Tuesday, November 27, 2012

Standing As Therapy

imagesThe human body is not designed for prolonged sitting. Office workers and truck drivers know what I mean. But at least they are able to stand up and move around before and after work and during breaks. Not so much with us wheelchair users.

Besides looking up at the world all day, which is bad enough, it turns out that sitting wreaks havoc on our bodies. This is in addition to the havoc being wreaked on us by whatever prevents our standing in the first place. Cruel irony. The list includes problems with joints, spinal alignment, respiration, digestion, spasticity, skin sores, and much more.

I recently met a new MS friend, Darcy, who lives just down the street. She is a wonderful lady whose disease course is quite similar to mine. I stopped over to visit with her a couple of weeks ago. As is typical with disabled people that I meet, we compared notes to see what we could learn from one another. Darcy and her husband have acquired some cool adaptive equipment. One item is an EasyStand 5000, pictured to the right. This is a type of device called a standing frame, which allows disabled individuals to elevate themselves to an upright position for some period of time. I like to refer to this as therapeutic standing.

Here’s a link that describes some of the health benefits of assisted, therapeutic standing.

These units cost upwards of $2500 new – a serious amount of cash. But Darcy’s husband obtained most of her disability equipment from Craigslist.com. Inspired by him, I logged on and found a slightly used EasyStand 5000, about two hours away, for only $600. Kim and I drove to New Hampshire and picked it up. In doing so, we met a very nice disabled man and his wife. Of course, I compared notes with the gentleman in the wheelchair, but Kim compared at least as many notes with his wife – notes about how to take care of occasionally stubborn, but strikingly handsome men in wheelchairs.

Below is a demonstration of how the standing frame works. There is a lever arm that I operate with my right hand in order to raise the seat up. At first, I didn’t think I would have enough strength. However, I learned that if I make very small movements with the lever arm I can ever so slowly raise myself up. Kim could do it twice as quickly for me, but I like accomplishing this myself.

a_5000

There is a tray where I can place items to keep me entertained while I am in the standing frame. This is critical. As is the case with any piece of exercise equipment (which is essentially what this device is for me), the most likely outcome is that I’ll use it faithfully for a few weeks or months, then use it sporadically for a few more weeks or months, then I’ll put it on craigslist and brag to everyone if I’m able to get a better price than I paid for it. I don’t want that to happen.

Here’s a picture of me in full relaxation mode in my EasyStand 5000. I have everything I need: remote controls for all of my A/V devices, my iPad mini, and a glass of Pinot Noir. I’m up to 25 minutes and one glass of wine per standing session now. My goal is to stand up long enough to get drunk enough that I can’t stand up anymore.

I sense there is a flaw in my plan, but I can’t quite put my finger on it.


Tuesday, November 20, 2012

Forty million people need a wheelchair but don't have one

And for people in developing countries, if they do have one then there is a good chance that it does not meet their needs. Amos Winter, from MIT, is trying to do something about that.



Thursday, November 15, 2012

Memories: Vernice Sturgeon

1951 wedding 02A couple of weeks ago we marked the fourth anniversary of my mother’s passing. She led a wonderful life as a disabled person. Allow me to share some memories with you.

One September morning in 1969, when I was only five years old, I bounded out of my bedroom expecting to find Mom preparing breakfast. Instead, Dad was sitting at the kitchen table, looking quite haggard. But he was a shift worker, so although his appearance that morning was not reassuring, it wasn’t particularly unsettling either.

"Where's mom?"

"She’s in the hospital. Broke her neck."

“How?”

“Fell down some stairs.”

That's all I remember of that day.

We lived in a small town without a proper hospital of its own. So whenever we visited Mom for the next year we had to drive an hour to the Big Hospital in Bangor or five hours to the Really Big Hospital in Boston. Toward the end of her time away she lived in a convalescent home in Bangor, where she was drilled in the essential skills of surviving as a quadriplegic in the year 1970.

My memories of these events are few, but I vividly recall two aspects of my initial visit with Mom after her accident. First, she had some sort of a steel rod protruding from the top of her partially shaved head. I’m sure this was a traction device used to stabilize her fractured cervical spine. That was disturbing. Second, my mom had a genuine smile on her face when she saw me, just like she always had, and she spoke to me with that same comforting, maternal voice that she always did, as if nothing scary was happening at all.

Although that visit must have been traumatic for me as a five-year-old boy, kids are emotionally resilient. I cannot imagine how difficult this conversation must have been for a 35-year-old mother of three who had gone from a vibrant young woman to a permanently crippled quadriplegic, literally overnight. From where did she summon the strength to offer her youngest son, in a convincing manner, the very same expressions and tone of voice that I had missed only a few mornings earlier at breakfast? And it worked! I didn’t care much for the hardware apparently screwed into her head, but it was clear to me that this was indeed my mom, pretty much unchanged in the ways that mattered most to me.

To a child, having a mother in a wheelchair was a bit of a novelty. She was never ashamed or self-conscious in public, and so neither were we. But there were these extra tasks associated with her movements. Each day of her life was sandwiched around the early event of “getting her up”, and the late event of “putting her to bed”. On those days when she ventured from the house there were a myriad of additional movement tasks required to get her to where she was going and then back home again. Since we were so accustomed to completing these tasks, they became chores, something like washing the dishes or sweeping the floor. We completed these chores without giving them much thought. Other than her unique needs, she was a mom like any other mom. She took care of us, guided us, reveled in our successes, and shared in our sorrows.

To her credit, my mother never complained about her lot in life. She espoused no particular theory of good living that she adopted after reading a book or listening to a talk. She never gave us lectures about how well she was overcoming her obstacles. She didn’t subject us to sermons about the advantages and disadvantages of living life one way versus living life another way. She didn’t even acknowledge that her positive attitude in the face of great challenges was anything above and beyond the normal. She simply led by example.

2007 638Oddly enough, freakishly enough really, my major MS lesion load is at the same cervical spine location as my mother’s injury was. Therefore, my disability is steadily becoming more similar to hers as I continue to progress. I’m sure it saddened her to see this happening to me near the end of her life. But if I am able to match her courage and strength of character going forward then I will be honoring her memory in a very special way.

If asked to summarize what I learned from my mother in a single thought, it would be this. No matter what happens, just dust yourself off, adjust to the new realities of your life, and carry on. Whenever possible, do this with a smile.

Wednesday, November 7, 2012

Drinking the Kool-Aid

Drinking the Kool-Aid
(Photo credit: rob.knight)
Drinking the Kool-Aid has become a metaphor of blind faith, or being committed to an idea without justification. The term references the November 1978 mass suicide, when 912 followers of the Reverend Jim Jones drank a Kool-Aid type beverage laced with cyanide.

Brand loyalty is one common manifestation of Drinking the Kool-Aid. This occurs when people mindlessly commit themselves to buying products only from their favorite companies, year after year, whether or not these products represent the best available options in the marketplace.

Question- what is perhaps the most well-known brand in existence today?

Apple.

I’ve never owned an Apple product before. This is partly because each time I’ve evaluated them against the alternatives I’ve never been able to justify the added costs. But this is also partially because I’ve always been turned off by the culture of unadulterated love and devotion for this company that Apple users embrace. I’ve always preferred to purchase computer and cell phone products where the software is not inextricably tied up with the hardware. For example, I might buy a Dell or Hewlett-Packard laptop computer, with an operating system made by Microsoft, and use Skype for videoconferencing and Google for emailing. I prefer to select my ingredients from a broad menu rather than having a plate brought to me already prepared, no matter how inviting the cuisine.

At least that was the case until Friday.

It all began on October 23rd when Apple announced their new iPad Mini. There were two problems though. First, the so-called experts had predicted that the price would be about $250, but it turned out to be $330. Ouch. As a comparison, about six weeks earlier I had paid $199 for a Kindle Fire HD, a competitive product. Second, I didn’t like the idea of ending my lifetime boycott of Apple. But it was time to be a big boy. If the Apple product was the best option for the money, then I couldn’t allow brand disdain (the opposite of brand loyalty) to cloud my decision-making.

The iPad Mini was due to be released on Friday, November 2. 2012 11 100Kim dropped me off on her way to school that morning. I was in the mall by 6:45. There were 13 people in line at the Apple Store in front of me. Not bad. This being my first Apple launch experience, I hadn’t known whether to expect 3 people or 100 people. There were also 5 or 6 blue-shirted Apple employees outside the store, and a horde of employees inside the store.

For the next 70 minutes I chit-chatted a little with other customers and the Apple employees. But mostly, I tried to play it cool and keep to myself. I didn’t want these Apple lovers to think I was one of them. I was just buying from Apple because I thought it was the product best suited for me, not because I was drinking any Kool-Aid.

I was in balance mode in my iBot the entire time, so I was happy to draw some of the “Oh my God, isn’t technology amazing” attention my way. I had one of the employees take my picture for this blog post. He told me he would also take a shot of me with my new iPad when I came out of the store.

At about five minutes of eight, the Apple employees went into full launch mode, which means they insisted on making this a festive occasion, much to my dismay. They got the crowd of customers, which was about 25 people by this time, whipped into a frenzy as if we were about to have gifts of riches bestowed upon us.

At precisely 8:00 the doors opened, and all the employees ran laps around us, giving and receiving high-fives. I allowed myself to leak a polite smile, but that was all. Then they started matching up customers with employees, and by 8:07 I was in the store with Chris. A couple of minutes later I had my iPad Mini. One aspect of the purchase experience that I absolutely loved was this question from Chris: “Would you like the receipt emailed to you, printed out for you, or both?” I took the first option.

I spent a few minutes with one of the technicians having him set up the unit for me. During that time, employees kept walking by and congratulating me, again, as if I had won some prize or accomplished a remarkable feat.

When I emerged from the store the employees who were stationed outside gave me a big ovation, and the gentleman who took my picture earlier insisted that he take another one, this time with the iPad Mini in my hands. It was all too cult-like for me. I had to get out! I brusquely told them “no thanks” and zipped down the hallway to catch my bus home.

images1What became of my Amazon Kindle Fire HD that I purchased six weeks earlier? I returned it for a refund. That hurt a little, as I’ve been a rather enthusiastic, and even loyal, Kindle user for years now. But I’ll still keep my original Kindle, because it works better in direct sunlight then any of the higher end e-readers. And I’ll keep purchasing my books through Amazon using the Kindle reader app on my iPad.

So how is the iPad Mini working out for me? I absolutely love it. It has an extensive array of accessibility features for different types of disabilities. And bottom line – it is an e-reader, but also a powerful and well-connected computer that fits in the pouch of my wheelchair. Well done Apple. Now please don’t roll out the iPad Mini II for at least a year.

My cell phone contract is up in March of 2013. Time for an iPhone?

Pass the Kool-Aid, please.
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