Say Hello to Kim

In February I had annual checkups with my primary care physician and my neurologist, two doctors I’ve seen for almost fifteen years now. Both are wonderful individuals who I enjoy spending time with. It’s a good thing I do, because there’s very little to discuss on the medical front these days. I'm not finding fault with them. Such is the state of affairs with primary progressive multiple sclerosis, a disease that has no treatments.

For example, my primary care physician exam went something like this:

“How is your MS doing? Everything fairly stable?”

“I wouldn’t say that. I’m still getting worse, but at about the same rate as always.”

“Have you and your neurologist come up with anything new to try?”

“No. Just treating the symptoms.”

“Do you have any other health issues you’d like to discuss?”

“Not really.”

“Well, your bloodwork and your vitals all look good. I’ll go ahead and refill your prescriptions for another year. How is the family?”

I filled her in on my family, asked about hers, and she updated me. She then gave me a brief physical exam (take some deep breaths, stick out your tongue and say “ah”, etc.).

“Is there anything else, Mitch?”

“Oh yeah, I almost forgot. I now have my medical marijuana card. I’m experimenting mostly with insomnia at this point, but I haven’t had much luck.”

“I understand they have lots of different strains, so maybe you can go back and find something that does work for you.”

“That’s the plan.”

“When should I schedule you in next? We did nine months this time.”

“Let's schedule me out for one year from now?”

“A year? Really?”

“Yeah, I’ll be in to see you before that if anything comes up. Plus, I have an entire team at my disposal – a neurologist, a urologist, an occupational therapist, and a physical therapist,” I explained, and we both laughed.

“Okay. It was great catching up with you. Say hello to Kim.”

A couple of weeks later I had a routine checkup with my neurologist. It went something like this:

“So how is everything going?”

“Still getting worse, but at about the same pace. I really notice the deterioration at mealtime. It’s becoming harder and harder to get food from my plate to my mouth.”

“Mitch, I know you do as much or more research as I do on MS treatments. Anything out there look promising to you?”

“Not in the short term. Lots of activity on the stem cell front, but it seems to be focused on patients with active lesions, which I don’t have. Do you seen anything interesting?”

“Afraid not. Only for relapsing remitting MS. How is your spasticity?” (This term refers to stiffness and spasms, mostly in my legs.)

“Well, I’m up to 80 milligrams a day of baclofen.”

“At some point, down the road, you may need a baclofen pump to get enough medicine into your system.”

“Yup. I see one in my future.”

“Okay, anything else to discuss?”

“One more thing. I am now a licensed medical marijuana user. I’m trying it out for insomnia first, but without much luck. I’m still toying with it though.”

“Good for you. As you know, I’m not a big fan of the pharmaceutical sleep aids. So, how’s the family?”

I filled him in on my family, asked about his, and he updated me.

“How about I schedule you in again in nine months?”

“Sounds good.”

“Say hello to Kim.”

I’m Writing a Book

It’s the secret project I referred to in a previous blog post.

In fact, I’ve been writing this book for over a year now, and I still have a long way to go. I’m almost afraid to finish because I doubt I’ll ever find another project I’m as passionate about as this one.

I completed my first draft in December. The process of filling up blank pages is over, and the work of revising – of crafting and molding the story into something readers will enjoy – has begun.

It’s no small feat to transform an engineer into a writer, so I’ve not been shy about getting help. I’ve solicited advice from amateur and professional writers. I’ve taken online courses and attended writing workshops. There are so many blogs and magazines and books about the art of writing books, and I’ve read a lot of them. Perhaps most importantly, I spend time with a talented group of authors at the Portland Writers Group, where we critique one another’s material.

One day I’ll have to let this book leave the nest and see if it can fly. If no publishing houses show an interest, I’ll gladly self-publish. I dream of having a New York Times bestseller, but I’ll be thrilled if just a few people read the book and tell me it was worth their time, and it helped them in some way.

What’s the book about? I’m glad you asked. Here’s a brief synopsis:

Paralysis can strike without warning – one moment you’re a dynamic and independent person and the next, a quadriplegic. That’s what happened to my late mother when she crushed her cervical spinal cord at the age of 35. But sometimes paralysis chips away at your movements, a tiny bit every day, until you become locked inside the useless shell of a body. That’s what has been happening to me since the age of 38, when an aggressive form of MS began to ravage my cervical spinal cord – at an eerily similar location to my mother’s injury. Although we followed different paths, we ended up at the same place. 

In a straightforward, irreverent, and hopefully inspirational manner, I tell the story of a mother and son’s mutual suffering and shared resilience. I revisit a childhood growing up with my extraordinary mother then take the reader on a journey through more than a decade of my adult life spent battling primary progressive MS. 

My mother prepared me for challenges we could never have imagined I would face. And through the writing process I grew closer to her by finding new meaning in the legacy she left behind.

What’s the title of the book? I have no idea. I thought about using the title of this blog, something like:

Enjoying the Ride: the Story of…

But now I’m not so sure. Maybe I need a title that is fresh and new. Either way, it must convey the theme that I presented in the synopsis, above.

If you have any title ideas, please send them to me at email@enjoyingtheride.com. How many times in your life do you get your name listed in the acknowledgments of a published book, with the potential for circulation in the triple digits? And for the person who provides the best title idea, Kim and I will treat you to a lobster dinner on our patio this summer, if you can make it to South Portland, Maine. If not, I’ll ship you some lobsters.

As you know, my blog posts draw heavily from my personal experiences, and working on this book for an hour or two a day has become a huge part of my life. I’d like to occasionally share the journey with you instead of hiding it from you.

And I’m serious about the book title. I’ve got nothing.

Note, 5 hours after posting: I'm getting a lot of support for the title Enjoying the Ride, but I would still need a subtitle, Enjoying the Ride: something

If I Was Given One Healthy Day…

…what would I do with it?

Imagine somebody invented a pill which restores the health of a person with MS to the point just before their symptoms began to show. However, the effect of the pill lasts only 24 hours, and then the person returns to their previous condition. This pill only works the first time. If you take another one, nothing happens.

How would you spend that day?

I would climb into our 20 foot aluminum canoe on a crisp November morning, with my Browning 30.06 rifle in hand, and my brothers by my side. We would motor up Passadumkeag Stream, and they would drop me off across from Big Island. I’d creep along the ancient game path which runs parallel to the meadow. If I didn’t see a deer or even a track, I would still be enveloped by the memories of so many hunting experiences I had there in my younger, healthier days.

Or I might borrow one of my friends’ snowmobiles and set out from the parking lot in Rockwood, on the western shore of Moosehead Lake. Kim, Amy, Zach, and all my snowmobiling buddies would join me. We would eat lunch at Pittston Farms and stop at Raymond’s store in Northeast Carry for gas. We would pose for pictures in front of the cliffs of Mount Kineo before crossing the lake late in the day and completing the ride exhausted, cold, and deeply satisfied.

Or perhaps I would go somewhere I’ve never been, like Paris, Rome, or the Great Wall of China, and spend the day walking around as a wide-eyed tourist.

Maybe I would do something I’ve never done, like skydiving or scuba diving or cliff diving. Probably not cliff diving.

Who could blame me if I declined the pill altogether. I have struggled to come to terms with my limitations, and this 24 hour dalliance could be nothing more than a cruel tease. It might do more harm than good.

But in the end I think I would take the pill, and I know what I would do – climb Mount Katahdin, the highest mountain in Maine. Katahdin is one of those peaks that can be ascended by recreational climbers and hikers – no mountaineering skills required.

In 1982, soon after my high school graduation, I set out to climb Mount Katahdin with Kim, my best friend Dave, and his girlfriend Linda. We got within sight of the summit and decided that was close enough. I can’t remember our excuse. We were tired or hungry or thirsty or late for some appointment or a bit of everything. Not one of us stepped up and made an impassioned speech like, “We’re almost there. We have to reach the summit or we may regret this for the rest of our lives.” We didn’t reach the summit that day, and I never went back, and I have regretted it for the rest of my life.

More importantly, if I could climb to the top of Mount Katahdin I would follow in my mother’s footsteps, as I have in so many other ways. In 1956, as a 22-year-old, she climbed Katahdin. Below is a picture of her at the summit. In 1967, two years before she became a quadriplegic, she climbed Mount Katahdin for the last time (second photo below).

Yeah, if I had one healthy day I would definitely climb Mount Katahdin to right the wrong from 1982 and to honor the memory of my late mother.

At Least I’m Not Alone

There are a number of ways that life is more tolerable for people with MS today than twenty or more years ago. One of the most important improvements is our ability to connect with one another through the internet. Misery loves company.

Since my diagnosis in 2001, I’ve been a member of several online communities. I was at MS World for a time, but I quit because of their silly rule that you couldn’t share links to websites. It’s impossible to effectively communicate with people anymore if you can’t direct them to important websites. I wonder if they still have that rule.

During the CCSVI heyday I spent a lot of time at This Is MS. For a while I dabbled in PatientsLikeMe. I very much enjoyed the folks over at Kurmudgeons Korner, but I let that relationship fade. Someone recently introduced me to a site called MyMSTeam. I signed up, but I have done nothing there yet. I’m probably forgetting a couple of forums as well. I’m still active at only two sites today. I am an administrator at Primary Progressive Multiple Sclerosis – PPMS, although admittedly not a very active one. This is a Facebook page which shares tons of valuable information on our little corner of the MS world.
MyCounterpane is a beautiful website built by Kate Milliken. If you have MS and you haven’t checked out Kate’s creation yet, I recommend you do that sooner rather than later.

Most of my online interactions, however, occur through the network that has formed around this blog.  Every week I receive a few comments on my posts, and a ton of emails. I have wonderful discussions with these folks.

I don’t know what I would do without my online MS friends. But here’s the sad truth. I would gladly never communicate with any of you again, I would even be willing to forget that I ever met you, if I could go back in time and not have contracted this horrible disease in the first place.  I love you guys, but I wish I had never needed you, nor you me.

But no such time travel is forthcoming, so thanks to all of you for helping me enjoy this shitty ride a little bit more, no, a lot more, than I otherwise would have.

Stay in touch.