What Is Hemiplegia?: A One-Sided Life

The author’s MS has progressed in a way that leaves her left side completely paralyzed.

By Clare Willson

You could say I am half the woman I used to be, but only when it comes to mobility. Mentally I’m still pretty much firing on all cylinders.

When I heard the term “hemiplegic” for the first time I realized, Aha! That’s me! I had wondered for a while how to classify my physical impairments. I was diagnosed with multiple sclerosis (MS) in 1987; three sons later, a re-location from Great Britain to the US, a divorce, and ten years of single parenthood have led me to this point in my life. My paralysis, due to the progression of my disease, runs along a vertical rather than horizontal line: While my right side is relatively “normal,” my left arm and left leg are almost completely paralyzed.

Hemiplegia has its own unique set of challenges. With something like a stroke, spinal cord injury, or other traumatic injury, you are faced instantly with paralysis with no prior training, so to speak. I have had years to get used to and adapt to the gradual decline in my mobility and fine motor skills.

As you can imagine, with only one functioning arm, using a manual wheelchair is out of the question. I use a power chair, controlled with my “good” hand. Though I learned to write with my left hand, I am fortunate that I have always been ambidextrous. The switch to writing with my right hand wasn’t too challenging, although my scrawl could be mistaken for that of a second grader.

Mishaps

I am able to stand upright if I am holding on to the kitchen countertop, a piece of furniture, or a friend’s arm, and can lift my left leg about an inch off the floor. I can then gingerly walk sideways “crab style,” dragging my left foot.

However, if I get overconfident, I can easily end up on the floor. Only last week my sons had to rescue their fallen mother. I lost my balance as I stood up from my wheelchair and fell in a heap at the bottom of the stairs. So off we went on one of any trips to the Emergency Room, with a bag of frozen peas pressed against the swollen areas on my leg and arm. Fortunately, x-rays revealed no broken bones, just some pretty spectacular bruises.

Keeping a cell phone close to hand is crucial, as I am often alone in the house. I have become a big fan of Velcro and use the heavy duty kind to attach my phone to the arm of my power chair. It’s proved a godsend when I have needed help. I also have a phone by my bed. One morning I hadn’t positioned my feet correctly as I sat up on the edge of my bed. I rapidly slithered off, landing face down on the dusty carpet with my head wedged between the nightstand and the bed! How I ended up in that weird position I will never know. I was able to wriggle enough so I could stretch up and reach the phone to call the local rescue squad. It’s funny: we are now on a first-name basis as I have used their services so often over the years. If you are a hemiplegic, you know it is just about impossible to get up from the floor. Bending my right knee and pulling myself up with my right arm rarely works as the left leg is so spastic, it stays rigid and straight. My efforts cause me to flip over ending up like a ladybug on its back! The secret is not to attempt standing, or to fall out of your chair in the first place.

That is easier said than done for a stubborn, independent creature like myself. I do believe it’s important to stand upright when possible though, if only for a few seconds, as it improves blood flow and reduces foot swelling.

Unique Challenges

I use good old Velcro on the steering wheel of my van also (yes, I can still drive) to attach my cell phone. I prefer the speakerphone option when driving to avoid fiddling with an ear piece or Bluetooth. I think the latter looks rather like a small rodent perched on your ear anyway. I should mention also that I keep a long handled grabber in my vehicle for retrieving dropped keys and other items.

As a hemiplegic, there are many situations that are more than a little tricky. For example: pulling open a heavy door in a restroom. This requires the strength of the Incredible Hulk. I have to take my hand off the control of my chair to pull the door open, then try and scoot my chair through before it slams full force into the side of it, or my arm. It can take a few attempts and believe me a lot of muttering of bad words, but frequently some innocent bystander comes to my rescue.

One of my everyday techniques for opening envelopes, unscrewing small lids on my mascara or pill containers, involves using my teeth while holding the bottom half with my hand. At first I tried leaving the screw tops off my medicines, but learned my lesson when I spilled a glass of water on to my clonazepam pills, crucial to controlling my muscle spasms and spasticity. The result was sixty pills dissolved into one useless soggy mush. For larger containers like juice bottles, or a jar of spaghetti sauce, I wedge the bottle between my thighs and unscrew the lid with my right hand. I avoid buying canned foods as I have yet to discover a can opener that really can be operated with one hand, despite manufacturer’s claims. Believe me, I have tried them all.

I love a good party; who doesn’t? Socializing always lifts my spirits and is truly worth the effort, even if I am feeling lousy physically. However, balancing a plate of chicken wings on my lap and then being handed a glass of Merlot and a napkin, can throw me for a loop! Do I chug the wine down in one go, freeing up my hand to eat the food from the inevitably sagging paper plate? And where do I put the napkin which I need to wipe my sticky fingers? Under my chin like a child? Something usually ends up on the floor as I try to mingle while juggling my drink and food (I only hope it’s not the Merlot, as it’s one of my few indulgences). Mingling in a wheelchair is not the easiest thin, is it? On the other hand, I find running over the odd toe with the wheels of my power chair (and apologizing profusely) never fails to grab people’s attention and eases you into the conversation.

I have perfected grocery shopping. I take my large cloth bag and sit it on the footplate between my feet and load items directly into it as I drive around the store. No way can I balance one of the store baskets on my lap and drive in a straight line, so this is infinitely better.

Dressing

Other tips specifically for women hemiplegics on the subject of dressing: avoid buttons where possible or buy a little button helper that you hook around the button and tug it through the buttonhole.

Steer clear of clothes with any sort of belt; that will simply not work with one hand. Buy tops made of stretchy fabrics that you can thread over your bad arm and then pull over your head. If you wear sneakers, then buy a few packs of those curly shoe laces. They are stretchy and need no tying. This helps in wriggling the shoe on to your foot.

When it comes to jewelry, fish hook ear rings are the order of the day. The kind with little backs need two hands to reach up to secure on your ear. Also long beads or necklaces are easy for the same reason, unless you have a friend nearby to help fasten a short one. You can still be glamorous in a wheelchair. Even high heels are an option, not having to actually walk in them you can go overboard with your choices. I also buy my shoes half a size bigger to accommodate any foot swelling and help get them on more easily.

I am a firm believer in keeping my life as normal as my physical restrictions will allow. My boyfriend and I were even out on the dance floor recently in our power chairs, turning them back and forth to the beat of the music. We got many flattering comments and applause. People in wheel chairs dancing? Whatever next?

Only by using trial and error have I discovered these different approaches. With determination and resourcefulness, along with a generous dollop of humor, I can do almost anything. Oh, except put on a pillowcase with one hand. I’m still working on that one!

Clare Willson lives in Wise, Virginia. She won United Spinal’s first Independence Expo Essay Contest and is starting a career as a writer.