Chondrosarcoma – ah shit, bob's sick

For the past six months I’ve occasionally written posts on wheelchairs and my struggle to find the right chair for me, but not only for me. Something that would be considered a decent chair for just about anyone  that spends any amount of time in a chair.  It’s important  to realize that it not only needs to be safe,  reasonably easy to operate, easy to maintain, easy to transport from one place to another,  and comfortable too.

We’re all pretty much accustomed to the standard  type of chair that you see in hospitals, or the usual type you rent for short term immobility, and it seems most people accept those chairs as good, some even say they’re great.  While you’re pushing old grammy down the nice polished smooth floors of a hospital, it’s hard to imagine needing anything more in a chair. It rolls, transports the user or patient to where-ever they’re going and that’s it primary purpose.  What else could you need or want?

This past January (or about January) a friend had lent me this type of chair to use until I could get my own. Our insurance company requested a prescription from my doctor (which is standard fare), and that they would pay for the chair, minus twenty percent. Well, that sounded like a good and fair deal to me.

So, I thought I’d try using the borrowed chair for some tasks whether or not I actually needed it at the moment , just in order to try and get accustomed to using it. I can still get around a bit on my legs, and as I’ve mentioned many times in this blog, most daily chores I can handle without any assistance.  What I was looking for was experience and to learn about it.  Someday, the doctors say, that’s where I’m going to end up full time  …  so why not get ready?  Even now, I can’t take the dog for walk, can’t walk around the stores, etc,  etc.  Short distances, I can do, and without any problem. About one-quarter city block is the maximum I can go, and it’s really amazing how much of our lives that covers.  But there are still times when you want, or have, to travel further.

After walking a bit, my legs tend to go numb and the feeling just drains right out of them. This makes it impossible to walk of course, and then I have to sit and wait until the feeling comes back and I can feel my  feet again … and then I’m fine and can continue on. What that means on a daily basis is that it can take me an hour to walk a block …. and that’s where the need for a chair comes in. Once my legs are tired, it can take the remainder of the day to really fully recover.

Once your legs are tired, you have to sit down … I have to … no matter where I am or what’s going on around me. Sitting on the ground is next to impossible because once I’m down … it’s really hard to get up. It’s a kind of messy situation and it requires is knowing your limits and preparing for it.

Anyway, as an experiment, I got in the borrowed chair and tried to get the “feel” for what it’d be like. Actually, I’d recommend this practice to anyone. Spend an entire day in a wheelchair and see how much of the daily things you do, still seem like simple tasks.  See what your arms feel like. Heck, you don’t even need to spend the day … just spend a few hours … you’ll get the idea quickly.

My goal was to wheel out of my driveway and down to the end of our property line. We live on a relatively flat ground, at least by Vermont standards and I thought this would be a great test. It’s not very far, maybe three or four hundred feet. I figured this will be a breeze and even thought about going down the road a bit further cause that’s where we’ll often walk the dog. There’s a great little swampy area down there and the dog loves walking that way to check the frogs and other interesting swamp creatures that reside there.

I settled myself in the chair, lowered the foot rests and gave both wheels a pretty good push … and away I went. Now from where I was to where the driveway and road meet is about twenty feet or so, and the road sits slightly higher than our driveway. You have to roll down into our driveway, which in turn means you have to roll up, to get on the road.

Well, to my surprise, I couldn’t get the chair out of my driveway. I just couldn’t believe it! I struggled using all my arm strength to get up this slight incline. Sher was with me and I asked her to give a hand, and when she did … she struggled too. To make a long story short, by the time we got back to the house, we were both exhausted.

I took the life out of my arms for days and I thought to myself “how the hell do people do this?”.  Now I not be “weight lifter Joe” or considered an athlete of any sort, but I’m no slouch either. I’ve done plenty of lifting and work in my day and always considered myself in reasonable shape. I may not have been able to run a marathon, but decent shape.

I was missing something, something wasn’t right. I see lots of people in wheelchairs getting around in tougher situations then this … but how the heck are they doing it? I became concerned and depressed that I may not be able to handle this … and that’s “not” where I wanted to be at. If there’s one thing I’ve insisted on since all this cancer stuff began, it’s that I stay independent as long as I possibly can. That includes getting around.  Around the house, around town, to and from work and even as much as I can in taking care of the house and grounds.

I came back in the house and started to research wheelchairs, what people can and can’t do in them, what’s practical, and what’s not. You have to remember, prior to this, Sher or I really had no wheelchair experience at all. Not in using one, not in pushing one … just no idea about how this entire wheelchair world worked … but I was going to find out. My attitude is and always was, if someone else can do it, then so can I …. it just takes a better understanding and some knowledge of the subject … so I went after it.

At first I thought, it could be me. Again, another friend came to the rescue with a pair of dumb bells, and I went out and bought a few others that were a bit heavier and started a nightly routine of exercising my arms to build up more strength.  Often while I sat at my pc in the evenings, I kept one hand on the keyboard and the other holding a dumb bell …. constantly lifting the weights every chance I got.  Doing arm curls, forward and backwards to build that strength up.  Yep, many of these posts have been typed single-handed!

The insurance company said I had to wait about six weeks for the chair even after three seperate doctors wrote prescriptions for me, so I figured I had time enough to build the strength up in my arms … although I wasn’t thoroughly convinced that was the problem, there was no harm in doing it because eventually it’d help no matter what. More investigating was needed, and I turned to my old favorite research tool “google” to more  the answers.

Within minutes I had stories and sites about dudes that have done all kinds of things in chairs … even freakin’ mountain climbing. I mean going up trails to the tops of mountains that would put any average two-footed hiker to shame. I was amazed, just couldn’t believe the accomplishments of some of these folks … and all I wanted to be able to do is get out of my driveway!

I started looking at the chairs, and realized there was a huge difference in what they had, and my borrowed chair, and what the insurance company had offered to get me. Oh no, I thought, this is the kind of chair I need and want. This type of chair will help make me independent. But can there be that much difference in the type of chair you’re using? …

Over the next few weeks I tried the borrowed chair again and again. Although I did get better and slightly more distance out of it, it still wasn’t “cutting the mustard” as far as being independent was concerned. That just wasn’t going to happen with this type of chair.

I may not need something I can climb mountains with (although I wouldn’t mind trying sometime in the future), but the design, engineering and strength is what was interesting to me. It left me thinking “could a well designed and engineer chair make that much of a difference in the way a wheelchair moved along?”. Well it can, it can make all the difference in the world.

I decide right then and there, and was convinced,  that I if I had this type of chair it would provide me with the independence I wanted and provide me with a fighting chance to do this.

Now to deal with the insurance company in getting what I wanted and needed.  It works pretty much like this. The insurance company (any insurance company) will get you a wheel chair in order for you to get around your house, but … if you need it for outside use … it’s your problem. From what we were told is that they don’t care if you leave your home, no matter what.

Hey! I wanted to go to work and like I’ve said before I want to be independent as long as I can …  what the hell good is a chair that will get me around my living room? I’m not giving up … I want to push forward. It was only a few weeks away from when the chair was to be delivered and I knew it wasn’t going to be what I wanted … but at the same time there wasn’t much I could do about it.

The doctors had written the prescription as a permanent need, in other words, not a rental, so I thought I’d have at least a chance at getting something that was good enough for me. Like I said, I didn’t need the super sports model, but something that was really meant to help keep one rolling along over most terrains and conditions.

It’s a funny thing, and not to get off track, but it seems that most of the insurance companies, doctors, nurses and state government agencies really struggle to fit you into a “box” that isn’t the healthiest mentally and physically for you.  They are constantly discouraging you from “working and supporting” yourself, offering the most  help to only those that seem to take that route and almost no help for those that wish to do as much as they can for themselves. I find that really odd … since it costs so much more money to support and help those that could do more for themselves.  Especially during these trying financial times.

Not everyone can help themselves or work, and I understand that …so we our society needs that  … but there seems to be no in-between help. If I were totally disabled, quit my job, collected the benefits offered,  I’d have no problem getting what I needed. Well, I don’t say that from personal experience, but certainly it seems that way.  If I quit everything I was doing and sat at home, they’d support me, but because I want to try and do for myself, they seem to offer nothing. Very strange.

Anyway, we got in touch with local Medical supply company (no names) and explained the situation, they offered to help. They asked for the prescriptions to be sent to them and that they’d arrange it with the insurance company.

In the meantime, the chair the insurance had sent me was exactly like the borrowed chair and we didn’t except delivery of it … sent it back.

The medical supply company arranged for me to see a physical therapist (even though I had three prescriptions) to assure that the chair was needed. OK, I understand that, there’s an incredible amount of fraud out there taking advantage of free money from states and insurance companies, but we’ll leave that for another discussion. Once approved,  they measure me for this custom chair and told me it’d be another eight weeks. I was bummed at the wait time, but figured it’d be worth it to have a chair that could deal with the demands I’d be asking of it.

They bought several models with them and I had the opportunity to try them out … and what a difference it made. I couldn’t believe it. I got in that chair and in no time I wheeling all over the place. I asked if I could take the “sales model” home!

Expense – Now these custom chairs cost anywhere between five to ten times the amount  of the standard chair they usually give you … but it works. That’s means my twenty percent was higher too … but I was excited and couldn’t wait.

The eight weeks went by pretty quickly and the results are fantastic. I continued with the exercises and  I now feel confident that could … one, travel to almost anywhere and be able to get around including cities or rural areas, you name it … and two, that I got the right product rather than just accepting what was to be sent if you kept your mouth shut and didn’t speak up with your needs and desires.

So in the end I think it’s important that you speak with your insurance company and explain what’s what. I have to admit that once they understood the need, they happily took the original chair they sent and replaced it with this beauty.

I should also say, that the borrowed chair came in mighty handy when there was nothing else and certainly better than no chair at all … but, nothing like this custom chair.

Now the photos don’t really do justice to this chair and sometimes it had to see the engineering that went in to it … but believe me … it’s there. No more struggles to get out of my driveway and down the road. Last week I walked the dog with Sher and Al for the first time in over a year, and I was able to bring Sher to the Mall and go around with her. I know that may not be exciting stuff …. but when you can’t do it, you miss the simplicity of life. Now,  every push I give the wheels I get equal if not better return in distance. The expenditure of energy put into moving, is worth it. No less than the trade we used to in walking.

Here’s a few photos and I’ll try and point out some of the differences:

Looks like a basic chair from here. The difference to point here is the overall weight. Standard issue chairs weigh about forty pounds and only get heavier from there. Add leg rests, arm rest and a few do-dads and you can reach fifty pounds easy. Again, for an able bodied man that’s not too bad, but ask your wife to pick up fifty pounds and wedge into your car trunk … it’s tough. This chair, fully dressed comes in at about twenty seven pounds … now just about anyone can handle that. And that’s half the dead-weight you have to wheel around.

The back carries a backpack for carrying stuff … you know, there’s always stuff to carry … even just your wallet and keys can be a hassle, so the light weight bag on the back is real handy.

Instead of being made out of pot-metal, the entire frame is made from high grade aluminum and the front casters are also aluminum and semi-pneumatic. They hold just a little bit of air, the reason for that it softens the ride just enough without causing any drag.

The rear wheels also use 70lbs of air pressure, again it softens the ride a little. You’d be surprised how the hardness of a totally rigid ride can affect you. Sometimes you can be more exhausted from the ride then had you expended your last energy to walk. They also come off the unit for repair, simply by pushing in the center knob … pop! they’re off in a second. In the event you need to fold your chair up really small … this is a huge advantage.

Rear brake assembly works excellent.

This whole chair comes apart with two simple “allen wrenches”  and can fit easily into the back of any small car. The trunk of my new 2010 Toyota Corolla S, can carry it with room to spare and it’s light enough to bring in and out anytime. It will set you back a few bucks … but well worth it.

As a final note, this chair has provide me with the freedom I was looking for, and even though it tooks a total of six months to get in my hands, it was worth it. So as a conclusion I’ll say that if you plan to be in a chair, or even if you’re a care-giver helping someone else, or whatever reason you’re looking at chairs, I’d recommend one something like this.

No more struggling, no more asking my wife for a hand.  My son and I named it “Bentley” after a wheelchair bound video character … next week the name and a little pin-stripping is getting put on by our local automotive graphics shop!