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.

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.

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.

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.

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.

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, www.iConquerMS.org, 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.