Happy Holidays 2011

(Photo credit: paparutzi)

This little blog brings me great joy.  I’ve been able to connect with so many wonderful people who I otherwise would never have come to know.  The notion that my writing has helped a few folks in any way is the icing on the cake.

So, thank you so much for stopping by and reading my posts and leaving your comments.  I wish you all a happy and (relatively) healthy holiday season and a joyful new year. 

Please check back in 2012 for more useless drivel, sarcastic nonsense, blatant self-pity, amateurish videos, and (I suppose) the occasional hidden nugget of wisdom.  I’ve got a few surprises in mind already. 

I tried to compose a new Christmas poem this year, but it was beyond awful.  I guess the verse I came up with last year was a one time flash of creativity, such as it was, so I’ll share it with you again.  Enjoy. 

Merry Disabled Christmas

Image via WikipediaThis year I endured disabled surgery

And read disabled books
I contributed to a disabled charity
And thwarted disabled crooks

I sailed on a disabled cruise
And piloted my disabled iBot
I sat for disabled interviews
And the good disabled fight, I fought

I starved myself on a disabled diet
And took a disabled shot at a deer
I appreciated nature, and disabled quiet
And quaffed many a disabled beer

I hand-peddled my disabled bike
And hand-drove my disabled van
I spent disabled time with people I like
And I was a loyal, disabled, sports fan

I spent too much money on disabled wheelchair parts
And I made many a disabled friend
I touched a few disabled hearts
And a thousand disabled emails, I did send

It’s not that life is unfair
As you know, I’m not one to complain
You play the cards that are dealt you
If you live in the jungle, you better enjoy the rain

So during this holiday season
I urge you to seek out contentment
Don’t spend time searching for a reason
To feel self-pity, jealousy, or resentment

I’ll end my cryptic verse right here
And offer this sentiment to those most dear
I wish you a Merry Disabled Christmas
And a Happy Disabled New Year!

My Arms are Growing Shorter

Of course my arms are not really growing shorter, but they might as well be.

My MS progression has not been random, but has instead followed clear patterns. For example, the flexion muscles in my legs (those that allow me to bend my legs at the knee) grew weak before the extension muscles (those that allow me to straighten my legs). My neurologist told me that this is typical of muscle control loss due to central nervous system failure. How interesting.

In my upper limbs, I’m losing strength in the fine motor area (muscles that allow me to write, type, and snap my fingers to big band music) before I lose strength in the larger muscles. Again, apparently this is typical. How nice.

But this blog post is about the muscles around my shoulders. I'm losing control of them in such a way that I can no longer reach things up high, but I can still reach things down low. This is the functional equivalent of my arms growing shorter.

I'm having difficulty shampooing and brushing my hair. Yesterday, I reached for the mouthwash, but I couldn't raise my arm high enough to grasp the bottle, which was at chin level. I can’t high-five anymore. A gentle fist bump is all that I can manage as a shared, celebratory gesture for a Patriots win, a beautiful sunset with cold beer and close friends, or a cost of living increase in my Social Security check. Ya, that’s right. I got 3.6% this year.

When I first settled into a wheelchair, the height of my reachable world shrunk from around 7 feet to maybe 5 feet. Now it is down to about 4 feet. I’m like the mime in the invisible, shrinking box.

But I'm all about silver linings. For example, if it was my decision to make, I would definitely choose to relinquish the use of my hands at a higher level before I would at a lower level. Strength and dexterity for tasks above my shoulders is so much less important to me than below my shoulders.

In this regard, I feel fortunate.

On an unrelated note, isn’t it weird how we can accurately identify sarcasm in the spoken word, but struggle doing so with the written word?

Adventures in Public Transportation #1

Not so long ago, even during my first year as a wheelchair user, I was a proficient traveler. I could get from one part of the country to any other part of the country, quickly, comfortably, and economically. An ice storm has shut down O’Hare? No problem. I'll reroute through Atlanta. In fact, I accumulated so many frequent flyer miles that I was routinely upgraded to first class. “Complimentary beverage, Mr. Sturgeon?”

For some first-hand accounts of my solo wheelchair travel adventures, click here and here.

Contrast this with my current level of mobility and independence, where I can't so much as leave the neighborhood without asking someone for a favor. I am by no means homebound, yet I'd like to be able to move about of my own volition.

Enter…public transportation.

One option in greater Portland, Maine is the Regional Transportation Program, or RTP, which is a subsidized agency that provides low cost rides to folks with various types of disabilities. A couple of weeks ago I had a dentist appointment and made use of this service for the first time.

My appointment was for 11:00, and I let RTP know I would need a return ride at about noon. The driver showed up at my house promptly at 10:00. She was pleasant enough, but certainly not talkative. My wheelchair was carefully strapped down to the floor of the van, and I was secured to my wheelchair with a seatbelt. She dropped me off at my dentist at about 10:35. No problem though. I had my Kindle with me.

As expected, I was out of the appointment at about noon. I sat in the waiting room, with a watchful eye on the parking lot. Nobody showed up. I didn't know how long I should wait before checking in with the dispatcher, so I called him at 12:15 just to make sure that I had not been forgotten. He indicated that someone was on their way.

12:30 came and went. I waited graciously, but with some anxiety.

At 12:45, an RTP vehicle finally pulled into the parking lot. This driver was not pleasant, not apologetic, and not talkative- all business. As we began the drive toward my house there was no friendly chit chat. There was only silence. Perhaps when I become a more seasoned RTP rider, I'll enjoy and appreciate these moments of solitude. But I wanted to engage this guy in conversation, if for no other reason than to answer some of my basic questions about how this whole system worked. I am an engineer after all. I need to know how things work.

Then, out of nowhere, a car hurled itself in front of us from a side street. I was well strapped in, so even though my driver stepped on the brakes firmly, I didn't get tossed around at all. We sat there while the elderly lady in front of us tried to remember how to drive. Eventually she pulled away, nearly clipping another vehicle in the process.

I saw an opportunity, and I went for it. "I guess that lady shouldn’t be driving," I observed out loud.

That opened the conversational floodgates. For the remainder of the ride home the driver regaled me with all sorts of stories of idiot drivers and all the close calls he had endured. Since he was on a roll, he complained about two or three other injustices in his life too. I was able to squeeze in a couple of basic questions about how the RTP and public bus systems worked, and my driver gave me thorough, if overly cynical, responses.

Last week I made my second excursion with RTP. I had a 10:00 doctor’s appointment. My understanding was that they typically pick you up about an hour before an appointment, so I was gearing up for a 9:00 ish arrival of my driver. At 8:30 my phone rang and it was my "5 minute notice” that my driver would soon be arriving. I was surprised and taken aback. Not knowing what else to say I only countered with a feeble, "This is for a 10:00 appointment, right?"

The dispatcher shuffled some papers, and replied, "Yes," and that was the end of my halfhearted protest.

Sure enough, the driver arrived at about 8:35. He strapped my chair to the floor and me to my chair, and then headed out. He informed me that I was going to ride along with him while he did one other pickup and drop off. Okay. That explained the early arrival.

We traveled all the way across town and picked up a little boy from his mom and delivered him to some sort of daycare. I ended up arriving at my appointment 15 minutes early, which is just about what I like to do anyway. My appointment was a quick one, and I was out by 10:15. The driver was scheduled to pick me up at 10:30, and showed up at 10:25. I was home by 10:40.

So far, I must admit that I am less than enamored with my public transportation experience. But really, what should I have expected? The drivers of these handicapped accessible vehicles are not volunteers teeming with boundless compassion for the passengers. They are more like taxi drivers or bus drivers. This is how they make a living. The only difference is that they are servicing disabled passengers rather than the general public.

I guess I had this fantasy in my head that an agency which deals specifically with disabled people would be staffed by drivers who were more like, well, grandmothers. They would be friendly, empathetic, talkative, and always on time. They would bring cookies and milk, and gently remind me to sit up straight and wash behind my ears.

So the RTP is not shaping up quite like I had imagined, but I'm not complaining. I'm just saying.

Home Improvements – Installment #2

As I mentioned in Home Improvements – Installment #1 and in my posts about moving, here and here, not long ago we relocated from the picturesque but boring suburbs into the urban and walkable (and therefore wheelchair-able) city. The house we found was one story and fairly accessible, with wide doorways and an open layout. This is the second blog installment describing how we've converted this potentially accessible house into one that is well-suited for my current disability, and hopefully for my future levels of disability as well.

Previously I wrote about access improvements to the house for the front door and the back door. Inside the house, though, the least accessible area was the master bathroom. It had a traditional tub surround that required an elaborate (and almost dangerous) procedure for me to get into and out of it.  The bathroom also had a conventional vanity that was impossible for me to get close to with my wheelchair.

We considered several alternatives for the tub. The obvious option, and the one that we employed in our previous house, was to hire a carpenter to build a custom tile shower to replace the tub enclosure. Another option was to use a company called Bath Fitter.  We chose Bath Fitter for a couple of reasons. First, the one-piece acrylic shower enclosure is lower maintenance than a tile enclosure. It is easier to clean, and it will never leak. Second, the Bath Fitter shower, as you may know from their commercials, can be installed in one day (more or less).

The Bath Fitter product was not inexpensive though. We paid about $5400 for the unit, installed. A similar tiled shower quote was approximately $1000 less, but it would have taken 7 to 10 days to install. I'm not sure what I would have done during that period.  Although Kim could have used our small guest bathroom, that shower is not accessible to me. Kim informed me, in no uncertain terms, that my going without a shower for a week or more was not an option!

How did people live with one another before modern plumbing?

When I consulted with the Bath Fitter salesperson in our home, prior to signing a contract, we came up with a configuration of plumbing hardware that would work for both Kim and me. As you can see from the photos below, we now have two shower heads, a stationary one that Kim will primarily use, and a hand-held unit for me. There is an easy to operate switch which diverts the water from one head to the other. We also decided on a couple of shelves, one for my soap and shampoo, and a corner shelf for all of Kim's girly stuff. And of course I needed a couple of grab bars to help with transfers.

We couldn't be more pleased with our new shower enclosure. It actually took two days to install instead of one, but that's no big deal. I wasn't happy with how the shower floor drained (it turns out that my concrete slab is a little crooked), so Bath Fitter came back later and re-leveled the shower floor at no extra charge.

All the controls work well for me. Transferring is going okay, although as my MS continues to progress we’ll need to come up with other adaptations to assist with transferring.

Tub Before

















Shower In Process












































Shower After













































Next- the vanity. We hired a carpenter to gut most of the cabinet and to install some open shelves, with a large space in the middle for my wheelchair. Kim installed an easy-operating faucet for me, and lowered the mirror. Again, this project was a clear winner, and we couldn't be happier with it.

Vanity Before
















Vanity In Progress



















Vanity After

































The last project I'll mention is not accessibility related at all, but I can't help sharing it with you nonetheless. Here are some before and after pictures of our master bedroom. Kim replaced the ceiling fan herself. We purchased a new carpet and had that laid professionally. Kim chose some new artwork, curtains, and bedding, and of course she painted the walls in the bedroom (and bathroom).

Bedroom Before (previous owners)



















Bedroom After

















So now we’re out of money.  But luckily we don't have much left to do. Kim plans to lay a brick patio outside our back porch in the spring. I'll report on that in Installment #3, if Kim and I both survive another harsh Maine winter; if Congress doesn't eliminate both Social Security and Medicare in order to balance the budget; and if we don't win the lottery, hire a butler named Jeeves and a nurse named Destiny, and simply move to Hawaii instead.