toilet seat, the laptop bag, the booster cushions, the half-step cane, etc. I expect that my TravelScoot will be my beast of burden. My employer has agreed to get me a higher work chair, loosen up the tension on the restroom doors (was trapped in one last year until the cleaning crew came along!), and to provide toilet risers in a few bathrooms around the building, but I'll still need to carry a lot of stuff whenever I go out.
Today, for the first time in a few years, I rode around the block! My 19-year-old granddaughter ran next me, laughing, shouting to me, "Are you having fun??" I was having a blast, although I'm also mindful that if I fall off or tip over, it'll take two men to get me on my feet and it won't be pretty. I'm still working out the best way to get it in and out of the car. I can't lift it completely assembled, and the pulley idea I had (which I posted before under Anonymous) isn't working out as I'd hoped. I did have some luck testing out some shelving boards (3 or 4 ft. long) as a mini-ramp, using the throttle to have the TS go up under its own power (I turned the tiller around so the throttle was on the left since I stand near the driver's door for balance). I can disassemble it if I have to, though, and I might have to do that for now as I'm supposed to be at work on Monday (thankfully only 2 days/week for now). To get on the TS, I have to sit on the seat sideways and rotate. It's a bit difficult to get my leg through, but I am a Gumby. To get up, I have to swivel again to the side and put my hands on my knees with my elbows locked and push up. I'm having no luck getting the brakes to lock (granddaughter does it with no problem), but I'll probably have the TS against a wall or some file cabinets if I feel unstable. I put a headlight and tail light on TS because I know I'll have to leave work in the dark. I bought the cup/bottle holder, too, and the velcro hooks. The toilet seat is resting comfortably on the bottom frame. Now I have to think of a great name for my new friend!