The Scooter Chronicles

A very nice young man named Adam from my local scooter repair place just left my condo. I stand at the door, looking at the three machines taking up my hallway, kitchen and living room. How the heck did this happen? How did I end up residing with three mobility scooters in a one bedroom condo? Well I'll tell you; but to understand how extraordinary this situation is you need to know a little bit about how I deal with my Multiple Sclerosis.

One of the things I struggle with daily is the knowledge that MS is a progressive disease. I was 55 years old when diagnosed and my first response was relief. Finally we could put a name to the problems I was having for more almost 2 years and start on a treatment. The road to diagnosis is a story in itself, but we'll save that for another time. I accepted the diagnosis and was grateful that up until then I had been pretty healthy and lived an active life. I thought I dealt with it fairly well, all things considered. My friends and family would tell me how strong I was and that they were proud of me. I had my moments of course, but I was doing OK. So I learned to give myself injections three times a week and educated myself about MS and got active in the local MS Society. I continued to work and sing and added fund raising to my schedule. Intellectually I understood that using mobility aids would probably be necessary at some point, but for the time being I still could walk unassisted. Unfortunately, that stage didn't last too long and soon I needed to use a device, (first a cane, then a walker). I was reminded that this was my future. A slow but steady decline. You see, there is no cure for MS yet but we do have drugs that slow the progression of the disease. My resolve to remain independent was still strong though; I didn't even want people to open a door for me. A bit extreme, I know, but that's me.

About three years ago my neurologist suggested that I would benefit by using an electric wheelchair to combat the fatigue of MS (which now is extreme when I walk for more than 2 or 3 minutes. Not to mention all the falls I took resulting in stitches in my head, broken fingers, etc.) What! A wheelchair? No way. Because I'm as stubborn as ever, I resisted but he insisted I leave his office with a prescription for one which I took grudgingly. I held on to it for a few weeks and almost threw it out but then stuck it on the refrigerator door with a Rebif magnet where it hung around "just in case".

A few weeks later I had a particularly bad fall and thought, what the hell; I could get one of those chairs through insurance and just keep it for the future when I might really need it. And I could tell my Dr. that I'd followed his advice and gotten one. So the adventure began with a phone call to Vista Health Care. I will spare you that part of the story but two months and many phone calls and faxes later they finally told me they could not give me an electric wheelchair. What they
would give me was a mobility scooter to use for one year, after which time if I it was still “medically necessary” it would become mine. Still medically necessary? Did they know something the rest of the world didn't? Since when do MS patients improve over time? Despite this ridiculous statement, a scooter sounded better to me than a wheelchair so I arranged for delivery. (OK, it was not quite that simple: the first one didn't clear the transom in my doorway, second one had a broken charger, third time was a charm - but add two more weeks to the two months; damn good thing I didn't really need it right away.)

So now I had a used, slightly beaten up large red scooter sitting in my condo, and of course I couldn't use it anywhere else because I had no way to get it in my Toyota Camry, nor would it fit. I dubbed the thing Big Red and and stuck it behind the living room couch, near an outlet since I was warned not to let the batteries run down. One day I got the notion that I could take it to the laundry room. I had to admit, it made doing the laundry much easier for me and thus I took one more step towards accepting the progression of the disease. Big Red and I did laundry that way for another year.

But more falls and bouts with fatigue followed and I decided using the scooter at work would really help me. Oh sure, I'd have to get a new car accomplish that, so it was not a small decision but who doesn't like buying a new car? I traded in the Camry for a cute little Rav 4 SUV. Next: how to actually get Big Red inside the SUV! Clearly I needed a lift installed in the Rav to do that and learned that if I bought one within the first year, Toyota would give me a rebate up to $1,000. Wow - that was pretty great so I started to research various lifts on the trusty internet. Who knew there were so many choices? After weeks of learning more than I ever wanted to know about mobility lifts I was still confused so I did the logical thing – absolutely nothing! Now I had Big Red in the house, a shiny new SUV in my parking space, and no way to combine the two.

As Ringo said, "You know it don't come easy."
It was August and South Florida was hot and steamy. I was glad to be sitting in the lobby of the Miami Hilton at an MS Women's Retreat and not in the outdoor heat. A woman rolled up and parked her scooter next to the couch and I did a double take: she was riding Big Red! (Well OK, his twin.) We started to chat and it turned out we just "clicked" as people sometimes do. Dale and I had a really fun weekend with my friends and her friends combined and we all promised to stay in touch. A few weeks later Dale called and invited me to meet her and her husband for a movie and dinner. After the movie I watched her husband put her scooter in their van so at dinner I asked them where they got the lift. Dale put me in touch with Russ who turned out to have his shop right near my office, so the next day I went there during my lunch hour. We chatted a bit and I asked him about a lift for my scooter. Here's how that went:

Me: So what would it cost to put a lift for my scooter in this car?
Russ: What kind of scooter?
Me: Uh, it's Big and its Red - I never got a manual with it and don't know the name but it looks just like Dale's.
Russ: OK, I can look that up. And what kind of lift did you want?
Me: Uh, like Dales I guess.
Russ: Well no, they have a van and you have an SUV. Plus, your door opens outward instead of up and we would need to modify the kit to have room to install it.
Me: Huh?
Russ: I could do an outside lift . . .
Me: No – I bought the SUV so I could keep the scooter inside.
Russ: Well, Let me makes some calls to see which lifts would work for this car and that scooter. Not everything is compatible.
Me: (Thinking: Ain't
that the truth!) OK Russ - let me know.

A few days later I got an estimate from Russ: $1,400 for a Bruno lift. Yikes! Sticker shock all over again. But I called Russ and he said he also got the Toyota paperwork for the rebate. So I asked, "What's the next step?" Russ said, "You bring a deposit and I'll order the lift. Then you'll bring in your car and the scooter and I'll do the installation. You could drop the car off in the morning and pick it up after work." Excuse me? Bring the scooter? I was pretty sure the point of all this was so I could get the thing in my car. How could I bring the scooter? Russ said, "I need the scooter to install a bar that works with the lift". “Oh, well let me figure out how I'll get it there and I'll let you know.” Click. Yeah, right. Back to square one.

I went home and told Big Red he would have to stay home a little longer. We don't need no stinkin' lift. This was the Universe telling me that it wasn't time for me to be in a scooter. . . right? So the summer was hot, the laundry got done, and I used my cane or walker at work, coming home exhausted at the end of each day, barely able to walk from the car to my front door but unwilling to deal with this issue any longer. As long as I was still managing on my own I thought I was doing fine. It would have been nice to have a scooter at work but no biggie. Uh huh.

OOPS . . .

Working a full day was getting harder. Weekends were spent at home recovering from an exhausting week. The only bright light became the weekly rehearsals with Master Chorale and BCC Chorus. Somehow, singing restored my energy. I think it's the breathing method used to sing, but whatever it was, I was thrilled to be able to still participate with these groups. So December rolls around and I'm leaving a Saturday afternoon dress rehearsal at BCC for that evening's concert when bam . . . next thing I know I'm staring at the brick walkway very close up! I tripped over the uneven brick pathway. My left hand broke my fall so my face was OK but ouch – that hand hurt and I could see it starting to swell. My fellow choristers helped me up and I'm mortified. Get me out of here! Over their protests, I insist I'm fine and I leave, driving myself straight to the the ER because I was pretty sure I broke a finger in that fall. Sure enough, along with some scrapes and bruises, I re-fractured the same finger from the year before. I perform that night in a splint and bandages, (what a trouper I am) and decide to re-think this scooter thing.

Sunday I got on the net and start looking on Ebay and Craig's List for a lift, typing with one hand and elevating my left as instructed. During that search I noticed a listing on Craig's List for a "barely used travel scooter" priced at $300. I start thinking, maybe if I had a smaller scooter, I could get it in the car in pieces by myself. So I call and drive down to Miami Lakes to look at the scooter. It's a cute little blue Dart. A peppy little thing, and before I knew it the seller had it in my car and I was writing a check. When I got home, of course I couldn't get it out of the car but then I realize: hey - the scooter and the car are together! Now if I buy the lift I'll be in business! I leave the Dart in the Rav and next day drive over to see Russ. Hey Russ - remember me? I'm ready to order that lift now and by the way, this is the scooter. So he does, and it's fine and I get the rebate and it ends up costing me a total of $700 for the scooter AND the lift which I think is a pretty good deal.

And I have to admit, that little blue Dart changed my life. Work was so much easier without all the walking. Conserving my energy translated into being able to do errands after work. Life became divided into BBD and ABD (before blue Dart and... well you get it). I was a convert, preaching the use of assistive devices to anyone who'd listen. I was a zealot - a true believer spreading the word. All was well in my world. Blue Dart and Big Red got along fine. Red holding down the fort at home and Blue helping me out at work.

But I know what you're thinking - that's only two scooters and I promised you a tale of three. Gentle Reader I will not fail you. But you'll have to be a bit patient.


BD (Blue Dart) served me well and I was thinking that despite all the hassle, $700 was a small price to pay for my new-found freedom. I could go to a mall (not that I wanted to, but I
could if I had to for some reason.) I discovered I could push a shopping cart filled with groceries up the ramp to my entrance, into the elevator and down the long corridor to my door while riding BD. By positioning it just right BD did all the work. It was amazing and I grew (uh oh) dependent upon it. And just about that time BD began to act up. Oh it was little things at first; the horn stopped working; the batteries seemed not to charge fully; annoying but not critical.

One day as I was going up the ramp BD decided he'd had enough and just stopped. I was halfway up the ramp, had some packages with me and was stuck. When I tried to go forward BD just said click click click. A neighbor helped me wheel him back in the Rav and I got to my door using the shopping cart I kept in my car. Back at work the next day I got on the net, culled a list of repair places in my area and started making calls: "Hello, do you repair mobility scooters? Yes? Great! Oh, you close at 5? No weekends? OK Thanks." Finally I found a place with a nice guy who agreed to stay open for me until 6 PM. It wasn't far from my home so I dropped off BD and Adam promised to call me when he was ready. He thought he knew what was wrong and could do it overnight. It was Tuesday and I'd have BD back by Wednesday. Hooray!

Work the next day was difficult; using my cane to get around the building was challenging but I kept telling myself it was good exercise. At 4:30 I called Adam but alas, BD wasn't ready. And he wasn't ready on Thursday or Friday either. Each day I struggled with walking a lot more than what I was used to. The fatigue returned quickly and by Saturday I was spent. Finally, Adam called and said I could pick up BD at 1:00 that day. When I got there, Adam told me the problem was a relay switch in the computer that controlled the brake. He was able to fiddle with it enough to get it working but warned me it could happen again. The repair cost $75 for labor as no parts were involved. I was so grateful to have BD back I barely paid attention to the "it could happen again" part and home we went. Whew – now that was a lesson in dependency. But it also taught me that yes, I really did need to use this aid. I vowed to get to the gym and on the treadmill to build up my stamina but of course, I never did. BD and I were together again and, like any addict, I went right back to my old routine. Oh how foolish I was.

About a month ago I was moved to a new section within my division to cross train and learn a new function: Recording. We record all the documents that come into the County. After 4 years in the Tax Section I did not appreciate having to learn a new job, but about 15 of us were moved all around the division to cross train. So one Monday morning BD and I reported to my new office. Surprise! They gave me a great cubicle - very large, room for BD and close to the Ladies Room! I was happy so far. The training was going slower than I would have liked but on the plus side: no stress, no phone calls from the public, a nice group of people who were very welcoming, and a lot of faces I already knew from the tax section. My supervisor was nice and while my brain is rotting from disuse, I have uncharacteristically decided to shut up and enjoy the peace, quiet, and stress free environment.

While tooling around on BD near the front counter, a customer with a county badge said to me, "I have the same scooter at home if you ever need parts." He explained it was his mother-in-law's but she had passed away and they just put in in the garage, keeping it charged. I said, "Want to sell it?" and he told me it was listed on Craig's List but he hadn't gotten any calls. "How much are you asking", I said. "$150" he answered. "SOLD!" I said. Gee - I could use a better seat for BD and the batteries alone would cost over $100. My basket was beat up and I just thought it would be good to have extra parts. We exchanged phone numbers and the next day after work I drove with a friend to Coral Springs to see his scooter.

It was not in great shape. It looked just like BD except it was a Sonic which was the original. My Dart was a knock off! He explained his mother in law had used it every day and the batteries were never replaced but were OK. Still I thought, the seat and basket alone are worth the price. He put it in my car in 4 pieces and my plan was to take it to the office, have one of the guys help me get it out of the RAV and once in the office, switch out the seats and basket. Then I would leave it in the office and keep BD in the car because remember, only BD had that extra piece needed for the lift.

So I did just that, except no one, including me, knew how to hook it up again. I did watch when it was taken apart but, hello, I have MS people. Guess my brain didn't process the process. There were 4 of us standing around the broiling hot county parking lot trying to put BS (Blue Sonic y'all --get your minds out of the gutter) back together again. Finally, one guy from the engineering department wandered over, surveyed the scene, and assembled it in about 2 minutes. He showed us how to do it and duh, we all felt pretty stupid. So I rode BS into the office. One of the guys rode BD and once inside, I switched out the seat and basket. Perfect! At the end of the day I rode BD back to the car and went home feeling very savvy and accomplished.

Next morning the light bulb went on in my head: if I leave BD in the car, how do I get from the car to the office which was in the center of this very large building? OK – so there was one little detail I forgot about. I'd have to walk it. I hobbled down the long, long corridor with my cane and collapsed in the chair at my desk. This would not do! My solution was to ask some of my co-workers to help out. Whoever got to the office first in the morning would ride BS to the parking lot and it would be waiting for me when I arrived. To go home, we would reverse the process and someone would take it back for me. What a great group of people! bThey all were arguing over who got to ride first. I was all set. I'd come a long way baby: from resisting the notion of a wheelchair to actually asking for help.

But wait, you say. That puts two scooters in the condo and one at the office. How did three get to the condo? Ah well, all will be revealed soon when our old friend Adam makes a return appearance.


One week to the day after purchasing BS, my beloved BD simply stopped. Would not move. Battery charged? Check. Key set to on? Check. Yellow thingy in the back in the correct position? Check. When I pushed the lever to go forward I heard click click click click. Sounded familiar . . . oh man - that brake relay! It was, as Casey Stengel said, deja vu all over again. I disengaged the motor, rolled BD to my door and there he sat. In the kitchen. Not moving. Sigh. I was tired. I was aggravated. I was sweating. I was on the verge of freaking out. But then I thought - hold on girl. This is exactly why you wanted two scooters - to switch out the parts. You got BS just in time! So after I rested and had a large glass of ice water (it's unbelievably hot in Florida lately), I tackled the job of removing the seat, taking out the pin and pole that support the seat, and I removed the piece that goes to the lift. I could take it to the office with me tomorrow and put it onto BS. Then use BS alone until I could get BD repaired - if that was even possible. Adam had told me that relay would eventually fail and, "funny, here's that rainy day." I took myself to the shower to cool off, again feeling strong and proud that I was able to stay relatively calm and solve the problem.

Adam remembered me when I called the next day and told me they would be open Saturday from 1 to 4. I said I'd try to get the scooter over to him (it would mean doing that seat removal process all over again but that couldn't be helped as I only had one of those lift parts.) I used BS back and forth all week and BD seemed content to just sit at home with Big Red and relax. Maybe he was tired too and just needed some down time. When Saturday rolled around, the heat index was well over 100 and I did not want to go outside but I had to know what BD's fate would be.

So I got myself dressed and drove BD to the shop. In my haste I left my cell phone home but didn't realize it until . . . OMG! The shop was vacant! The sign was there but the door was locked and peering in the window I could see the cavernous space devoid of even a spare bolt. Of all times to be without my phone. The Asian man in the next shop told me they'd moved but he didn't know where. Great. Drove home, hot, tired, annoyed, and called Adam once I reached my phone. "Oh, I'm so sorry", he said. "I thought of that after I hung up with you yesterday." Duh - so why didn't you call me back? But I held that thought because the next thing he said was: how about if I come over to you? WOW! A house call! "That would be amazing and so helpful because I don't think I could manage to get out again today." Adam said he completely understood and would be over within the hour.

Sure enough, 45 minutes later, there was Adam standing at my door, tool kit in hand. He looked around, saw the two blue scooters and said, "Oh, I didn't know you had twins!". Then he spied Big Red in my living room and said, "Is that the mama?" I was laughing so hard I had to sit down. Adam looked at BD and confirmed that yes, it's that darn relay. He tinkered with it again but this time it was no go. We discussed options: switch out the front halves; switch out just the computers; which seat should go where? Since I really preferred to ride BD, Adam switched out the computers which was a much bigger job because he had to take apart the front of both scooters just to reach the components. But he did it without complaint - he just wanted me to have whatever configuration I wanted. We chatted as he worked and he said if I had to buy a new computer part it would cost about $600. I really got a bargain!

I told Adam the story of how I got Big Red from my insurance company but couldn't get him in my car so we just did laundry together. Adam said Big Red was definitely a female and he was the expert so I said OK, sure. Then he asked why not put the lift bracket on Big Red which was a much more comfortable scooter? I said I'd tried that but instead of a pin, Big Red had a large bolt to hold the seat support pole and I couldn't budge it. "Well let me try", he said. Wow - why didn't I think of that? Big Red had been confined to the house for so long, I never thought of her going outside. He managed to remove the bolt and said, "I can put it back but not tighten it and if you decide to use it with the lift, you'll be able to remove the bolt and install the bar; or I can put the bar on it for you now. I can even see if the pin from one of the other scooters will hold it instead of the bolt." What should I do? I decided that BD deserved a much needed rest and made the decision to install the bracket on Big Red. Adam took care of that and then continued to put back all the parts to both blue scooters. BD was working and, lo and behold, when we turned on BS, he was working too! Three working scooters in my condo! (Oh yes, Gentle Reader, I keep my promises.) Adam explained that sometimes just the process of removing and installing the computer is enough to jog the relay into operation. But again he warned that it will fail again so I should keep it charged but not use it too much.

The amazing and wonderful Adam refused my offer of iced tea, cold beer, or even water. He wanted me to go downstairs with him on Big Red to be sure I could get her in the RAV. It worked! I will need to make a small adjustment to the position of the bar but that's easy and it works. I hugged Adam and thanked him a million times and said, "How much should I write this check for?" "Oh, $75", said my hero. WHAT??? He had closed in shop in the middle of the day, spent 2 hours at my house making sure everything was perfect and he only wanted $75? I said, "Come on Adam, that's not enough for everything you did". He said, "Sure it is - I got out of the store and enjoyed talking to you. I'm just glad I was able to get things as you wanted them." I wrote the check but felt guilty. It still wasn't enough in my mind but, hey, I'm a working girl and I need to budget. Adam said goodbye and I rode back upstairs thinking what a great fellow he was and how his mother must be so proud of him. You did good Adam's Mom!

So there I was - looking at three working scooters in my condo. (This is where we came in in case you forgot - the saga was longer than even I thought it would be. Congratulations to those readers who made it this far!) Tomorrow I'll take Big Red to the office and boy will the gang be surprised! I hope Big Red will do OK on the outside - she's not used to being around a lot of people and is pretty shy. I'll have to introduce her to the world in baby steps. Just home and office at first. Malls and festivals will have to wait. BD is now sitting in Big Red's old space behind the couch. BS is in my den closet. And while I'd like to close with the moral of this story I'm not quite sure what it is. Be prepared? Accept your limitations? Never give up? Learn to adapt? Grab a bargain when you see one? Celebrate the good in people? Think before you freak out? Maybe all of the above. If anyone out there reading this saga has one phrase that sums it all up, please let me know. Until then, see ya at the scooter races!

Sunday, June 20, 2010