Category Archives: Wheelchair

A First Aid Kit for an UNlimited Life

Working at a Center for Independent Living definitely had its perks. The bathroom mirrors were low enough that I could actually see in them while in my chair and there were plenty of handicap spots in which to park. I was also one of many people that used a wheelchair instead of the only one. Being one of many had its own set of perks, most notably, I could go to my boss or a co-worker when I needed a minor adjustment made to my chair.

At my new job, none of these things are available. I have to advocate for myself in order to get the accommodations I need. I have also had to learn how to cope with things I didn’t think much of before; such as those higher mirrors or minor adjustments I might need for my chair. So, of course, today the screw came out of the brake on my wheelchair. It has been loose for weeks, but I kept forgetting to fix it. As luck would have it, I was transferring out of my chair to use the bathroom today and it came off in my hand.

When I got back to my office and showed it to my new boss, he asked if I was going to need to leave in order to get it fixed. Although this was a nice option, the idea filled me with dread. In order to get my chair repaired at Wheelchair Seating I would have to call for an appointment, then a taxi, (making sure to request the taxi an hour before your appointment was scheduled to be sure I made on time) get to the appointment, wait to be seen, wait some more while they fix it, call another taxi to retrieve me and then wait for them to show up. Suddenly, that 5 minute fix would become a two hour (or more) adventure in Boredom-land. There was no way I was going to let one little screw, screw up my day.

Luckily for me I have this handy Allen Wrench set that I keep in my back pack, along with my other emergency essentials. Most wheelchair parts are held on by screws that take various sizes of Allen Wrenches; so this handy little set allows me to fix majority of the loose screws and make minor adjustments on my own. I have had it since my college years, when my wheelchair repair guy was more than two hours away, and it has saved the day on more than one occasion. Today, I put my handy little kit to the test for the first time on my own, (I always had someone around to help me before) and I am happy to report that my brake has been re-attached and is once again fully functional.

Though I would never attempt a major repair on my chair on my own, for fear of making it worse, going to Wheelchair Seating for a loose screw is like going to the doctor for a Band-aid. This little kit allows me to address those minor tune-ups on my own, as opposed to always going to a professional. It’s like a first aid kit for my wheelchair.

A Wheelchair Fit for a Bride

Just a few weeks ago I celebrated my 2nd wedding anniversary. Actually, it wasn’t much of a celebration; it was the middle of the week, my husband and I were both feeling too tired to go out after work, and when the weekend rolled around, the pump on our well decided it didn’t want to work anymore. That’s married life for you folks; all bliss and romance all the time.

Anyway, my anniversary, lackluster as it was, got me thinking back to my wedding day and the whole planning process. As some of you may know, I kept a blog during that time in order to record my experiences. I did this for two reasons; the first was that when I searched online for information about being a bride with a disability, I found very little, which annoyed me. I wanted to make sure that brides after me had some decent resources. The second reason was that I wanted other women with disabilities to know that despite the messages society has fed us, we can get married and we do get married.

Of course, when I was planning my wedding, I spent most of the time worrying about how my disability might affect it. Would I be able to walk down the aisle? How would I carry my bouquet? Would my dress get caught in my wheelchair? How would I pose for pictures?

One of my biggest concerns was looking like a bride on my wedding day. I am normally not a vain person, but on that day, I wanted to be beautiful; not a beautiful girl in a wheelchair, but a beautiful bride. I found the dress and the shoes pretty easily, I made appointments for my hair, nails and makeup, and then I was faced with one more thing: My Wheelchair. Let me be clear, I am not ashamed of my wheelchair, but when you live an unlimited life, wheelchairs get pretty banged up. The paint chips, you scratch it, one wheel gets a squeak and sometimes pieces are missing. It was ugly and not exactly bridal, so I worried that it might take away from my photos and be a eyesore coming down the aisle.

The solution? Some strategically placed fabric, some contact paper and a beautiful bouquet. My mother is a seamstress, so she created slip covers for my wheelchair to cover the back and the seat. She then covered my wheel guards with ivory contact paper and my sister helped to strategically drape some additional fabric over the back to create a train. When I met with the florist, we figured out a way to attach the bouquet to my chair. The results were absolutely gorgeous.

Aside from the enormous bouquet, (which could be created with fake flowers to save money) this was a pretty cheap makeover. It only took about five yards of fabric, much of which I was able to reuse for another project.

I know that ultimately my wheelchair did not matter that day. What mattered was that I was marrying the man that I loved, surrounded by my friends and family. But for me, it felt great to make my wheelchair a special part of my day. It was that last little detail that brought everything together. Plus it looked awesome in the photos.

Aging gracefully despite the “easy wheelchair life”

My friend Carrie, also a wheelchair-user, but not from a spinal cord injury (she has cerebral palsy: moderately so and can push herself in a manual chair), is a my only friend in a wheelchair who lives in my area. We met one another at David Bowie’s “Reality” tour in 2005, and she’s a woman with some mighty keen insight. 10 years older than me, she looks about 28 years old.

See, Carrie has this amusing theory that people who use wheelchairs from childhood on up, end up looking younger than their real age most of their lives. We live a “soft life” she theorizes, because well, for many of us we have no other choice. Spending hours in the sun working for example, not many of us could do that even if we wanted. So we end up with the skin of an angel, and love it or hate it – getting carded into our 40’s.

BUT…but….some of us ladies in chairs still worry about aging. Even I know, despite my wheelchair life, that aging is inevitable. So…since I like to be prepared, staving off aging has been a concern of mine since my early twenties. I started my “Be Smart with Your Skin Care” regimen at age 22, with Oil of Olay + sunscreen St. Ives Apricot Scrub being my big two.

I first began using Oil of Olay after using Lubriderm lotion on my face for several year. This is body lotion; an amateur mistake on my part. When I began to notice my pores were bigger than they should be and my skin was looking ashy, I knew I was over-moisturizing and needed to find a lotion made for the face. It felt old making this transition, but it was time, and Oil of Olay was the face lotion I reached for.

My grandma, mom and now myself have all used their products, and I’ve been an avid user of Oil of Olay’s Complete lotion w/ SPF 15 for daily use now for over a decade, and it has served me well. It’s definitely done it’s work these past ten years. And, it’s working. I get SO many comments from people who think I’m younger. It’s really all about moisturizing, staying out of the sun and water, water, water (for consumption that is).

Then I discovered the best face scrub/exfoliator on the market, St. Ives Apricot Face Scrub. As a quad, exfoliating our skin is a must to keep it in tip-top shape, and this stuff is very reasonably priced. It removes all of the old skin cells from your face beautifully, revealing glowy skin you didn’t even know you even had.

What I love about St. Ives too, other than the fact that it’s cheap and it works amazingly well, is that it can be used anywhere on the body. As a quadriplegic prone to skin issues, exfoliating the skin can help immensely long term.

Rub it all over your body in the shower (in circles), clockwise and counterclockwise, and do this a couple of times a week. My skin stays in great shape and a nice bonus, I feel so much prettier whenever I do this. Amazing stuff.

My ultimate goal at some point however is to not care about aging and to embrace the now, but that’s not easy…even from where I sit. I just hope I continue to get carded for at least a few more years. After that, go ahead and bring on the “maams.” I’m ready.

Image courtesy of Tanel Teemusk

Real-life new wheelchair shopping lessons

Every wheelchair-user fears the same thing: Transitioning to a new wheelchair. I’ve had four new power wheelchairs over my 20 years of being paralyzed, and each transition has been progressively more difficult (oh how I wish it was as fun as shopping for a new sports car). Yup, getting a new wheelchair it’s about as fun as going to dentist.

However, if you’re like me, you’ve been using a wheelchair for awhile and know what works for you. So good news! You’re in for a less rough of a time than most.  But be warned, ordering a new wheelchair is so not like buying new clothes. You just can’t return it if it doesn’t fit, or decide you don’t like it. It’s a massively expensive purchase and there’s a lot of risk involved. What’s a wheelchair-user to do?

One of the best solutions to this quandary – finding a brand you like and sticking with it. My first wheelchair was a rental – an E&J clunker from the 1980’s (oh man that was an awful wheelchair).  Needless to say, for my first chair I decided to go shy away from that brand and went with an Invacare powerchair instead. A teal non-whiny powerchair. A cutie patootie.

Here’s the thing – a wheelchair just isn’t a mode of transportation, it reflects who you are (even if you don’t like it).  This makes getting the right wheelchair key. Trust me, the right chair can definitely have an impact on your outlook on life: Get the wrong chair, you’re as crabby as Mr. Potter from It’s a Wonderful Life. Get the right chair, and conquer the world like Sen. Langvin (a quadriplegic representative from Rhode Island. He has an iBot).

This is why shopping smartly is massively important when shopping for a wheelchair, but this is not always easy when there’s monetary restrictions. Some of the most amazing chairs that could completely transform people’s lives – 4x wheel drive wheelchairs, wheelchairs that stand up on their back two wheels, wheelchairs that climb stairs – can’t happen for a lot of people. This is why shopping for your main basic chair, which is probably not your first choice, but you’ll take it anyways, is a pretty big decision.

What should you look for? I ended up liking the Action powerchair line from Invacare because it looked as modern as a powerchair could. It wasn’t really loud and it came in some pretty cool colors (that’s my 14 year old mentality there), and I’ve consistently gotten my chair from them over the years though, only a newer model. They just feel good. I’ve looked at other brands – Quickie, Permobile, but they were either too loud/not as streamlined, too big and wouldn’t fit in my van, or they were were too darn expensive and not covered by my insurance. I had to settle, but it was a happy settling at least.

The newest model I got from Invacare is their TDX SP, with elevator seat (and in ‘wet black’ so it matches all of my clothes). It also came with tilt, but (funny story) I had to remove it so I wasn’t sitting so high from the ground.  After getting it, I found I couldn’t reach things when I dropped them. It was a bummer, but it had to be done (and my tilt now sits in my closet in a big cardboard box).

But boy do oh I love my elevator seat. It raises my seat 2 1/2 feet taller than it usually is, giving me a much better view at concerts or when talking to people. The first time I got it was my most previous wheelchair (in 2005) and holy cow was that a happy year. I was getting stuff out of the cupboards left and right like it was going out of style (just because I could). I’ll never go back.

Remember, at the end of the day the final decision on the chair you’re going to get should be yours. Rehab specialists and PT’s may think they know what will work best for you, but always go with your gut. I’ve learned that’s one of the best ways to guarantee you end up with a wheelchair you love.

What wheelchair have you found works best for you? Are you a brand person and stick with the same company, or have you tried different chairs from different companies over the years? 

Links

– Invacare’s TDX SP powerchair

– iBot standing wheelchair

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