MS Gear, and What I Most Dread

gear

As a person whose symptoms impact my mobility, I’ve accumulated  some gear over last decade.  They are placed side by side in the accompanying photo, in the order in which I obtained them.

My first noticeable symptom was a droopy foot, which tended to drag across the floor when I walked. An AFO brace solved this dilemma. It gave my foot a permanent lift, which helped prevent me from stubbing my toe on the floor or having it get stuck in the carpet, which could result in a fall. I still use this today, although  the Velcro straps and padding have to be replaced occasionally.

As my foot and ankle became weaker, I purchased a cane. At first, I only used it when I was outdoors, because that was where I ran the greatest risk of spraining an ankle or stumbling over something that might cause me to lose my balance. Now my balance is shot, and I use it all the time when I am not in my house. I can walk without it as long as I am on a flat surface, although it is a struggle over long distances, but I use the cane more as a way of keeping my body from listing to the left, and also to help take some of the pressure off my back and hip. I have three that I use now.

By the way, if you need one, and want something with more fashion and style than the shiny metal variety with the grey plastic handles, you can’t beat the selection offered by The Fashionable Canes web site.

Next, after a lengthy battle with my insurance company to get the purchase approved, came something called The Walk Aide, which is a device that I strapped onto my leg below the knee. The Walk Aide sends electrical impulses down the leg, which lifts the foot.  This was a godsend when I first started using it. I didn’t need the foot brace or the cane, and I could literally jog with it. Unfortunately, once the progression reached my knee, it rendered the Walk Aide useless because my entire leg was screwed up, not just the foot and ankle.

Once the symptoms reached my knee, and made the joint feel like a hinge without any screws to hold it together, I obtained a knee brace brace. When I first strapped that beast on, it felt bulky and unnatural, but this changed after a few weeks, and I hardly notice it now. When I am at work, or am going to be in public for any length of time, I wear both the AFO and knee brace.

It takes about ten minutes to get both of these on or off, and is a bit of a production. The most maddening thing in the beginning was that both items had Velcro straps, which kept getting stuck together. I didn’t know which one belonged to the AFO or the knee brace, and wound up mistakenly taking some of the straps completely off the knee brace. Unfortunately, I never bothered to see how they were attached in the first place, so it took a lot of trial and error getting Humpty Dumpty back together again, stretching my patience thin. It was a good thing no sharp objects were within reach.

When I am in full battle regalia, my right leg is covered or supported by something from my toes to just below my crotch, and I have a cane in my left hand. Maybe I’ll wear a full suit of armor some day. Wouldn’t that be a sight for sore eyes.

I know the odds are not in my favor on this, but what I am trying to avoid is having to add the dreaded wheelchair to this list. Or as least defer it for twenty years or so.

Why do I find the prospect of wheelchair so alarming? Realistically, it would make getting around much easier, provided the environment I’m in is wheelchair friendly. Not having to walk so clumsily might also be easier on the back and hips, which constantly bark at me. Maybe I’d find it more palatable if I only needed or used it some of the time, where it was an option instead of a requirement.

Does what the wheelchair symbolizes bother me the most? A little piece of me dies every time the symptoms progress, because the functionality that is lost doesn’t come back. I know that. But there is something about walking on your own two feet that gives you a sense of independence you don’t realize is there until it becomes threatened. Will having to  rely on a wheelchair signify that I have lost the battle, that MS has gotten the best of me, and that the me who used to golf, go for walks, ride a bike, mow the lawn, and take care of all of the yard work, is dead?

No, that’s silly, because the truth is that I can’t do most of that stuff now, and haven’t been able to for years. But, my mind tells me the potential is still there, because I still have the use of my legs. In fact, I still do some outdoor work, and shovel snow. I can still vacuum the house, and clean bathrooms, although not very well. I’m running errands all the time. I push myself to do these things, in part to prove to myself that I still can, but to also feel useful.  If a wheelchair entered the picture, will all of that be gone?  I know the only way I will sit in one of those fucking things is because I have no other choice. How useful will I be then?

I hate being less than whole, and I hate being dependent. It’s one thing to have that happen when you’re really young or really old, but I’m neither. I should be at the stage of my life where I should eagerly plan for retirement, and look forward to the options that come with those years, instead of worrying about becoming a burden to those I love, and drain my finances in the process. All of these certainly impact why I find the idea of a wheelchair so abhorrent, but one reason stands above all.

I mentioned in a previous piece that I keep the fact that I have MS at arm’s length. I know it’s there, but have conned myself into thinking it isn’t that big a deal. I know it can get worse, and am aware of the other nasty symptoms I could come down with. I have blinders on when it comes to all that however, because the fact is none of it currently applies.

The reality of a wheelchair would burst that bubble, and shred my comfy cocoon of denial. I’d wake up one morning and realize, “Holy Shit! I’ve have MS!” Plus, it would make daily living much more complicated, and I have enough complications in my life.

I’m the stubborn sort though, so what will happen is there will be a period of grieving, then I’ll make lemonade out of the lemons dumped in my lap. My glass is always half full, you see, so something positive will come out of it. Maybe I’ll enter wheelchair races to…….well, just because.

I’ll figure something out. Resiliency is important when MS is your constant companion. I’m sure as hell not going to be someone who is miserable to be around.

I just hope that I don’t have to worry about it any time soon.

 

POST SCRIPT TO THE ACCESS TO HEALTHCARE PIECE: Congress is as it again. It is very possible that the latest proposal, which is to eliminate the Affordable Care Act and replace it with block grants to the states, will come to a vote next week. The only way that will occur is if the votes are there to pass it by a simple majority vote. If passed, this in all likelihood will allow insurers to have pre-exhisting condition clauses, effectively excluding us from the market. If that doesn’t scare you it should. If you don’t like this development, please make sure you let your Senator know ASAP, particularly if he or she is a Republican.

 

Author: Steve Markesich

I am loving husband, a doting father, a Red Sox fanatic, an aspiring novelist and MS advocate

4 thoughts on “MS Gear, and What I Most Dread”

  1. Been there, so I understand. Staying upright is a battle worth fighting. Keep being resourceful. You didn’t mention a walker or scooter, those come before a wheelchair and prolong your abilities. A rollator type walker allows you to save a great deal of energy when walking and the ability to sit when needed. A small scooter allows more mobility than a wheelchair. Any mobility device can be used to provide more freedom without being confining until it has to be. Wherever you are in your ms progression, exercise to maintain whatever still works, including your mind. If and when the time for a wheelchair comes, know that your worth comes from God, not your legs. You are not alone – others have and do feel the same. Keep your glass half full and smile as much as you can.

    Liked by 1 person

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