Monday, December 29, 2014

Annual Report 2014

It’s that time again, when I take a moment to assess what I've gained and lost in the past year, and what changes may await me in the coming year. As you know, I try to strike a balance. I don’t sugarcoat my condition, but neither do I wallow in self-pity.

Mine should by no means be considered a typical disease progression. With MS, there is no such thing as typical. Everyone’s experience is unique, but, because you read this blog, you’re intimately familiar with at least one person’s narrative. Feel free to review my 2011, 2012, or 2013 assessments. I suppose you could say I did this for 2010 as well, but it’s in the form of a poem.

So, how did 2014 treat me? Quite roughly on the health front, I’m afraid, but not so badly in other ways. Here are the highlights:

2014 Negatives:

  • I had my last infusion of intrathecal methotrexate. It seemed to halt my disease progression in 2012, but in 2013 my progression returned, so I saw no reason to continue this treatment very far into 2014.
  • I had more difficulty eating, drinking, and grooming.
  • Stress injuries to my left bicep tendon and left wrist plagued me all year, leaving me with essentially one useful appendage, such as it is. An orthopedic doctor saw nothing he could do for my left bicep tendon. A different orthopedic doctor gave me a cortisone shot in my left wrist. Both areas are still problematic, but I feel that very slow healing is taking place.
  • My handshakes have become wimpy, indicating that my one useful appendage is continuing to weaken.
  • Spasticity, particularly the nighttime variety, increased in intensity and frequency, and also spread to my arms and hands, not just my legs.

2014 positives:

  • Physical therapy continued to help me maintain some strength and flexibility in the face of disease progression.
  • We installed an overhead lift system, and it was covered by insurance, thanks to the hard work of my occupational therapist and my primary care physician’s office.
  • I published another column in MS focus magazine.
  • I was profiled in Everyday Health.
  • I took some time to improve the blog site.
  • After a year and a half, I got a local park pathway installed, and had a newspaper article published about it.
  • I got my medical marijuana card.
  • My daughter is now engaged to a nice young man.
  • Throughout the year I spent a lot of time on my secret project. I may tell you what it is in 2015.
  • I spent another year above ground – still preferable to the alternative.

2015 potential losses (if my disease progression continues these things may be the things that I lose next)

  • More eating and personal grooming challenges.
  • Eventually my bladder is going to stop working, and that is really going to suck. This could be the year.
  • A few things that I can’t even imagine (the devil I don’t know)

2015 potential gains
  • Saving the iBOT – maybe this will be the year of its revival.
  • More writing success at the blog and elsewhere.
  • Regaining utility in my left arm as injuries heal.
  • A few positives I can’t even imagine (I am in Las Vegas this week trying to win the big jackpot, for example).
I conduct this thorough review only once each year for a couple of reasons. First, it takes that long for me to determine if certain changes are the result of permanent disease progression or are merely the normal ups and downs from aging, seasonal affective disorder, or my body's sympathetic response to the menstrual cycles of the various women in my life.

Just as importantly, I only do this once a year because it can be a harrowing process. As I contemplate my losses and gains, I tend to extrapolate – envision what my life will be like down the road if the disease progression continues at this rate. I am concerned for my future health and fearful for my future happiness. But, if fifteen years ago I had been given a preview of what my life is like today, I would have been concerned for my current health and fearful for my current happiness. But I would have been at least partially wrong, because I'm currently enjoying my life. It's more than just a blog name.

So I wonder, will I be able to maintain a level of contentment no matter where the disease takes me, or will my pool of resilience eventually run dry, and the future conform to my worst fears? I don't know the answer to that question, but as long as I continue to share my journey with you, I promise to render an honest assessment.

Wednesday, December 24, 2014

Thank You and Happy Holidays!

Kim and I would like to to thank everyone for sharing in our journey again this year. Those of you who actively participate at this website as well as those who simply read my posts in anonymity, all help make our days more interesting and meaningful.

If you celebrate Christmas, or even if you don't but you want to see something cool, please click here for a fun holiday card from Kim and me.

Wednesday, December 17, 2014

Medical Marijuana

I have decided to give medical marijuana a go. Why the hell not? Even if it doesn’t help, I’m confident that experimenting with it won’t hurt, and either way I will be a more worldly person for having tried.

Maine is one of twenty-three states (and the District of Columbia) which allow the use of medical marijuana. Alaska, Oregon, Colorado, Washington, and the District of Columbia have gone a step further and approved the recreational use of marijuana by adults. I live in South Portland, Maine, and in November of this year we approved recreational use of marijuana within our city limits. Our neighbor, Portland, made the same move last year. Like gay marriage before it, this issue is approaching critical mass nationwide. The times, they are a changin’.

In our state, only a physician or a nurse practitioner can certify patients for the program. In general, traditional physicians shy away from this activity. However, there are medical practices set up specifically for certifying patients. I did a Google search and found Integr8 Health in nearby Falmouth. When I called to set up an appointment I learned that the fee would be $300, in advance, no matter the outcome of my evaluation.

These are the qualifying conditions in Maine:
  • Chronic Pain (Which has not responded to conventional therapy for more than 6 months)
  • PTSD (Post Traumatic Stress Disorder)
  • ALS (Lou Gehrig’s Disease)
  • Alzheimer’s Disease
  • Cachexia (wasting syndrome)
  • Cancer
  • Crohn’s Disease
  • Glaucoma
  • Hepatitis C (active form)
  • HIV
  • Inflammatory Bowel Disease (IBD)
  • Seizure Disorders
  • Severe Muscle Spasms (Including MS and other diseases causing severe and persistent muscle spasms)
  • Severe Nausea
  • Dyskinetic and Spastic Movement Disorders (including Parkinson’s disease, Huntington’s Disease, and others)
Because of my MS muscle spasms, I was confident I would be approved.

When I arrived at Integr8 Health’s office I was greeted by a pleasant and chatty receptionist, who immediately put me at ease. She indicated that I would be seeing a nurse practitioner for my evaluation. After a short wait, the nurse came out and introduced herself, and led me to her office. I sat in my wheelchair, and she sat on her bouncy ball chair. Any worries I had about qualifying for the program were allayed when she shook her head and said, “Why have you waited so long to come see us?”

We had a nice discussion about the various ways that medical marijuana might benefit me. We spoke for almost half an hour. She then indicated that I would need final approval from their physician, because at the time nurse practitioners were not allowed to qualify patients – that has changed in just the past few months. I met with the physician briefly, and based on the report from his nurse practitioner he signed off on my certificate.

This certification allows me to cultivate up to six flowering plants, have a licensed grower cultivate plants for me, purchase up to five ounces per month from the dispensary, or any combination thereof. That’s a lot of weed, man.

The nearest dispensary to me, Wellness Connection of Maine, is only a couple of miles away, in downtown Portland. When I approached their entrance, inconspicuously located at the rear of a building, someone from inside noticed me and sprang into action, opening the two sets of double doors. I indicated that I would be a new customer, so I was introduced to an intake specialist. She was a pleasant young lady who, either through experience or training or both, knew a lot about medical marijuana. After I showed my certificate and proof of identification, I was buzzed through another set of security doors into the inner sanctum.

It was a comfortable setting. There were tables, chairs, and sofas. I was offered coffee, tea, or water. In Maine, consumption of medical marijuana is not allowed at dispensaries. The centerpiece of this room was a glass display counter, not unlike what you might find at a bakery. My guide sat down with me and explained the various strains of marijuana that they had in stock, and what the characteristics of each strain were. She explained the various delivery systems including smoking, vaporizing, and ingesting.

We decided that vaporizing made the most sense for me. Vaporized marijuana is healthier for your lungs than smoked marijuana. Also, vaporizers produce almost no odor. Of course they offered a vaporizer for sale at a discount price. “Sure,” I thought. “I’ll go home and price it on the internet and find out just how good their discount is.” At the end of my orientation I thanked my host and went home to do my research. I was surprised and pleased to find that the vaporizer they offered was highly rated, and I couldn’t beat their price, even on eBay. I returned to the dispensary and purchased their vaporizer. Then I approached the sales counter and decided to quiz the attendant about which strains I should purchase, as a double check on the young lady who had helped me earlier. His recommendations were identical. I went ahead and purchased a sample pack of three different strains of medical marijuana.

Once I have given this medicine a thorough trial, I’ll report back here on its effectiveness or lack thereof. After the way I had to sneak around when I dabbled in marijuana during college, my medical marijuana experience has thus far been nothing short of surreal.

Monday, December 15, 2014

Book review: Chef Interrupted by Trevis Gleason

I had previously known Trevis Gleason only as the popular blogger at Life With Multiple Sclerosis. Within the constraints of this platform, he dispenses his wisdom, humor, and charm in 500 word snippets. But in Chef Interrupted Trevis throws off the shackles of forced brevity and reveals his considerable storytelling acumen.

When Trevis sent me, a fellow MS blogger, an advance copy, I devoured the book in no time at all. It’s a delightful read for anyone who longs to find meaning by going back to their roots, in this case his ancestral homeland of Ireland.

In this memoir, Trevis expertly blends an array of themes into a seamless mosaic. His stories are about realizing the dream to become immersed in rural Ireland, if only for three months (in this book). It’s about the connections he made with the people and with the land, and experiences he shared with folks from home who dropped in and out of his life, and his rented cottage, during that time. It’s about a fondness for good food and drink, and a loyal, furry companion. And yes, it’s about living a full life despite a debilitating disease.

You’ll think a little differently about multiple sclerosis and about the Emerald Isle after seeing them through Trevis’s eyes.

Chef Interrupted: Discovering Life’s Second Course in Ireland with Multiple Sclerosis will be released on Amazon on March 1, 2015, but is available for preorder today. Click here. I highly recommend it.

Tuesday, December 9, 2014

Does Personality Change Because of Disability?

I’m not the same person I used to be. At least I don’t think I am.

For example, before I was diagnosed with MS and for a short time afterward, I didn’t have a lot of empathy for disadvantaged people. I assumed that most of these folks deserved their lot in life, and only a small percentage suffered from misfortunes that were not of their own making. I assumed the bigger problem in society was not that people were hurting too much, but that too many people were taking advantage of the system. I (mostly) joked that an effective welfare program should consist of nothing more than blankets and soup.

Today, having spent so much time with people who are suffering, and having suffered myself, my attitude is reversed. I now assume that the majority of disadvantaged people are that way through no fault of their own. I have come to realize that we need to do more to help people, not less. The fact that some are cheating the system is an unfortunate side effect of well-intended programs, not a reason to cancel these programs.

I’ve also changed in other ways. I used to keep my emotions bottled up, and I considered this a strength of character. I would almost never discuss how I felt about things that were going on in my life. That was nobody’s business.

I’m still a levelheaded person, and I believe this serves me well, given all that I am going through. But I must (sadly) admit that I do have feelings, and I no longer keep them unexamined and private. When I decided to become a disability advocate, and write a blog about living a contented life as a disabled person, I became introspective. I had to. Otherwise, my writing would not have been interesting or relevant.

I could go on. My life has changed in so many ways. Given this, am I the same person that I used to be, or have I become someone completely different? We could have a subjective discussion about this, but there is an objective personality test which most of you are familiar with. It’s called the Myers-Briggs Type Indicator. I took this test several times before my MS diagnosis, and I consistently came out with the personality type, INTJ, which is rare. Only 2% of people fall into this category. INTJ stands for Introvert as opposed to Extrovert, iNtuition as opposed to Sensing, Thinking as opposed to Feeling (of course), and Judging as opposed to Perception.

If you would like to learn more about this test or take it yourself, click here.

I decided to retake the Myers-Briggs this weekend for the first time since I left the workforce in 2009. I wondered how much I had changed over this period of time. Maybe I had become an ESFP for all I knew. I sat down and took the test, and I was astonished by the results.

I’m still an INTJ. How could that be?

According to Myers-Briggs, my personality type is the same as it always was. I haven’t become somebody new. Yet my behaviors have changed significantly since I became a disabled person. I hardly recognize myself.

I’m no psychologist, but I can make a guess at what is going on here. As the Myers-Briggs test indicates, the essence of who I am has not changed. My view of the world has been turned upside down, but my methods of processing information are the same. It’s just that I’m exposed to different information. I’m not looking at returns on investment for multimillion dollar projects. I’m looking at my friend down the street who can’t get a proper fitting for her new wheelchair. I’m not studying flight schedules to see how many clients I can visit in a week. I’m learning bus schedules to see how I can get to my therapy appointment on time.

I’m not a different person. I’m merely looking at life through a different window.

Tuesday, December 2, 2014

Four Short Takes

Introducing…iConquerMS™. This is a new and different kind of research initiative for MS, launched by the Accelerated Cure Project in Boston, MA. It's dedicated to patient-driven research, based on the novel use of huge amounts of data from all of us living with MS. The initiative’s Internet portal,, is now live.

I already visited the website and filled out all their surveys. I encourage everyone with MS to do the same. This is a wonderful opportunity to contribute to our cause with very little effort, no cost, and most of all, nobody sticking you with a needle.

Upcoming travel: Kim and I haven’t been on an airplane trip since February of 2013, when we vacationed in Jamaica with my brother Tom and his wife Diane. If you recall, that’s the trip where US Air lost both of my wheelchairs for several days. As compensation for that cluster fuck, Kim and I were given enough vouchers to once again take our chances with USAir. We are flying to Las Vegas for the New Year’s holiday. Tom and Diane are coming again, along with my brother Andy and his wife Karen. It won’t only be New Year’s Eve that we celebrate in Las Vegas, however. Kim will be turning 50 while we are out there. Yes, 50.

My abilities have changed since the last time we traveled, so I found a medical equipment rental company in Las Vegas. Desert Medical Equipment will deliver a hospital bed and a Hoyer lift to my hotel room, and charge me $100 per night for the three nights we are there. That’s a significant expense, but things should go so much more smoothly for us. Look for one or more posts about this trip in January.

Newspaper article on accessible pathway: Here’s a follow-up to the blog post I made on November 12, regarding a new accessible pathway around the cobblestone street in my neighborhood. One of the local newspapers heard about the path and called me for an interview. I assumed this story would be buried somewhere in the middle of the paper, but it ended up making the front page. Click here to read.

TED talk on the drug war: I know that I’ve been on a sociology kick lately, but I’ll ask you to indulge me one more time. Here’s the thing. I don’t want more people doing drugs. I don’t want more drug addicts. Yet, I’m starting to warm up to the idea of legalizing drugs – maybe all drugs, but at least starting with marijuana. The war on drugs has been a colossal failure. We’ve ruined so many lives, wasted so much money, and created powerful and terrible criminal organizations. I’m willing to consider drastic alternatives. Please watch this TED video and see if it doesn’t make sense to you.

Tuesday, November 25, 2014

The Social Psychology Implications of iBot Stair Climbing

Yeah, you read that right. This subject is better suited for a PhD dissertation, but instead I’ll tackle it in a single blog post.

On Saturday night Kim and I went out to dinner with our friends Deb and Steve at the Snow Squall, a local bar and restaurant that we absolutely love. I made reservations for their dining room, as opposed to the pub section where I usually sit. This would require me to descend about four steps in my iBot wheelchair.

In years past I was able to climb stairs myself in the iBot, but I no longer have enough strength and dexterity in my arms. I require Kim’s assistance. We arrived at the Snow squall at six o’clock, and the crowd was thin. Kim guided me down the stairs without incident, and we settled in for a leisurely meal.

Throughout the dinner, more patrons arrived, and soon it was a full house. We finished an outstanding meal (Chef Heather cooks no other type), settled the checks, and prepared to ascend the stairs. Allow me to describe the scene, as I imagine it from the perspective of a random patron who dared to watch:
A dashing gentleman in a power wheelchair backs up against the bottom step. A woman, presumably his much younger wife (is he rich?), strikes an athletic pose behind him, one foot on the first step and the other foot on the second. The gentleman manipulates buttons and knobs on his wheelchair controller such that the seat rises a bit and then tilts to the rear. His wife grabs onto the top of his backrest and pulls. Some motor within the wheelchair engages and boosts the front wheels up and over the rear wheels, and the chair is one step higher. This process continues until the chair, its occupant, and its navigator are at the top of the steps, at which time the gentleman pushes more buttons and knobs, and the chair transforms back to normal. Their demeanor throughout the operation is nonchalant. Apparently, this is part of their routine – how they navigate through a disabled-unfriendly world.

Here’s the social psychology implication. There were perhaps forty people in the lower dining room and another forty in the upper pub area. At least half those people had a clear line of sight to me. Yet, as I scanned the crowd, only a couple of them observed me climb the stairs in my wheelchair. Nearly every one of those people must have been fascinated by my chair’s capabilities. Why didn’t more of them watch? I would have watched.

In our society, it is paramount that we not offend others, especially people who are disadvantaged. And we are on our best manners when we dine at an establishment where the meals cost more than $15. Most of the patrons were probably concerned that watching me climb the stairs would be offensive to me or would constitute an invasion of my privacy. Maybe they thought I hated being seen this way – that I already felt conspicuous enough, and their staring would only make me feel worse. Maybe they didn’t know what they thought, but it just felt wrong to look. Whatever the reason, most of these people either completely ignored me, or they only snuck a peek here and there. What a shame. What a missed opportunity! What a gross over-application of the duty to not offend.

The fact is that I absolutely love to have people watch me climb stairs. I’m an iBot exhibitionist. I get off by demonstrating how technologically advanced my iBot is, how talented my wife is, and how cool I am about the entire process. But these people had no way of knowing this. How could they?

Maybe the responsibility falls squarely on me to let the potential audience know that they are more than welcome to gawk at us, engage us in conversation about it, and applaud enthusiastically at the conclusion of the show. The question becomes, then, how do I convey this message.

One option is for me to clear my throat and in a very loud voice announce, “May I have your attention please? May I have your attention please? I am about to climb these stairs in a wheelchair. This is something you have probably never seen before, and may never see again. I invite you to put down your utensils, grab your drink, and adjust your seats so you have a comfortable view. In no way will I consider your watching to be inappropriate. Frankly, I would be slightly offended if you didn’t watch. This is very cool stuff. There will be a brief question-and-answer period after I get to the top of the stairs.”

In a perfect world, devoid of unnecessary human insecurities and burdensome social constructs, this would be appropriate behavior. But, frankly, I don’t know if I have the cahones. What if everyone ignored me and just continued dining? What if I came off as needy and insecure? What if, what if, what if? No, I think I’ll forgo the opportunity to be an agent for social change, and just keep doing my thing without drawing attention to myself. It’s just too risky.

Note: For those of you who have not seen the iBot in action, click here for a video of us in Jamaica last year, or watch below.

Wednesday, November 19, 2014

My Wheelchair Van Adventure

Sometimes things go smoothly with auto repairs. Other times, things just get weird.

In Maine, automobiles must pass an annual safety inspection. Our two-year-old wheelchair accessible van was months overdue, placing us at risk of being issued a ticket. On Saturday of last week, we finally scheduled an inspection.

The van failed due to excessive wear on its two front tires. The rear tires were acceptable. When we got home, I called a number of stores to compare prices. The last place I spoke with had a fair deal, $140 per tire for a high quality product. Kim stood beside me and whispered, “Ask them if that is the installed price.” I did. It was. I made an appointment for one o’clock the next day.

The pre-Christmas shopping crowd was out in force on this Sunday in mid-November. Parking spaces in this busy part of town were difficult to find. But our van has handicapped license plates, so we parked in the front row, like we always do, and walked into the tire store.

“My name is Mitch Sturgeon, and I have an appointment for my van.”

“Yes, I have your information right here. It looks like you’re all set. We are very busy today, so please give us a couple of hours.” We had plenty to do nearby, so the wait would not be a problem. For at least the fifth time in the previous couple of months, I went to the Verizon store and fondled a new iPhone 6 Plus. This time I succumbed to its charms. My new phone should arrive tomorrow.

When we returned to the tire store later in the afternoon, we were delighted to find that the work on our van was complete. We expected a bill of around $300. “That will be $748,” the mechanic said, cheerfully.

“I’m afraid you have the wrong bill. We just had two tires changed,” I responded, matching his cheerfulness. I wasn’t at all concerned. He had obviously picked up the bill for some other vehicle that had a brand-new engine installed. Common mistake.

“This is the right one. Changed four tires on a 2012 Dodge Grand Caravan…”

Smiles faded. Attitudes shifted.

“No, no, no. I explicitly told the gentleman I spoke with on the phone yesterday that I wanted to change the two front tires. Somebody screwed up,” I said.

And Kim added, “Even then, I thought these tires were supposed to be $140, installation included. How do you come up with $748?”

My wife is a very tolerant person. Give her slow service at a restaurant and she will teach you a hard lesson by cutting your tip from 20% to 18% (and then rounding up to the nearest dollar). But don’t even think about charging her full price for a beer she ordered five minutes before the end of happy hour. She studies every check to make sure we are never overcharged.

I instructed the mechanic, “I need you to put those two rear tires back on the van.”

“I can do that, but you should know that those rear tires are bald also.”

“All four tires are bald?”

“Yes, all four tires are bald.”

“Please show me these bald tires.”

“All four tires?”

“Yes, all four bald tires.”

When we eventually found the tires in the tire trash heap, it was clear to me that two of them had a lot of tread left and two didn’t. The mechanic disagreed. He tried to give me a lesson on how tires wear. I wasn’t buying it. We agreed to disagree. I again insisted that he put two tires back on. Kim again insisted that we address the issue of the extra charges over and above $140 to per tire, no matter how many tires we purchased.

And then we got the break we were waiting for.

“My manager has authorized me to work with you to figure out a way we can keep those four new tires on your automobile,” the mechanic said.

First, Kim went after all the extra charges – balancing, installing, valve stems, disposal fees, roadside assistance insurance for flat tires (I’m not kidding), and double time labor rates for Sunday installation (I think I’m kidding). I went after him for their negligence in installing two tires too many. We talked him down to $450 for the four tires. Kim and I decided this was preferable to putting a couple of two-year-old tires back on the van.

All was forgiven. Smiles returned. Friendly banter resumed.

I sometimes wonder if I benefit from the “cripple factor” in negotiations like these. I hope not, because I despise the idea that people may feel pity for me. I don’t think of myself pitiable. But if people do cut me some slack, it may a legitimate manifestation of karma (I don’t believe in the mystical, universal scorekeeper manifestation of karma).

As we walked out of the store toward our van, a most disturbing thought popped into my head. At first I tried to suppress it, but my conscience wouldn’t allow me to. Next, I tried to keep it to myself out of embarrassment, but it was too juicy not to share with Kim.

“You know, I called so many tire places yesterday…I’m not sure I ever told these guys I wanted two tires and not four.”

Kim stopped walking, turned toward me, and considered the implications of this potentially game changing admission. She responded with, “Don't feel guilty for one second. They still tried to screw us with all those extra charges and by telling us our rear tires were bald.”

That’s my girl.

Wednesday, November 12, 2014

Wheelchair Accessible Path Installed around Cobblestone Street in My Neighborhood

As I mentioned in my September post entitled Our Love Affair with Cobblestone Streets and Brick Sidewalks, for years there has been a cobblestone street impeding wheelchair access to the Casco Bay Bridge, which connects Portland and South Portland. I took up the cause in May 2013 with this video posted at

I spoke with the city manager and he liked my idea in principle, but wanted to make it a walkway through the adjacent Thomas Knight Park instead of over the top of the cobblestones. This wasn’t ideal, but it would still be a huge improvement.

In April of this year, the city manager informed me that funds had been allocated for this project, and it should be completed during the 2014 construction season. I announced this at

They cut it close – winter is almost here – but the ADA compliant path is now installed! I am going to enjoy my new access immensely next summer, as are all the other wheelchair users in the area.

The effort took 18 months from inception to completion, but it's extremely satisfying to see an idea like this come to fruition.

What did I learn in this process?

Here are my tips for campaigning on access issues where you live:

1. Speak up!

Keeping it to yourself or only complaining to friends does no good. Find out who gets things done in your community – a councilperson or city manager – and speak or write to them. Be friendly, and find something to compliment them on, and then present your case for improved access. Make it about the community, not just about you. Be as specific as possible. Offer to meet city officials in person, ideally at the site of the proposed accessibility project.

2. Follow through!

If city officials commit to considering your issue, follow up with them regularly. Be polite but firm in your tone. If you are not getting results, speak with other city officials, community organizers, or disabled advocacy groups. Don’t give up if one or two people are not cooperating.

3. Look at the details!

Be certain that the proposed solution is acceptable to you. Don’t assume because somebody says they can fix a problem that the solution is actually a good one. If possible, be present during construction. Again, persistence matters.

4. Celebrate your victory!

Write thank you letters to everyone involved. See if you can get the local newspaper to write a story. This will encourage city government and property owners to cooperate with requests like this in the future, and it will encourage other disabled people to speak up.

Note: You earn bonus points if you noticed two things about the last video. First, yes, I am in balance mode in my iBOT wheelchair. Second, yes, my ride down the new trail is displayed at double time. The iBOT doesn't go that fast in balance mode!

Wednesday, November 5, 2014

My MS Symptom of the Week – Spasticity

“I can feel it building…oh yes…please don’t stop…this is going to be so good…here it comes…hold on baby…OH MY GOD,” I thought to myself. Then I let it fly, “Achoo!!!”
“Gesundheit,” said Kim.
“Thank you,” I replied.
What? I can't believe you thought I was going there.

Everyone is familiar with that feeling leading up to a sneeze. The urge builds and builds, and the last thing you want to happen is for it to fizzle out before you detonate. The sneeze itself is such a relief. It’s like a scaled-down version of that thing that mommies and daddies do under the covers (the government blog sensors made me describe it that way).

Spasticity, my MS symptom of the week, feels like a sneeze as it builds and builds. And, like a sneeze, it feels so much better when I succumb to it.

“Mitch, what is spasticity?”

I’m so glad you asked.

The National Multiple Sclerosis Society describes it this way: “Spasticity refers to feelings of stiffness and a wide range of involuntary muscle spasms (sustained muscle contractions or sudden movements). It is one of the more common symptoms of MS.”

I would further describe my particular variety of spasticity this way. Think about how it feels when you wake up in the morning and have an urge to stretch, except that my stretch is very powerful (proving that the disease is in my nerves not my muscles). I get this spastic feeling frequently now, in both my legs and my arms.

I first experienced episodes of spasticity in the winter of 2003, only eighteen months after my diagnosis (and blogged about it here). I was walking around the streets of Nashville, Tennessee with a client. It was a cold night, and that triggered stiffness in my legs that even my companion could notice. It was almost like I was goose step marching. For the next ten years or so I experienced slowly increasing levels of spasticity, but it didn’t cause any difficulties in my life. It was just an interesting phenomena.

In the last six months or so, however, my spasticity has become much more frequent, and so much more intense, especially at night. It’s affecting my ability to sleep, and it’s doing another strange thing too. After so many years of transferring myself into and out of my wheelchair, bed, and toilet, I developed some sort of a strain in my left wrist. Now, I can’t use my left arm to help with transfers, so I’m not attempting any manual transfers at all. I’ve got an appointment scheduled with an orthopedic specialist, and we’ll see what he says. But the problem is that I have a lot of spasticity in my left arm, and I often put that left wrist through powerful, painful contortions. I think this spastic activity is preventing my wrist from healing. I’m even wearing a wrist brace at night, when the most spasticity occurs, but I still experience significant pain in my wrist.

For many years I’ve taken a moderate dose of a drug called baclofen, a muscle relaxant and the most commonly prescribed treatment for spasticity. I recently increased that dosage to a relatively high 80 mg per day. The problem is that these higher doses of baclofen cause overall muscle weakness and general fatigue, rather unpleasant side effects for someone with MS – a disease that already causes muscle weakness and general fatigue.

If I take much more baclofen I may need to go to the next level, which is to have a baclofen pump installed in my abdomen, with a catheter running around my waist into my spinal cord. This is a much more efficient delivery method for baclofen, without the nasty side effects. But I’m not excited about having a pump installed in my abdomen and having a permanent opening in my spinal cord. So I will put that off for as long as I can.

Spasticity – another wonderful symptom courtesy of my favorite disease, multiple sclerosis.

Tuesday, October 28, 2014

Political Advertising – Make It Stop!

I know this blog is supposed to be about leading a contented life as a disabled person. But there is something else I'd like to write about today, if you will indulge me.

Here in the United States we have a big election next week. It's what we call a midterm election, so we're not voting for President, but we are voting for just about every other possible position in federal, state, and local government.

I'm not here to advocate for any particular candidate or political party, but rather to publicly protest about how absurd the process has become. I understand that it's better than the alternative – not being able to choose your own representative government. But we've been doing this for over 200 years now, and it is getting worse, not better.

Specifically, I'm here to complain about political advertising on TV. As a disabled person who sits at home all day, I tend to watch a lot of television.
In the last couple of months, my television viewing experience, and more importantly my enthusiasm for next week's election, has been raped and pillaged by incessant political advertising. It would be one thing if the commercials were informative, well done, or even creative. But they are not. They are absolutely mind-numbing.

In response to this deluge I conducted a scientific study of the candidates’ advertising. My extensive data analysis indicates that if a negative claim is made against an opponent, there is a 99% chance that said claim is at best distorted and at worst completely fabricated. The data further reveals that if a positive claim is made about a candidate, there is an 80% chance that said claim is at best distorted and at worst completely fabricated.

I have scientifically established, therefore, that negative advertising is less informative than positive advertising, and that positive advertising is far less informative than no advertising at all. Because of this, as I finalize my voting decisions, I will award “bonus points” to the candidates who inundated me with the fewest commercials (but I’ll give more bonus points for lack of negative commercials, as they are the worst kind).

OK, maybe I didn't really conduct a study, but I bet my percentages are pretty damn close to the truth.

I can think of only one good reason why candidates spend so much money on television advertising. It must work. I would be ashamed of myself if I let the content of these commercials influence my vote in any way (other than my bonus point system). We should listen to debates, meet with the candidates, hash things out with our friends and neighbors, but we can’t let these fraudulent commercials sway us! Since many of us apparently are duped by this disinformation, then I must reluctantly conclude that we are a weak-minded society, prone to manipulation. Shame on us.

But it doesn’t have to be this way.

I'll make my informed voting decisions based on how I feel about the candidates’ ability to represent my family’s interests, with adjustments made for how I was treated as a consumer of their advertising.  The only way we can stop the insanity is to demonstrate to the next round of political candidates that mudslinging and tacky advertisements will not produce the desired outcome.  All television commercials of the current style, even the positive ones, are a waste of our time and an insult to our intelligence.  Make it stop!

Can I get an amen?

Tuesday, October 21, 2014

The Top Ten Reasons I Want to End MS

When I checked my email this morning I saw a note from the National Multiple Sclerosis Society. They asked the question, "Why do you want to end MS?" Their goal is to have 20,000 people answer by October 31. Here is the link.

This is the kind of rah rah mentality that usually turns me off. It is blatant cheerleading. But I had no other blog post idea this week, so I thought I would give you my top 10 reasons.

Reason #10:
If we end MS, then we can put people like me back to work so we are financial contributors to society instead of financial burdens, and so that we can once again feel the satisfaction that comes with a job and a career. This time around I don’t want to be an engineer. I’m thinking astronaut or Rom Com movie star.

Reason #9:
If we end MS, then I can change the name of my blog from enjoying the ride to enjoying the mountain climbing. Who am I kidding? That was never me. It would be more like enjoying standing up to pee.  

Reason #8:
If we end MS, then we can make organizations like the National Multiple Sclerosis Society (bless their hearts), and silly campaigns like this one (and I mean that in the nicest way) obsolete.

Reason #7:
If we end MS, then we can reallocate the enormous sum of money spent on research and treatment. This money can instead go toward other diseases. But I would like a little of it to go to those of us who were cured of multiple sclerosis so we can vacation in the Caribbean – all of us at the same time and on the same island. What a party that would be!

Reason #6:
If we end MS, then we can answer, once and for all, the question of what was its root cause. I hope it’s not something too embarrassing though, like you catch MS from picking your nose or excessive masturbation.

Reason #5:
If we end MS, then I can reclaim my initials from this damn disease.

2011 08 202

Reason #4:
If we end MS, then those people who are cured will save money on wheelchairs, wheelchair vans, ramps, grab bars, home modifications, and a million other things. However, our costs for footwear will increase dramatically (a pair of shoes typically lasts me 5 to 7 years now).

Reason #3:
If we end MS, then people like me can get our lives back.

Reason #2:
If we end MS, then people like Kim can have the respite that they deserve. They won’t have to be caregivers in addition to all their other roles.

And my #1 reason is:
If we end MS, then our children and our children’s children will not be cut down in their prime. We will stand tall and say, “No person will never suffer this way again.”

Why do you want to end MS?

Tuesday, October 14, 2014

Adventures in Public Transportation #3

I posted #1 in this series in 2011. It was as about a transportation service for disabled people, called RTP. It sucks, and I haven’t used it since.

I posted #2 in this series in 2012. It was about my initial ride on the South Portland Public Bus system with Kim, and my first solo ride shortly thereafter. Big effing deal. What a rookie I was.

Fast-forward to 2014, where I am a seasoned city bus rider. That’s right. I ride the bus once or twice per week on average. My most common destination is the physical therapy clinic near the Maine Mall. I also go to the mall or to downtown Portland on occasion. My frequent bus travel started in the spring of this year, so I’m uncertain how I’ll like this mode of transportation in the middle of the winter. It’s going to be freaking cold.

My PT appointments are scheduled for 3:30 PM on Tuesdays and Thursdays. I leave my house at about 2:39 PM for the 2:40 bus. We have a new, enclosed transportation hub one block from my house, and it has pushbutton operated doors. The bus is anywhere between five minutes and twenty-five minutes late. So I sit in the transportation hub and read for a few minutes.

Any number of buses may pull up to the curb while I’m waiting, but the one I want is number 24B. When it approaches, I push the door-open button, exit the building, and situate myself squarely in line with the front door of the bus. This lets the driver know that I would like to board.

But before I can do that, the bus driver has to fold up one of the two bench seats to expose one of the two wheelchair stations on the bus. Usually that means evicting passengers who sat there at their own risk (there is a big sign indicating that they may have to move for wheelchair users). I then board the bus via a ramp or lift, endure the disapproving looks from the disenfranchised bench sitters, squeeze down through the aisle until I get to my spot, do a 180 degrees turn so that I am facing forward instead of backward, and then situate myself in the designated wheelchair spot. I perform this maneuver deftly, even elegantly, so I am surprised and disappointed that I’ve yet to receive any applause. Sometimes I take a bow nonetheless.

There are four tiedown straps and hooks on the floor. I soon learned that the cool wheelchair people do not ask to be secured. That process holds up the entire bus for a minute or two. I am now one of the cool wheelchair people. I suppose I’m not being absolutely safe, but neither do I worry during a bus ride where nobody wears a seatbelt, and several people on the bus are standing.

Once I am in position, the bus driver closes the door, folds up the ramp or the lift, and pulls away from the transportation hub.

I’m like a small child, in that once I get on this bus I have trouble keeping my eyes open. I typically recline in my wheelchair twenty degrees or so, elevate my feet a little, close my eyes, and rest. I only fell asleep once, and I missed my stop, so I don’t do that anymore. I’m not a pretty sight for people getting on or off the bus. They probably look at me and wonder just how awful my life must be, to have such a big wheelchair in such a reclined position – and the poor bastard can’t even stay awake! But I don’t care. I'm a hell of a lot more comfortable than they are.

When the bus approaches my stop I’m supposed to pull on a cord to alert the driver, but I have trouble with that. So, when I board the bus I tell the driver, “I’ll be getting off at Kaplan University.” So far they haven’t forgotten me. When we approach my stop, which is nothing more than a sign on the side of the street, the bus pulls over and we reverse the boarding process. I am dumped on the sidewalk of a very busy road.

I travel a couple hundred yards to Saco Bay Physical Therapy, where I push the door-open button, and I am at my destination. If things go well, I’m usually about ten minutes early for my appointment, and the therapists accommodate me. If things go poorly I might be ten minutes late, and again, the therapists accommodate me.

Kim gets out of work in time to pick me up at 4:30 PM. I’ve never taken the bus home because I don’t like the idea of sitting out in the elements by the side of the road for five minutes to twenty-five minutes waiting for the bus to pick me up. When I get into our wheelchair van Kim has usually been waiting for a few minutes, so she is typing away furiously on her smart phone. One of us will ask, "How was your day?" Then the other person will reciprocate. Next, the conversation inevitably goes toward, “So, what are we going to do for dinner tonight?” The last element of our meet and greet is to bitch and complain about the traffic or the idiocy of a specific driver. Once these compulsory requirements are met, we are free to discuss whatever we wish. Common topics are quantum mechanics, current events in the middle east, and our favorite political advertisements.

Tuesday, October 7, 2014

Sleeping Apart

We never slept apart out of anger. The only time Kim tried was a couple years into our marriage, but it didn’t work. We had a big fight because I was being an asshole. After going out with the boys, I stumbled home and found her on the couch with a blanket and pillow. I said, “Okay, let’s go to bed.”

“I’m already in bed,” she replied.

I went upstairs, grabbed my own blanket and pillow, and came back downstairs. I laid on the floor beside the couch and didn’t say a word. The gesture worked. We reconciled and went upstairs together.

Until I stopped working in 2009, I traveled between five and fifty nights each year for business. I typically spent between two and a dozen nights away from home each November for deer hunting. Once in a while Kim attended an out of town teachers’ conference. Sleeping apart was common and not particularly stressful for us.

This weekend we had friends over, and as I often do, I set the computer up to randomly scroll through our collection of photographs. I do this because once in a while somebody will notice an interesting one, and it will spark conversation. The picture on the right side of this post, depicting Kim in Chicago, popped up on the screen. Kim said, “That was three and a half years ago, and it was the last time Mitch and I slept apart.”

I’ve grown more dependent on Kim for assistance getting into bed, getting out of bed, and occasionally in the middle of the night. This has made it almost impossible for her to get away from me, or me away from her, for a single night.

Now that I have the overhead lift system, theoretically it is possible, but I would still be nervous. Maybe we’ll give it a try, or maybe we’ll play it safe. I’ll certainly let you know if we become daring enough.

Over the years I’ve seen interviews of sweet old couples who proudly proclaim, “We’ve never slept apart in fifty (or sixty or seventy) years.” I admit that I looked down on those people for leading unsophisticated lives. Yet here we are…

Tuesday, September 30, 2014

What I Remember and What I Don’t

I can remember my childhood telephone number: 207-794-8247
But I can’t remember the current cell phone number for either of my children.

I do remember where I was when the planes crashed on 9/11 and when I heard about the Space Shuttle Challenger explosion.
However, I don’t remember President Kennedy being shot seven weeks after I was born.

I remember a lot of things from my college graduation ceremony.
But I don’t remember finding out that I was accepted into college.

I can’t shake the image of Billy Buckner letting a routine ground ball go between his legs in what should have been the final out of the 1986 World Series, or whose house I watched it at in Cleveland, Ohio, or the premature, tear jerking victory speech I made just before it happened.
Yet I don’t have an image in my mind of my daughter taking her first steps.

I do remember every room in all six houses that we’ve ever owned.
I just can’t remember where we keep the broom in this house.

I remember turning fifty. It was a blast.
I don’t remember turning twenty-one. I assume I got very drunk.

I vividly recall the births of both of my children.
But I can’t remember finding out Kim was pregnant, either time.

I have at least partial memories of when my brother became temporarily blind (I was two and a half years old) and when my father told me about my mother’s accident (five years, eleven months old).
But I can’t remember a joke, not a single joke. And I can’t remember the name of that guy, you know, that guy with the thing…

I remember being diagnosed with multiple sclerosis.
But I cannot remember the last time I walked. I haven’t forgotten what it feels like, though, because I still walk in my dreams.

What can you remember? What can’t you?

Tuesday, September 23, 2014

The Difficulty I have Accepting Compliments

I receive so much positive feedback for my blog posts. I am referred to as inspirational, or courageous, or any number of similar accolades.

Of course this buoys my mood, and it motivates me to keep writing. We humans are programmed to welcome, even crave compliments. So please allow me to say a big THANK YOU to all my readers for your support! It means a great deal to me.

But I feel a little bit guilty. I inherited my resilience from my mother. It was an advantage of birth similar to when people inherit intelligence, athleticism, or good looks. In addition to my genetic advantages, I am fortunate in so many other ways. Here are just a few:
I’m a white male in America (three advantages in one)
I have an incredibly supportive wife, family, and friends (apparently advantages come in threes)
I have a certain amount of financial security (at least until the next market crash)
I don’t suffer from depression (am I crazy not to?)
I suppose I have been a good steward of these gifts, and that’s something. I’ve made the effort to share my experiences. I could have kept this all to myself, but I didn’t. I hereby accept any and all praise for being forthright.

But there are so many people who wake up every day and battle against incredible odds, and they don’t get the recognition that I get. I don’t believe I’m any more worthy of this praise than people who are having a rougher time than me, people who don’t enjoy the advantages I do, or people who can’t describe their lives in a positive and inspirational way because they are miserable.

I’d like to giftwrap the complement “you are such an inspiration” that I received in an email last week and deliver it to the person with MS who gives her best every day even though her husband just left her because he “can’t take it anymore.” I’d like to regift the “you’re a remarkable person” comment that I received at my blog and send it off to the cancer patient who is trying to make the critical decision about whether or not to continue treatment.

Since these exchanges are not possible, here’s the deal I propose. I’ll continue to welcome your compliments with appreciation and humility, and I’ll maintain my positive message. In return, we must all recognize those disadvantaged people who are not able to live a contented life – those people who are scratching and clawing just to survive. To me, those are the real, silent heroes.

Now, here is the question of the day for all of you armchair psychiatrists. Did I write this post for purely altruistic reasons, or am I subconsciously craving even more positive feedback along the lines of “No, Mitch, you really do deserve to be admired. Don’t sell yourself short.”

I wish I knew the answer.

Tuesday, September 16, 2014

I Have Difficulty Eating – But I’m Not Going to Starve

In the last year I’ve experienced increased difficulty getting food from my plate to my mouth. In an ironic twist, my skills at getting food on my shirt, on my pants, or on the floor have greatly improved.

We’ve been implementing new eating strategies for a while. I have plates with high sides so that I can push my food up against the edge in order to get it on my utensil. Below are two examples.

I eat one-handed. My left hand is not involved in this process at all, as it doesn’t have any value to add. So, because I push food up against the side of the plate, I need something to keep my meal from sliding across the table. We’ve purchased several sticky items that, when placed between the plate and the table, help keep things stationary. See the two examples below.

We have also modified my utensils. I have no need for a knife. I don’t have the strength or dexterity to cut food. I’m increasingly ignoring my fork, as spearing food has become more difficult over time, even lettuce in a salad. I mostly use a soup spoon for everything because Kim has already cut my food for me. In order to help with my grip on utensils, we’ve added foam to each of the handles. But even then, I had difficulty manipulating the utensils properly, so I asked my friend Michael to bend my spoons and forks in a couple different directions. Now, they work much better. See below.

It’s difficult for me to lift bottles, cups, or glasses to my mouth, so I tend to use straws these days. We found some reusable straws that we can bend into the exact configuration that we want. But I must admit that neither wine nor beer taste as good through a straw. See photo below.

As I stated in the first paragraph, I tend to spill a lot of food on my chest, belly, and lap. So we finally broke down and bought two adult bibs. They have saved a lot of damage to my clothes. I use them at home, but I haven’t got the nerve up to use them at a restaurant yet. See below.

But even with all these accommodations, I know that in the not-too-distant future I will no longer be able to feed myself at all. Already, Kim feeds me once in a while, depending on the food and on my level of hand and arm fatigue.

From a practical standpoint, there are worse things that can happen to me (and probably will). I’m not going to starve. People will always be around to feed me. But from a psychological standpoint, for both Kim and me, this is a tough one. The problem won’t be private dining, but rather group dining. I hate feeling pitied, and I know there will be a heavy dose of that sentiment aimed at me when I’m no longer able to feed myself.

But it doesn’t have to be that way. We have no plans to stop inviting people over or to curtail our dining out. I intend to sit back and enjoy my meals with guests, just like I always have. I’ll make conversation. I’ll smile and laugh. I’ll bore my companions with long stories and off-the-wall opinions. In the end, this is just another adjustment in a long line of adjustments that Kim and I will have to make.

It’s not the end of the world – not even close.

Tuesday, September 9, 2014

Our Love Affair with Cobblestone Streets and Brick Sidewalks

People are moving back to the cities. After decades of migrating away from one another, and building on huge, wooded house lots that isolated us from our neighbors, people are living in close proximity again. It’s a wonderful thing to see. Cities like Portland and South Portland, Maine are experiencing revitalizations.

As part of this rebirth, instead of scorning the old, industrial and warehouse districts, developers are reinventing them as condominiums, restaurants, and office space. And how about the sidewalks and the streets? What are we doing there?

City governments love to preserve cobblestone streets, for sentimental reasons. They remind us of the history of our great cities – the establishment of commerce, government, and prosperity in a region. We also love the old brick sidewalks. It’s feels significant to tread on the very same bricks that our forbearers forged and laid so long ago. Also, cobblestone streets and brick sidewalks fit well with the aesthetics of old brick buildings. They complement one another.

Ah, nostalgia. What could be wrong with it? Well, there’s a lot wrong with it if you are a disabled person.

The old brick sidewalks that are so faithfully preserved are usually uneven and sporadically damaged. The curb cuts and the transitions are typically steep and rough. Old brick sidewalks are difficult for people to navigate using wheelchairs, scooters, walkers, canes, and crutches. They impose a danger to the elderly and others who have difficulty walking.

Cobblestone streets, in and of themselves, are not so much of a problem, as long as they have an accessible sidewalk and flat street crossings. But that is rarely the case.

Our urban planners have a decision to make. Is it more important to preserve the past and have a consistent aesthetic in these revitalized downtown areas, or is it more important to make our cities accessible to everyone. Too often our city leaders are choosing to ignore the needs of their disabled citizens, and serve other interests instead. As a disabled person, and as an advocate for other disabled people, I find this troubling.

Disclaimer time – I manage to deal with the brick sidewalks and cobblestone streets. I am borderline fearless with my wheelchairs. I enjoy the downtown districts in my area despite the inconveniences. But I worry about other disabled people who choose to stay home rather than deal with our 19th century streets and sidewalks.

What do I want? I want our cities to replace old brick sidewalks with modern brick or concrete sidewalks, with ADA curb cuts. I want our cities to either replace cobblestone streets with paved streets, or ensure that there are smooth sidewalks and walkways for street crossings.

How are Portland and South Portland doing? I’m happy to report that in my South Portland neighborhood the city completed a major revitalization a couple of years ago resulting in new street tops that replaced aging pavement; new, wider concrete sidewalks that replaced crumbling brick sidewalks; lovely streetlamps that replaced outdated and mostly nonfunctioning streetlights; and updated utilities underneath the streets. I couldn’t be more pleased with these improvements, especially the sidewalks.

In South Portland there is still one cobblestone pathway that pedestrians must walk down, for approximately 100 yards, to utilize Thomas Knight Park or to walk across the Casco Bay Bridge to Portland. I’ve been working with the city for over a year on options, and it appears that they are ready to move forward with a paved pathway through Thomas Knight Park. It should be installed before winter.

Here is a very short video I posted in May 2013 at an MS website called My Counterpane, which should give you an idea of why cobblestone streets don't work with wheelchairs (if you are receiving this as an email blog post, you'll have to go to the blog website to see the video).

But in neighboring Portland, the situation is terrible. Old, brick sidewalks are in disrepair throughout the commercial district. Curb cuts and other transitions are downright dangerous. Cobblestone streets are sprinkled throughout the Old Port, and many times disabled people have no choice but to hobble over them if they wish to get from one part of the district to another.

When cities give such high standing to old brick sidewalks and cobblestone streets, they are choosing the past over the present. They are choosing nostalgia over accessibility. They are choosing form over function. Worst of all, they are choosing things over people.

How are your cities handling old brick sidewalks and cobblestone streets?

Wednesday, September 3, 2014

Anything is Possible if You Just Set Your Mind to It

A month ago I debunked an old adage – Everything Happens for a Reason. Now I'm at it again. This month I take aim at Anything is Possible if You Just Set Your Mind to It. A greater line of bullshit has never been uttered.

Why? Because we are only in control of a small fraction of what goes on around us. There's an element of randomness and luck to the universe.

Let's not delude ourselves into thinking that if we do everything right then the only possible outcome, or even the most likely outcome, is the attainment of our goals. Similarly, let's recognize that not every accomplished person deserves their standing, and therefore we shouldn't necessarily try to emulate the actions of successful people.

If I don't believe that anything is possible, then what do I believe? Glad you asked. I believe that it's a good practice to set lofty goals, but it's the journey that is important, not so much the success or failure of attaining the goal. Working hard, being part of a team, contributing to your own success and the success of others, learning, laughing, loving - these are the experiences that must be savored, the Ride that must be Enjoyed. If you focus only on the prize at the end, you miss everything important along the way.

My dream is that one day a wise and successful athlete, businessperson, or entertainer will say the following in their acceptance speech:

     "I was capable and committed. I persevered through adversity. Look what I accomplished! If you are capable and committed, and you persevere through adversity, you may also become as successful as I am. But you probably won't, through no fault of your own. I was extremely lucky, and the likelihood that you will be just as lucky is, frankly, minuscule." 

This speech may not strike you as inspirational, but it is truthful. I am more inspired these days by truth than I am by bullshit, and the older I get the better I become at recognizing the difference between the two.

Tuesday, August 26, 2014

A Firm Handshake

To say that I am a fan of the firm handshake doesn’t begin to do it justice. I don’t only enjoy or prefer a firm handshake. To me, it is essential. A wimpy handshake leaves me wholly unsatisfied with the interaction. Why bother to shake my hand if you can’t put a little effort into it? If you don’t care about delivering a firm handshake, then what else don’t you care about? Truth? Justice? The American way?

It doesn’t have to be overpowering – in fact that’s an entirely different problem. But it can’t be mushy or weak. And I don’t forgive a limp handshake from a woman any more than I do from a man.

Recently, my high regard for the firm handshake has become a problem, because I can no longer deliver one. I can’t uncurl my fingers far enough – I can’t make my hand sufficiently flat – to couple with your hand in the proper way. I often give you only a few of my fingers and no hand at all. If I do manage to seat my hand into yours, which I still accomplish once in a while, then you will find my grip to be underwhelming – generally mushy and soft.

I know you don’t blame me. Obviously, when someone is sitting in a wheelchair they are forgiven if they’re unable to perform certain tasks. What bothers me is that I enjoy the brief connection a handshake provides, and I miss that. It demonstrates friendliness and good manners. It clearly marks the opening or closing of an interaction. So many times, especially in my professional career, a degree of animosity and distrust developed over time with relationships that consisted of phone calls and emails only. But once we were together, once we shook hands, the distrust often dissolved and positive relations ensued.

Of course, the other reason that my recent inability to perform a proper handshake bothers me is because it marks continued disease progression. My right hand is my last decent appendage, and it is continuing to weaken.

So, if I cannot complete a handshake, what can I do instead? I am able to perform a fist bump. But they are a bit juvenile and informal, so they don’t suit every social situation. Additionally, I expect that fist bumps are merely a fad and will lose popularity like the high five, for example.

Hugs work too, but they are too intimate for every relationship or every situation. If you do come in for the hug, please approach from my left side. If you approach from the right side you may hit my joystick and send me flying. Yes, that has happened.

And of course, if you don’t mind a mushy, three finger handshake, then I’m still good for that too. The bottom line is that if we’re in a group and there are greetings going around, don’t avoid me because you’re not sure exactly how to proceed. Come on over and we’ll figure out something together.

Thursday, August 21, 2014

Working It Out

People with MS find it particularly challenging to remain productive, and employed, in the workforce. The video below, called "Working it Out," was produced by a UK based group called It's well done, plus, as a bonus, everyone in the video has an awesome British accent. See below (or click here).

Tuesday, August 19, 2014

Treatment Holiday or Something Else?

2014 08 200The photo at the right was taken on Sunday. Kim and I are on the cliff walk near Portland Headlight, about a five minute drive from our house.

Relapsing remitting MS patients usually take one of the FDA approved disease modifying treatments. But these treatments come with varying degrees of side effects and risks. As such, patients sometimes like to enjoy short periods when they don't take any disease modifying drugs at all. This is called a treatment holiday. It’s a little gift that they give to themselves for a few weeks or even months. But MS is a persistent disease, so it’s best to not leave it untreated for very long.

There are no FDA approved treatments for primary progressive multiple sclerosis, but that doesn’t mean I don’t try stuff anyway. Most recently I used intrathecal methotrexate for two years, but my last infusion was in February. Since that time I’ve not undergone any MS treatments. I don’t refer to this a treatment holiday, however. Holidays, or vacations, are for relatively short periods of time and have a defined end date. I’ve been without treatment for my MS for six months and counting, and I see no end in sight. I’m more inclined to call this a treatment drought.

This isn’t the only time I’ve been in a drought. My first one lasted a year and a half, back in 2004 and 2005. It happened again for about a year in 2009 and 2010. And there was nothing going on for parts of 2011 and 2012.

The goal with any treatment for PPMS is to slow down or stop the disease progression. I feel that this has only happened twice since my diagnosis in 2001 (I use the word feel because, unfortunately, assessment of disease progression is somewhat subjective for PPMS). The first time was during year one of the two-plus year Rituxan trial/debacle. The second time was during year one of my two-year intrathecal methotrexate treatment. I’m inclined to give credit to each of these drugs for my temporary plateaus, and then scratch my head as to why the treatments stopped working after a year. Of course, the other possibility is that my disease has its own natural ebb and flow, and I would have plateaued during those time periods even if I hadn’t been on those treatments. I don’t think so, but I can’t be sure.

As my friend Joe pointed out recently, there are psychological benefits associated with being on a treatment, even if its effectiveness is unclear. At least we are trying. At least there’s a chance that something amazing could happen. I wouldn’t mind a treatment holiday now and then, but these long periods of time between therapies aren’t good for me, emotionally or physically.

It’s like I am wandering in the desert. I ask myself, “When will it rain again? When will this drought end?”

Wednesday, August 13, 2014

The End of Summer

When Kim chose to become a teacher, shortly after we married, it seemed like a nice fit for our family plans. I would work the long hours and make the big bucks as a chemical engineer. She, on the other hand, would have a personally rewarding, if grossly underpaid career. Because of the favorable schedule of a teacher, Kim would still have ample time to spend with our future children. She was the nurturing type anyway, not me.

But now, with the children grown and with me in premature retirement due to MS, we look at her profession differently. Because she went on and earned Master’s and post-Master’s degrees, and she works two extra weeks per year due to her guidance counselor responsibilities, and she is employed by the public school district in the most affluent community in Maine, and she has 25 years of teaching under her belt, she is no longer grossly underpaid. Yet, she still has that favorable teacher schedule with every conceivable holiday off, ample vacations during the school year, and the Holy Grail of the teaching profession – summers off.

Quick clarification before I offend any teachers – by no means am I implying that teaching is easy or that teachers don’t deserve their time off. Furthermore, Kim, as well as most teachers I know, spends a lot of time at home working on school items. Still, it’s a sweet schedule.

We so enjoy her seven week summer vacation. It’s not all lying on the beach and sipping margaritas for Kim. She takes on home projects, sometimes well beyond her skill level, and they always turn out well. But in between the projects we do take in the wonders of summer on the southern Maine coast. We go to parks, outdoor concerts, restaurant decks with live music, July 4th fireworks, friends’ camps at the lake… I could go on.

For example, just last night we decided, spur of the moment, to go get a beer and listen to a local band at one of our beloved summer spots – Portland Lobster Company. I was that close to backing out on Kim. I’m so glad I didn’t. The band consists of three men, and they call themselves The Still. But on this night they had a female lead singer who was a friend of the band visiting from the West Coast, and this girl had pipes! Word quickly got around town and the place was packed. Towards the end of the evening an older couple, you know, about our age, sat down beside us. Of course Kim struck up a conversation and found out they were vacationing in Portland from the Washington, DC area. The husband sat an old wooden box on the table. Kim whispered to me, “What do you think is in the box?”

I guessed, “Maybe it’s a humidor. There is a cigar store just across the street.”

He opened the hinged cover in such a way that we couldn’t see the contents, and pulled something out that fit in the palm of his hand. His wife said, “Go ahead. Ask the band if you can play a song with them.”

Then we saw what he had – a harmonica. He opened up his box and showed us a large collection of harmonicas, one for every key, he explained. He seemed reluctant to impose himself on the band, but Kim joined his wife in egging him on. Finally, he approached the band leader at the end of a song and asked if he could play. The band leader agreed and set him up with a microphone. The song was Johnny Cash’s Folsom Prison Blues, one of my favorites. I can personally identify with most of the lyrics.
I hear the train a comin'
It's rolling round the bend
And I ain't seen the sunshine since I don't know when…
I'm stuck in Folsom prison, and time keeps draggin' on
But that train keeps a rollin' on down to San Antone..
Our new friend’s wife, a very conservative looking woman, whispered to us, “He plays a kick ass harmonica.” Damn straight.

At first our new friend performed in a laid-back and cautious manner. But as the song wore on, he gained confidence in himself, and won over the audience and the other band members. At one point the other musicians fell into the background and our friend stepped forward. In all my life I never saw anyone play the harmonica like he did. His hands were flying around in a blur. His cheeks were flapping in and out more quickly than seemed humanly possible. His whole body leaned into it and produced a harmonica solo for the ages.
When I was just a baby my mama told me. Son,
Always be a good boy, don't ever play with guns.
But I shot a man in Reno just to watch him die
When I hear that whistle blowing, I hang my head and cry…
The crowd went crazy with applause during his performance and at the end of the song. He then returned to his seat, carefully placed the harmonica back in the box, and finished his beer with us.

These are the kinds of things you don’t see if you always stay home on Tuesday nights, like we do for most of the year.

The only drawback to Kim’s summer vacation is that it always ends. That’s what we’re facing right now. Tomorrow, she goes back to work. But that’s okay, because somebody’s gotta bring home the bacon in this family. Plus, I still need to watch House of Cards on Netflix, and Kim has no interest in that.

I bet there's rich folks eating in a fancy dining car
They're probably drinkin' coffee and smoking big cigars.
Well I know I had it coming, I know I can't be free
But those people keep a movin'
And that's what tortures me...

Well if they freed me from this prison,
If that railroad train was mine
I bet I'd move it on a little farther down the line
Far from Folsom prison, that's where I want to stay
And I'd let that lonesome whistle blow my blues away.....