Tag: handicapped

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Life with multiple sclerosis

New Kitchen Appliances

Not my kitchen.
Image courtesy of geappliances.com

We had a small leak under the house that managed to spray a thin stream of water upward in just the right spot to soak a section of subfloor and buckle the overlying hardwood floor in our kitchen. This led to our kitchen floor being replaced, which meant that all the cabinets and appliances had to come out of the kitchen. That would have been bad enough, but since the majority of the bottom floor in our house is hardwood, nearly everything had to be moved out, including us, when they sanded and restained/finished all the hardwood for a nice uniform repair. The silver lining is, we got to make some changes to the kitchen, including improving accessibility. Among other things, these changes involved replacing our aging appliances and for the first time in our lives, we found ourselves researching and considering handicapped friendly appliance options.

Didn’t know there were such things? Don’t be ashamed. Until a month ago, neither did I. Many countries have laws and/or guidelines in place for something to be labled accessible. In the US, it’s the Americans With Disabilities Act, or ADA and apparently there are criteria that make appliances ADA compliant. Most of the criteria are things that I hadn’t considered and found myself saying things like, “Wow, that makes sense.” and, “Hmm, I never would have thought about that.” over and over when I looked up ADA compliant appliances.

I won’t try to copy verbatim the handicapped criteria or endorse any particular brand, since I’m too new at this to really have a valid opinion, but I will provide a link to the website that I found most useful when looking for what exactly makes an appliance handicapped accessible/ADA compliant.

(Full disclosure, none of my new appliances are this particular brand, but their site does a really good job explaining the criteria .)

https://www.geappliances.com/ge/ada-compliant/

I use a wheelchair full time and have significant arm and hand weakness. I’ve learned two things so far that are specific to my situation that I’ll pass on to anyone in a similar one. First, use the seatbelt, etc if your chair has one. An accessible oven/range minimizes any reaching you have to do, but there is still some bending and extending involved and being secured to your chair is super helpful, especially if you have balance issues. No, I haven’t fallen into the oven or burned myself yet and I don’t intend to either.

Second, consider your angles. My wheelchair elevates, so I can rise to the height needed so I don’t have to reach overhead and risk dropping things on myself. That may not be an option for you, but consider which angle you approach the stove, refrigerator, etc. For example, my strong side is my left, so I tend to angle that side into the appliance, rather than approach it head on, or from the right. There’s a little trial and error to get this right for the individual appliance or task.

I have always liked being in the kitchen, cooking and especially baking and, in all modesty, I was pretty good at it before multiple sclerosis started taking my abilities. I know my limitations and I grudgingly accept them, I guess, but that doesn’t mean I like them, or that I’m not constantly looking for ways around them. It’s nice that there are appliance options that make it easier to get around some of these limitations.

Categories
Life with multiple sclerosis

Walking Dreams

Photo: harshvardhanroy/Getty Images/iStockphoto

Multiple sclerosis is not very conducive to a good night’s sleep. Spacticity was my biggest problem until the baclofen pump relaxed my spasms, rigid muscles, and hyper-reflexivity. I was essentially a limp dishrag immediately after the pump implant, but the relief from spacticity and actually being able to sleep through the night was so amazing that even if I’d never improved after, (I did), it still would be worth it. 

I don’t mean to imply that spacticity was the only obstacle, just the biggest. I still have an MS bladder that defies even the best planning and occasionally, whatever the opposite of fatigue is, wakes me up at odd hours and keeps me awake.If MS could just be a little more considerate and schedule fatigue during evening hours only, that would be great. It is, however, anything but considerate and accommodating.  

There are a lot of perks of being able to sleep soundly again but the one I want to talk about today is dreaming. I dreamed when spacticity was at its worst, but very inconsistently and I rarely had a complete, undisturbed dream, or could remember my dreams in any sort of detail. Usually, when I dream now, (or pre-MS), I’m aware that I’m dreaming, but I can’t direct the action or otherwise control it………..so lucid? Not lucid? Lucid…ish? Meh, it doesn’t really matter. What does matter (to me, anyway) is that I sometimes dream about myself with MS. Do you?

Most of my dreams are of the…..normal(?) variety. Being late for school (even though I haven’t been to school in decades), being unprepared for a test, or a recurring dream of having an apartment in another city with important things in it that I’ve forgotten to pay the rent on, etc, etc. Like I said, most of the time I’m aware I’m dreaming but it’s like I’m watching it as a member of the audience, shouting out advice, or insisting that the main character would never do that, or let that happen. 

My multiple sclerosis dreams seem to come in three flavors. Sometimes I’m surprised by my disability, (what I was once). I’ll be behaving normally in the dream, walking, running, that sort of pre-MS stuff, when I’m somehow reminded that I shouldn’t be able to do that (maybe I hear myself shouting from the audience) and like Cinderella at the ball, I struggle back to my wheelchair before the clock strikes midnight. It’s a little odd that my wheelchair is even there in a walking dream, but such is the nature of my, “Surprise!!, you’re crippled.” dreams.

Sometimes I dream about myself having MS and being aware that I have it, (what I am now). I dream about myself in a wheelchair, being fatigued, or dealing with uncooperative limbs. I even dreamed recently about being in a small fishing boat in my wheelchair and yelling from the audience, “What a load of crap. How did you even get the chair on that boat? Is it even strapped down? Just wake up! This is completely unrealistic!”.

Occasionally, I dream of getting better, (what I want to happen). One dream that sticks in my mind is of me walking on a trail in the woods using two trekking poles. In the dream, I’m aware that I have MS, but am recovering somehow, (the dream is a little vague about the “how” part). I stumble on the trail and run a few steps to keep from falling and then keep running slowly and awkwardly, laughing almost hysterically at the return of an ability that had once been taken for granted. 

I know they’re just dreams and I treat them as such. Walking, much less running, may never be in the cards for me. As long as they keep it reasonably realistic most of the time, I’m ok with my dreams hoping for the future too. I mean, it’s my unspoken, subconscious hope after all, right?

Categories
Life with multiple sclerosis

The MS Pirate

In last week’s post, I talked about a new magazine being a fresh reminder of my disability and how it was something of a minor reset of the grief cycle. Fortunately it was pretty minor and I recovered quickly. My recovery probably had very little to do with my own sense of mental fortitude and more to do with a mind occupying family trip to Legoland Florida and Disney World. It was fall break for the kids and after a character building, 8 hour, family road trip, we arrived at the Legoland hotel/resort. Since I might have been a little over dramatic about the magazine thing and because God has a sense of humor, this is what was waiting for me in the pirate ship display outside the hotel.

 That nearly life-size buccaneer fosters a sense of inclusivity and reassures visitors with all sorts of disabilities as to the accessibility of both park and hotel, but after 2 days of rolling around and transferring on and off rides, I decided that he is a multiple sclerosis icon. The wheelchair for his mobility issues is obvious, so I won’t dwell on it, but follow my head to toe review of the MS pirate and see if you agree with my assessment.

First, he has his trusty hat because a little shade goes a long way in the battle against heat. It also helps shield light sensitive eyes and when hands are too clumsy and uncooperative for any proper brushing and styling of your hair, hiding it under a hat is the next best thing.

Next, he’s opted for an eye patch to deal with double vision rather than the close one eye method. “Yarrrr, I’m not winkin’ at ye. I’m just makin’ sure ya ain’t twins”. 

Keeping one eye tightly closed can pull your mouth into the classic MS snarl….or sneer, but since he’s probably got his eye open under the patch, his snarl is either due to a facial muscle spasm, or some good old MS attitude.

He’s unshaven because some days MS and a razor just don’t mix. You can have a little scruff, or you can look like you lost a fight with a wildcat, your choice. That goes for whatever body part you shave. The MS pirate might have had stubbly legs, but I didn’t check because I respect his privacy.

Moving on, he’s wearing a gait belt over his clothes. We found this to be almost indispensable for transfers in the park and when we weren’t using it to help move me on and off rides, we secured it around my legs to keep them together when fatigue and baclofen caused me to do the MS spread.

Speaking of clothes, his are scrunched up because sitting and shifting in a wheelchair for several hours does that. We can’t see it, but I bet there’s a bare patch of lower back/butt showing where he’s either shifted down and hiked up his shirt, or scooted back and moved his pants down. 

One of his hands is curled by spacticity into a semi useful hook while the other, more capable one is wielding an item not intended for it, as a reacher, back scratcher, shoe horn, etc. The proper tool is elsewhere because it’s a wheelchair, not a Swiss army knife and while necessity may be the mother of invention, disability is its irresponsible uncle.

Finally, even though they’re not my thing, his knee high boots are practical slip ons so he doesn’t use a quarter of the day’s energy trying to put on real footwear. I’ll bet there’s knee high compression socks under them too. Those, unfortunately, are my thing.

Here’s my theme park ensemble. 

In hindsight, it is October so I could have gotten away with dressing like a pirate. I think he might have a better sense of MS fashion than I do anyway.