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.

Save the iBot Update

As you may already know, the iBot, this life-changing mobility device, is no longer being manufactured. Why? It’s because of a complex set of circumstances generally having to do with too much government red tape and a pervasive attitude that disabled people do not deserve to live highly engaged lives – getting us from bedroom to bathroom to kitchen should be enough.

But we are not taking this sitting down. There are several efforts underway to save the iBot.

I help out with a nonprofit called America’s Huey 091 Foundation, which has so far purchased 23 iBots and provided them to disabled veterans. The Foundation feels so strongly about the life-changing effect that the iBot has on disabled veterans and civilians alike, that they have made it their mission to revive the iBot Program. They are working with the inventor, Dean Kamen, and a variety of other influential advocates, in an all-out blitz to get this done.

The Hallmark Channel has produced a new movie, called Cancel Christmas, which features a young, disabled boy who is given an iBot for Christmas. In fact, the Foundation helped the Hallmark Channel gain access to the iBot used in the movie. Of course, the cruel irony here is that nobody in the real world will find an iBot under their Christmas tree this year.  Nevertheless, this is a touching story, and America’s Huey 091 Foundation is working with the Hallmark Channel to capitalize on the buzz that the movie will create for the iBot.

Click here to view the outstanding, six minute documentary that America’s Huey 091 Foundation has produced. Although Cancel Christmas is a made-for-TV movie, the Foundation, with permission from Hallmark, is presenting Cancel Christmas in a number of theaters. The above referenced documentary will be shown in those theaters as well. Check the Foundation's homepage for local theater viewing times.

Click here for more information about Cancel Christmas, including viewing times on the Hallmark Channel.

To visit the iBot page at America’s Huey 091 Foundation click on the word “iBot” in the top menu of their homepage, or click here.

If you are so inclined, please donate generously to the Foundation, not only to help disabled veterans, but to help save the iBot for veterans and civilians alike.

Another organization, which is working hand-in-hand with America's Huey 091 Foundation, is SavetheiBot.org. My friend Max Burt is a tireless advocate, and an iBot user himself. Please visit this website or the associated Facebook group to learn more about our efforts to save the iBot, and to sign our petition.

Click here to visit my YouTube channel too enjoy some videos of me and my iBot in action.

And finally, click here to peruse my previous blog posts about the iBot.

Game-changing technological advances which significantly improve the lives of disabled people should not simply fade away because of correctable bureaucratic flaws. For those of us benefiting from this wonderful device, allowing the iBot to become extinct would be like over-regulating and under-supporting insulin pumps or prosthetic hips until they were simply no longer available. Would we let that happen? I don’t think so.

Bonus Time

My friend Keith ruptured his aorta a few years ago. The bleeding was slow enough and the medical attention he received was timely enough that he survived, despite the odds. If not for outstanding doctors, strength of will (his and his wife’s), and good fortune, we would've said goodbye to Keith years ago.

My mother-in-law was diagnosed with breast cancer about five years ago. It was a large tumor and she was given a 50-50 chance of survival. It could've gone either way. But due to her indomitable spirit, the support of her loving husband, and modern medical technology, Carole is still with us.

Congresswoman Gabrielle Giffords was shot in her head (in her freaking head!), point blank, by a deranged assassin. Yet she not only survived, but is growing stronger each day.

Keith, Carole, and Gabby are all living on bonus time.

It is heartwarming to learn about people who have cheated death. The heroes of these stories have each acquired a renewed appreciation for life, having come so close to losing it. In some sense don't we envy these folks? Don't we almost wish for our own near-death experience, so that we could stop taking life for granted, so that we would have legitimate grounds to cherish each and every day?

I'm here to say that we can all breathe this rare air without battling cardiac failure, overcoming cancer, or surviving a shot to the head. If you think about it, each of us is already operating on bonus time. Here’s what I mean.

First, every single one of our direct ancestors had to successfully survive their own birth, avoid childhood diseases and maladies, live to childbearing age, mate and produce an offspring before dying of disease, starvation, war, or attack by sabertooth tiger. And except for the last 50 or 100 years, all of our ancestors did this without the benefit of sterile operating rooms, Facebook, or Prozac. Consider the odds that each of our family lines has overcome, generation after generation, to win this tournament of life. Although we may not have cheated death as palpably as Keith, Carole, or Gabby, we have cheated nonexistence by a considerable margin.

Second, think about all of the people that could have been born instead of you, but never were. What if your parents had not met one another, but had fallen in love with (or at least had sex with) somebody else instead? The person that is you, with your unique genome, would never have been born. What if your mother, or her mother, or her mother, had come down with a headache (real or imagined) and hadn't been in the mood to procreate at the very second that she did. Because so much of who we are is the result of the random merging of genes from each parent at the split second of conception, if this moment had been delayed at all then some other child with different hair, a different personality, and maybe even a different gender would've been born instead of you. In the sense that you exist and all these other potential people don’t, you have been profoundly fortunate. Congratulations.

Third, think about all the close calls that you've survived, the first of which was your own traumatic and risky childbirth. Then think about how many times you’ve stumbled but caught yourself; how many times you almost crossed the street but at the last minute noticed a speeding car out of the corner of your eye; or on how many occasions you overcame any number of teenage and early adulthood risky decisions involving alcohol, drugs, and other dangerous behaviors. Frankly, thinking back, I'm amazed that I've eluded death for as long as I have.

By simply being alive enough to read this blog post you've overcome greater challenges than heart disease, cancer, or gunshot wounds to the head. You shouldn't be here. No one of us, by any statistical analysis, should be here at all. But we are. There is no need to wait for your own story of extraordinary survival. It’s already been written. 

Give yourself permission to embrace that same zest for life that Keith, Carole, and Gabby already have. Stop sweating the small stuff. Stop giving a damn what everybody thinks about you. Most importantly, stop putting off your dreams for another day. Start living them today, because the splendid adventure that is your life is a gift that so many other potential people never got the chance to experience. If nothing else, don't we owe it to them to make the most of our good fortune, to live life to the fullest?

And the size of the dream is not important- climbing all the great peaks in North America or trying to be a more considerate spouse. It doesn't matter. The same principle applies.

When you wake up each day, take stock of how incredibly fortunate you are to be here at all, remind yourself that you're already operating on bonus time, and then act accordingly.

Incidentally, reasons one, two, and three, above (the reasons why each of us are already operating on bonus time), are also appropriate responses to grumblings like “life is unfair,” and “nothing good ever happens to me,” and “what do I have to be thankful for?”

For a humorous and touching story of survival and renewed appreciation for life, watch this video clip.
 

I Surrender

(Photo credit: Wikipedia)

“I may not have gone where I intended to go, but I think I have ended up where I needed to be.” - Douglas Adams

I've reached (achieved?) several major milestones in my disease progression, such as:

• diagnosis
• informing my loved ones
• starting and stopping various treatments
• using a mobility aid (cane) in public for the first time
• installing hand controls for driving
• buying my first wheelchair (iBot)
• leaving the workforce
• qualifying for disability benefits

and now…

• surrendering my driver’s license

If you are a regular reader of this blog, you know that I saw this coming from a mile away. I’ve predicted several times that my left hand weakness would soon prevent me from operating my hand controls. But in the end, it wasn't only my left hand. It was the convergence of three separate impairments that did me in.

First, as expected, my withering left hand was having difficulty operating the brake and gas lever of my hand controls. I was increasingly compensating for my weakness in a couple of ways. I would habitually overuse the cruise control function, so as to rest my left arm more often. Also, I would routinely place the vehicle in park when I was waiting at a red light, again, to rest my left arm. I had learned to ignore the protesting horn toots I heard if I was too slow getting off the starting line on green lights.

Second, I needed to be able to transfer from my wheelchair to the driver’s seat. I am aware that some disabled drivers operate their vehicles directly from their wheelchairs, but I didn't want to do that. In February of this year it was becoming nearly impossible for me to transfer from my wheelchair to the standard driver’s seat, so I invested part of my tax refund in a power adjustable driver's seat, which made the transfer easier. In the last couple of months, though, my transfers were becoming problematic again, even with the power adjustable seat. This expensive adaptation only bought me eight additional months of driving.

The third challenge was one that I had not mentioned here before, and that I wasn't even aware of until the last month or so. I used my right hand and arm to operate the steering wheel, by gripping something fondly referred to as a suicide knob. Of late, however, it had become increasingly difficult for me to make 90° turns as required at intersections, because of weakness in my right arm and hand. On my last couple of drives I even found myself briefly letting go of the gas lever with my left hand to assist my right hand in turning the steering wheel at intersections. This caused me to unexpectedly decelerate when negotiating certain right and left hand turns – sometimes at busy intersections. It would only have been a matter of time before somebody rear-ended me.

I'm aware that there are more extraordinary driving accommodations that I could still employ. For example, I know that I could drive using a joystick-like device. If my disability was stable- if I wasn't constantly getting worse- then incorporating these adaptations might make sense. But enough is enough. It's time to let it go.

So it was the confluence of these three factors that led me to the decision that I'd been dreading for months, maybe even years. However, because of changes that we've made in our lifestyle, most notably because of relocating to a very walkable neighborhood, this loss may not be as bad as I had once feared. The experience might be less than traumatic.

Why am I not more distraught? Have I compensated that well or am I simply becoming proficient at coping with loss? Probably a little of both.

This long anticipated day is finally behind me, and I didn't injure or kill anyone in the process. I didn't even have a fender-bender the entire 6½ years that I drove with my hands. I'm comfortable that I gave up driving neither prematurely nor belatedly. (Even if I did, would I admit it?)

There are several public transportation options available to me from my new house. I'm going to start trying them out. Rest assured that I'll report back here regarding the experience.

So how do I feel about this loss? I’m experiencing several emotions, but chief among them is simply relief.

There. Done. Moving on.

My Disability Status

(Photo credit: Wikipedia)

In the United States there is a progression of steps that one must go through to fully transition from a healthy worker to a disabled non-worker with benefits. In my case I was fortunate enough to have private disability insurance through my employer in addition to government disability insurance (Social Security).

In May of 2009 I stopped working and began the process of applying for both of these programs. Despite the horror stories I had heard, I qualified without difficulty. That was a mixed blessing. I certainly dreaded an ugly appeals process and maybe even being required to return to the workforce with my tail between my legs. But getting so easily approved was confirmation that I was, well, a hurting unit. That was the mixed blessing part. I wrote about my initial disability approvals here.

My private disability insurance is two-tiered. For the initial 2.5 year period I only needed to establish that I could no longer perform my current occupation. After the 2.5 year period, which ends this month, I would be required to meet a higher standard. I needed to prove that I could no longer perform any occupation for which I was qualified. This summer, well ahead of the deadline, my private disability insurance company buried me with a mountain of paperwork that my doctors and I needed to dig out from underneath.

We completed our documents, sent them in, crossed our fingers, and held our breath. A few short weeks later, we get the "good news" that I am so disabled that I can't perform any occupation. As such, the insurance company is going to provide me with a monthly stipend until I'm 65 years old. Unless I get better, which is almost certainly not going to happen, this portion of my income will be the status quo for the next 17 years.

The other milestone that occurred 2.5 years after my last day of work, rounded off to November 1 of this year, is that I now qualify for Medicare, which is the public sector insurance most closely associated with elderly people in the United States, but also available to disabled people. So now I have low-cost medical insurance through the federal government. Not bad.

In terms of coverage, Medicare is very similar what I've always had through my employer, with one exception. My old insurance would only pay $3000 toward a power wheelchair, which is a ridiculously small amount. Therefore, my inside-the-home wheelchair, as opposed to my iBot which is primarily my outside-of-the-home wheelchair, is a very basic unit without many of the features that full-time wheelchair users should have. Now, with Medicare, I can own a power wheelchair that will in fact meet the needs of someone who spends 16 hours a day, seven days a week in a seated position. I just began that approval process, and I'm expecting a shiny, new wheelchair for Christmas (give or take a couple of weeks).

There is one disconcerting aspect of Medicare that I'd like to address here. As I explained above, there is a waiting period of 2.5 years after you stop working due to disability until Medicare kicks in. That was an inconvenience for me, but I was able to bridge the gap because Kim has private, family medical insurance available to us through her employer.

However, what if I had been the sole employed member of our family? What if Kim was a stay-at-home mom? What would we have done? This 2.5 year waiting period is something that I just cannot get my arms around. If someone goes on disability, it is almost certainly because they have a severe medical condition that requires significant, urgent, and expensive care. Yet, if the individual is no longer employed, which he isn't if he is going on disability, then he has no affordable, private medical insurance and he has no public medical insurance. This is just crazy!

I have a friend, let's call her Jill, who has progressive MS and is the only member of her family with medical insurance available through her employer. By all rights she should no longer be working. Continued employment can't be good for her advanced MS. Yet she feels she has no choice, because if she goes on disability then there will be no medical insurance for herself for 2.5 years, and no medical insurance at all for her husband and children. This is just crazy!

Now that I have my permanent, private disability insurance approved, and now that I have Social Security income and Medicare, my situation appears stable until I reach age 65. At that point I will lose my private disability insurance, but Social Security and Medicare will stay with me until I die, hopefully at a ripe old age, and hopefully cured of MS (ha, ha, good one Mitch).

I may be overly optimistic. Given the budget cuts that are being considered by our federal and state governments, I could very well see my public sector benefits erode over time. But I have a suggestion. Let's find ways to balance our budgets that don't further disadvantage the most vulnerable members of our society. Wouldn't that be nice?

My Withering Left Hand

When I started down this path 11 years ago, I knew nothing about MS. I didn't know anyone who had it. I didn't know how it could affect a person. Now, unfortunately, I’m a bit of an expert.

MS manifests itself differently in each person, but for me it has been a left-to-right and a bottom-to-top disease. Problems started in my left side and moved to my right side over time. Problems started in my legs and moved up over time. About three years ago, when both legs had become nearly useless, my upper body started to show the effects of the disease. Now my legs are dead weight, and the left/right game is being played out above the waist. My left hand is severely disabled, and although my right hand is far from healthy, it's hanging in there.

Given that I'm right-handed, I feel fortunate that this will be the last man standing, so to speak. Of course nobody asked me 10 years ago, but if they had I would've preferred that my right hand be the final appendage voted off the island.

So what's going on with my left hand? It functions kind of like a pair of pliers – a very weak pair of pliers. For example, I can't grab a bottle of beer and drink it with my left hand, but I can pry my fingers apart, plop a bottle of beer in my lap, and keep it in place for a few minutes with my left hand. Now that's useful!

I can't use my left hand to help me open bags or bottles or cans or boxes. Those become single-handed tasks. It’s of no use to me for washing or grooming. I don't use my left hand at the dinner table. It lies passive at my side. I'm able to make some use of my left hand for helping me to zip up a jacket. I can sometimes grip the bottom of my coat just enough to hold it down as I use my right hand to pull up the zipper. But I fear that this ability is short-lived.

Luckily my left hand is securely connected to my left arm. Although I can't lift my arms above my head, for tasks below my neck my arms are still relatively strong. I can enlist my arms to raise my body enough to transfer from wheelchair to bed, wheelchair to wheelchair, or wheelchair to toilet, for example. When I do this, I again make use of my left hand like a weak pair of pliers. If my left hand can grasp something it tends to anchor my arm enough so that I can accomplish the transfer.

I use a standard, no frills, power wheelchair in the house. It's more maneuverable than my iBot, and this allows me to save miles on my iBot and hours on its batteries. This chair only requires that my left hand can wiggle the joystick ever so slightly, and I'm still able to do that. Controlling my wheelchair with my left hand is preferable, so that my relatively capable right hand is available for all other tasks. The operation of my iBot, however, requires more hand dexterity and strength, because of all the buttons and knobs that I must manipulate in order to take advantage of the various modes of operation. Almost a year ago I relented and moved my iBot controller from the left side to the right side. Because my good hand is otherwise occupied, there’s no zipping down the sidewalk while enjoying an ice cream cone in my iBot.

This is all well and good, but the horrible part about MS is not so much what it has already done to you, but what it might still do. I look at my left hand and I know I'm seeing the future of my right hand. Despite the fact that I have a loving support system, adequate financial resources, and a resilient (if not sunny) disposition, and even though I won’t be the first person to ever face such hardship, it’s shit like this that keeps me awake at night.

Taking the iBot to Crotched Mountain

Kim and I recently took a hike in the woods.

“But Mitch, aren’t you in a wheelchair?”

Yes. Yes I am.

Please visit the Crotched Mountain Foundation to learn more about their accessible hiking trails.

Please visit www.savetheiBot.org for more information about how to help save this life-changing wheelchair.

Click here (and then scroll down) to read my other iBot posts. 

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It's My 10th Anniversary!

A mere 10 years ago today, my life changed forever. I was betrothed to a first class bitch.

She's overbearing, thoughtless, and unrelenting. She takes from me anything that she covets, without consideration of my feelings. She accords me no privacy, remaining by my side 24/7, as if I’m not to be trusted. I've tried to leave her multiple times, but she always finds me wherever I go.

Ya, ten years ago today I was diagnosed with Multiple Sclerosis. What a bitch...

For my diagnosis story, click here, here, then here.    

Home Improvements – #1

As I mentioned in my previous posts, here and here, we recently moved into a new home which has great potential for becoming wheelchair accessible. But it has a few opportunities for improvement (language eerily similar to that used by my bosses in every annual performance appraisal I ever received).

My friend Preston twice made the long drive to our house to practice his amateur carpentry skills. I would hold his finished product quality up against any professional’s. More importantly, his generosity and compassion far exceed the usual and customary friendship requirements. Thanks Preston.

First, I needed a ramp and platform system that would allow me to access the entry door from the driveway or from my minivan. Below are some photos of what Preston built for me on the same day that we closed on the house. Kim installed the stone paver landing at the bottom of the ramp. Her level of commitment goes way above and beyond the usual and customary expectations of a spouse/caregiver as well.







The house has a small porch looking out over our modest ocean view. The only problems were the 8 inch step-up from the ground to the porch, and the 7 inch step-up from the porch to the back door. The obvious solution was to build two ramps, but then Kim came up with a better idea. If we built a 7 inch tall pressure-treated lumber deck on top of the concrete floor of the porch, we would only need one ramp from the porch to the ground. So that's what Preston did for us on another weekend.

Here are some photos showing the construction of the raised floor.







Upon further consideration, we decided to make do with the portable ramp from the deck to the ground for now. Kim is going to install a stone patio next spring where the ramp will land. We’ll wait to build a permanent wooden ramp until after the patio is in place.

Kim and I recently christened our new, accessible, porch.





I’ll share some other home improvement projects with you as they are completed.

Tailgating Tales

Although my house is set up for optimum comfort and accessibility, I am occasionally (ok, often) compelled to leave the nest and venture out into the real world. Sunday was one such day.

We've established an annual tradition of attending a New England Patriots football game at Gillette Stadium in Foxboro, Massachusetts. Each of the last three years we've made the trek with our good friends Preston and Nancy. This year we had sunny skies and ridiculously warm temperatures – in the mid-80s in mid-October.

When four people outfit themselves for a day of tailgating and football, it is truly a complex undertaking. But when you incorporate a cripple like me into the equation, the level of coordination rivals that of a shuttle launch. Suffice it to say, there were Excel spreadsheets involved.

The first order of business was food (in my 20’s it would've been alcohol). Friday and Saturday were all about cooking and shopping. The list of edible delights included: chicken, ribs, hamburgers, hotdogs, chili, chocolate chip cookies, very chocolaty brownies, special party mix, etc. Although I've become a calorie counter out of necessity, I declared a diet holiday last weekend.

On Sunday morning we staged everything just outside the van – food, drinks, coolers, chairs, folding table, grill, and more. But we couldn’t pack many items because most of the floor space needed to be left open for my rather elaborate loading procedure. My station in the van is that spot normally occupied by the front passenger seat. We fastened the iBot to the floor with four heavy-duty tiedown straps. Then we fastened me to the iBot using the seatbelt. Only after all of this fastening occurred, did we pack the gear in behind me.

We made it about halfway from South Portland, Maine to Foxboro, Massachusetts, before it was time for a pee break (for everyone). Since we forgot a couple of items – my spreadsheets are still a work in progress – we stopped at a grocery store to kill two birds with one stone. We unpacked much of the van, took off my seatbelt, unhooked the four tiedown straps from my wheelchair, and I rolled down the ramp. Then, before we could go into the store we had to temporarily reload the van and lock it up. We went to the grocery store, did our business, and then repeated the entire process in reverse.

You've just got to be patient, and we were.

When we arrived at Gillette Stadium I did the iBot equivalent of stretching my legs by immediately going into balance mode. While the others unpacked and set up, I surveyed the large handicapped parking lot that we had been directed to. I got the feeling many of the vehicles in this desirable parking area didn't contain any disabled people at all. Yet, since many disabilities, including some manifestations of MS, can be invisible to the naked eye, I couldn't suspect any particular group of having cheated. Oh well, I didn't give the issue much thought, as this day was all about feasting and fun.

Several hours later, on our way from the parking lot to the stadium, I took a detour to the bathroom. As I approached the handicapped stall, I noticed that the door was closed, but I could not be certain if there was anybody in the stall or not. So I reached forward and gently pulled on the door. It opened. Immediately, a gruff voice shouted "Jesus Christ!" He got up off the toilet and angrily closed the door. Then he yelled at me, “Thanks a lot!”

Oh boy. Game on.

Let's review.

First, this healthy person decided that he needed to take a dump in the only handicapped stall in the bathroom. I know that some of my disabled brethren have no sympathy for healthy people who use the handicapped stall under any circumstances. I, however, take a softer stance. I only feel wronged if someone chooses to use my toilet when there are other toilets that he could have used instead. In this case, there were waiting lines to every stall, so I can assume that he didn’t pass over a normal stall for my handicapped one. I would have typically waited in a semi-patient manner, but he screwed up.

Second, he sat down on the toilet without latching the door. If you do that, and someone opens the door, then you just smile sheepishly and say, "Oops. I'm sorry. I'll just be a minute." But not this asshole. He acted as if it was my fault that he had failed to latch his door.

I positioned myself in such a way that he would have to be deaf and blind (no offense to my deaf and/or blind readers) to not realize that the person he had just lashed out at was a wheelchair user.

I responded to his "thanks a lot!” in my most forceful and sarcastic tone with my own "you're welcome!”

There was silence, and I have to guess, some amount of mental backtracking by the asshole.

I sat outside the stall with arms folded, staring straight at the door, silently rehearsing my speech. But this moron did what most of them do when confronted with irrefutable evidence of their deficiency. He barged out of the stall and somehow managed to slither by me without even making eye contact. I hope I ruined his day, but somehow I doubt that I did.


The Patriots beat the hated Jets 30 to 21. Yea! It was simply a wonderful outing- good weather, great company, hometown win, and the electric atmosphere of an NFL rivalry game. But when 70,000 people attempt to funnel out of a stadium all at once, it's not so different from watching a herd of cattle get squeezed through a narrow gate. I find it best to be in balance mode in these instances, otherwise my face is at ass level, which can be largely unpleasant. Also, in standard wheelchair mode I am unable to see above the crowd, which is a slightly helpless and somewhat claustrophobic experience. I must admit though, my mood can become a bit frisky, even aggressive in this setting. If I spot an opening, I go for it.

Sometimes, in the helter-skelter of a mass exodus like this, minor collisions occur. I was going straight. He was cutting from left to right, and moving against the flow. It could be argued, no doubt, that I was accelerating too quickly for the conditions, although I’m not promising that I’ll behave any differently in the future. I hit him pretty hard on the shin with the corner of my wheelchair. He exclaimed immediately and in this order, "ouch," and then "I'm sorry." That's right. I ran into him, and he apologized to me. (I started to apologize myself, but before I could even get it out of my mouth we were lost to one another in the mob.)

To be fair, I encounter a lot more people like the second guy (who instinctively blamed himself) than the first guy (who instinctively lashed out). If this were not the case then I probably wouldn’t enjoy leaving the nest and venturing out into the real world as much as I do.

Neighborhood Excursion #1 – Bug Light Park

I posted here and here about our recent move to a more walkable neighborhood. I plan to make a series of slideshows and/or videos where I share different excursions that I take in my new neighborhood, using my iBot wheelchair. Here is the first such slideshow, my excursion to Bug Light Park (not Bud Light). The one-way trip from my house to the park took 18 minutes. The video, however, is less than 5 minutes long.

Enjoy.

Guest Blogger- Kim

I’ll start by introducing myself, since I have been invited to be a guest blogger at EnjoyingtheRide.com. I am Kim, wife of Mitch, mother of Amy & Zach, a middle school counselor, and caregiver for my husband of 25 years (in no particular order). These various roles definitely conflict with one another from time to time.

For example, when we moved to southern Maine 11 years ago, I started in my position as a counselor at Cape Elizabeth Middle School. My daughter was a student at the same middle school at that time. Imagine for a moment what it may have been like for me as I simultaneously fulfilled the role of the mother and school counselor of an emotional teenage daughter. Can you envision any situations over a three year span where it may have been difficult to be both people? I probably averaged one situation a day, but thankfully the memories fade over time.

Two other roles I have that compete with each other, even more than being my daughter’s middle school counselor, are being both the primary caregiver and spouse for Mitch. We have been a couple for more than 31 years, and the role of spouse has been one of the most enjoyable and fulfilling experiences of my life. Being the caregiver for my husband, on the other hand, has been one of the most challenging. To be the one who has the sole responsibility of taking care of the maintenance of our home inside and out along with working a full-time job is difficult enough. Beyond this, I sometimes feel like I am on call 24 hours a day, whether it be to help dress my husband, prepare his meals, or to come when he calls my name. I worry about him falling or needing me while I am away. And I also feel guilty whenever I get angry, frustrated, or afraid with what I have to endure in my life, in our lives.

With this being said, many people have asked how I stay so positive, and continue to live life to its fullest. My list of “secrets” is short and much of it mirrors Mitch’s view of the world:

• Live in the moment as much as possible, trying not to dwell on the past or worry about the future
• Don’t get drawn into negativity that sometimes finds its way into your day
• Surround yourself with good people - those who are honest, caring, hard-working & true friends
• Find the positive in all situations, even if seems tiny & irrelevant
• Don’t just complain about things; look for solutions whenever possible
• Treat others the way you want to be treated

To help me fulfill my care-giving responsibilities, more importantly than any of my “secrets” listed above, I recognize how much joy I get from my other jobs: a middle school counselor, the mother of Amy & Zach, and most rewarding - the wife of Mitch.

What to do? What to do?

I launched this blog over two years ago to help pass the time while engaged in a productive activity – advocating for the disabled community. So, have I done that? To a large extent, I think I have.

By disclosing my day-to-day challenges, and revealing my innermost fears and concerns, I've shed light on the kind of issues that many healthy folks are oblivious to. Perhaps I’ve helped some people to better connect with their disabled friends, neighbors, and loved ones. By sharing my general outlook on life and some of my coping mechanisms, I hope I've helped disabled folks in some small way as well.

OK, but enough tooting of my own horn. That is not the purpose of today's post.

I'm not a dedicated researcher. I no longer have the energy or the inclination to be the authority on emerging topics in the medical field. I suggest you go elsewhere for that information. I don't write elegant prose. If that's what floats your boat, I can recommend several other blogs authored by more skilled writers, and of course there are always the popular books and journals.

What I think I do a passable job of writing about are the following:

1. My personal story, which is fairly unique, and when conveyed with honesty can even be compelling at times.

2. My personal beliefs and opinions on selected subjects, which, when expressed clearly, might cause you to stop and think a little bit. I know I always enjoy reading a piece that prompts me to find my philosophical bearings.

I walk a fine line in my writing, describing my circumstances frankly so as to lend authenticity to my message. I do this, however, at considerable risk.  The last thing I want is for my portrayal to be misperceived as self pity.  It’s a fine line.

I try to post at least once a week. Today, it is been a week and a day, and I don't have anything written. So this may be as good a time as any to ask for suggestions from you, the readers.

What would you like to read more about here? Where would you like me to go with the blog? What types of posts have you enjoyed, and what types of posts could you do without? Feel free to leave your responses in the comments section or send me an e-mail at email@enjoyingtheride.com.

Thanks for taking a few minutes to help me overcome my blogger’s block. I need ideas!

Moving (part 2 of 2)

The problem wasn't finding a suitable neighborhood. The problem was finding a wheelchair accessible house or condo therein. Since all of our target neighborhoods were of the urban variety, the houses tended to be old, undersized, and, well, vertically oriented.

We listed our house in May, brimming with enthusiasm and a sense of adventure. By mid-July we were thoroughly disillusioned. We had grown weary of keeping the place "show ready." We were annoyed with having to repeatedly vacate our house on sometimes short notice, only to learn that the prospective buyers were not interested for any of a number of legitimate or sometimes utterly baffling reasons. We were sick and tired of searching online for a house that seemingly did not exist (with one exception). We halfheartedly dragged ourselves through houses that we considered long-shots at best. We decided to endure this process only until the end of July, and then we would resign ourselves to staying in our existing house, which was not a bad situation at all; it just could have been better.

In June, not long after we listed, Kim stumbled upon the only house we ever found which met our search criteria. When we did our walk-through, it was an obvious match. We didn't get our hopes up, however, as we needed to find a buyer for our house before we could even make an offer, and we hadn't had much action on that end at all. Our realtor, usually the eternal optimist, served up a dose of reality as well by predicting that the house we loved would not stay on the market for more than a few days. Luckily, she was wrong.

In late July, just as we were losing interest in this whole undertaking, a gentleman with MS and his wife found our house, and fell in love with it. They were looking for a suburban home that was handicapped accessible. Remarkably, nobody had yet scooped up our target home- thank you Great Recession! So, over a period of a few days we simultaneously negotiated sales and purchase contracts on both homes. It all came together, and on August 26 we closed on our old house at noon and on our new house at 1:30. We were officially homeless for 90 minutes.

It was particularly satisfying to sell our house to someone with a disability. We had put considerable effort into modifying the home to make it accessible for me, and it was comforting to know that those modifications would continue to serve the next family who lived there.

Not onlywas it heartwarming to welcome people whose lives would be improved into our former home, but it was also satisfying to, for once, financially benefit from being disabled. I believe that we sold that house only because it was handicapped accessible. If this had been a non-accessible house, it might still be sitting on the market, like most other houses that are for sale today.

Our new house is not truly handicapped accessible, yet. However, it has the basic layout that will allow for adaptations. Most of the doorways are 36 inches wide. There are no elevation changes inside the house. The master bedroom and bathroom are spacious. The living room, dining room, and kitchen are one open area. The hallway is wide. Nevertheless, I was still concerned that we had overlooked something. I feared that once I got into the house and spent a couple of days I would say, "Oh crap!"

But that hasn’t been the case at all. In fact, I estimate that 90% of the features of the house were more or less what I had expected. Of the 10% of the features which were a surprise, probably 8% of them were of the pleasant variety, and only 2% were of the unpleasant variety. With a grab bar here, a lowered countertop there, and a new roll-in shower, this house will be well-suited for a wheelchair user.

Here we sit in house number six. I don't know why we would ever move into another one, but we always say that. I’m not in the habit of contemplating the future anymore, though. I'm finding that life is best digested in bite-sized portions, one day at a time. When I find myself pondering long-term scenarios, it becomes too much to swallow.

How am I feeling today? Today, I just love my new house.

If you’re in the neighborhood, please stop in for a visit. Flowers and vegetables are nice housewarming gifts. Beer and wine are better ones.


The view of Portland on Saturday, from the bridge which is a 5 minute walk from our house.

Moving (part 1 of 2)

It has been said that a home is the biggest purchase you'll ever make. We just made our sixth biggest purchase you’ll ever make. It's a bit absurd that we’ve owned so many houses. In our minds, however, we've always felt that each move was warranted, and this one was no exception.

Living in the suburbs has a certain appeal. The area where we lived was lovely. The lawns were well kept. There were so many trees around- even a strip of trees down the middle of the street. They were brilliant green in the spring and summer, and they exploded with color in the fall.

But all of that can get a little boring. People who live in the suburbs tend to get in their cars and go to stores, restaurants, bars, etc., with regularity. The appeal is that you live in a pretty little slice of pseudo-nature, and you can get to where you need to go quickly and easily. But when you can't drive, then this idyllic notion of suburban living begins to fall apart. Life becomes a glorified house arrest.

Our new place is in the city. There aren't as many trees, and I'm surrounded by businesses. I don't hear geese honking, but instead I hear planes landing, and I’m immersed in a variety of other urban chatter too. I'm no longer living in this mini utopia of a suburban home. I'm right in the middle of things, and I think that's where I need to be at this point in my life. I had become tired of staring at trees.

Within walking distance, or wheeling distance in my case, I have access to:

• a post office
• the city municipal offices
• two major grocery stores
• Police and Fire Stations
• A huge drawbridge
• one really cool corner store/butcher shop
• a gourmet sandwich and wine shop
• one higher-end restaurant
• six or seven medium-end restaurants
• a dozen or so fast food or lower-end (quaint) restaurants
• several bars ranging from snotty to redneck
• two city parks
• a nice walking trail that leads to a lighthouse
• a couple of places to get my hair cut
• a bunch of shops such as hardware stores and drugstores and other specialty stores
• my bank
• my primary care physician – yes, my primary care physician that I’ve been driving to from the suburbs for 11 years.

And downtown Portland, with all of its amenities, is only a 30 minute walk away.

If only there were a dentist and a chocolatier in the neighborhood, I might never have to leave.

I've made a couple of test runs around the community, to gauge the accessibility of the sidewalks and of the various businesses. It's a mixture of good and bad, as you would expect in an older, urban neighborhood. I've seen classier city neighborhoods, such as where my friends live on Tremont Street in Boston. My new neighborhood was in decline for most of the previous 15 years or so, but now seems to be making a comeback. As such, there exists a blend of shiny new buildings and interesting businesses, alongside vacant spaces and dive bars. In this sense, I suppose my neighborhood embodies a cross-section of Americana, especially in these tough times.

But location was only half of the equation. The other requirement was to find a home that would work for me internally – a home that was wheelchair accessible or could easily become such, like the one I was leaving. This was the more difficult task, and I'll discuss it in my next post.

Here’s one quirky story about my new neighborhood. The enormous, white german shepherd who lives next door wails like a siren whenever he hears a siren, and since we're not far from the police and fire stations, this has been a couple of times a day so far. I’ve never heard a more spot-on siren impersonation.

Empty Nest…Different Nest

(Photo credit: Robert S. Donovan)

Today our youngest child left for college. Although the tuition costs will be daunting, I half expect our finances to improve on balance. Our grocery bill and electric bill should be a fraction of their former selves.

With our older child already living in an apartment and going to grad school, we are officially in the empty nest stage. There's a lot written about the pros and cons of this period of life. The consensus seems to be that once you get over the shock, it can be a very enjoyable phase. I expect that to be the case, but of course MS will throw a wrench in the works.

Kim is my primary caregiver. She does 95% of what I need done. But Zach was our 5% backup, and that was an important 5%. For example, in May Kim was able to attend an out of town conference because Zach was here to help me out. I'm afraid that may have been her last overnight business trip. At the same time that we’re experiencing a decrease in caregiver availability, the need for caregiving continues to go up a little each day, as MS continues to work its magic on my central nervous system.

One way that we are compensating for this imbalance is to relocate from the suburbs into the city, much closer to where Kim works. In a pinch she can zip home and extricate me from whatever dilemma I’ve gotten myself into. Also, I plan to come out of my introverted shell, to charm and enchant any number of unsuspecting neighbors for the express purpose of being able to call on them if I can't reach something on a high shelf, for example. Who knows, maybe I'll discover that getting to know people and making new friends might be enjoyable as well as utilitarian. I'll report back later and let you know.

We’ll be leaving our suburban nest for our urban one over the next couple of days. Wish us luck.