Tuesday, March 31, 2015

The Hardest Thing about Having MS

I was interviewed earlier today by a health marketing company. Don’t look for a magazine article about me, though. These folks are conducting research on primary progressive multiple sclerosis (PPMS) by speaking with patients. The marketing company paid me for my time with a $75 gift certificate from Amazon.com. I must remember to buy something fun with that money, not just put it in the pot and have it pay for my next order of printer ink.

The interviewer asked lots of questions, but the only one that stumped me was, “What would you say has been the hardest thing about having MS?” So many good choices – which one to pick? I fumbled and stumbled and didn’t give a very good answer. But after thinking about it for a while, I know what I should have said.

For me, the hardest thing about having MS is that my future has been stolen. I received my diagnosis four days after my thirty-eighth birthday. My life was pretty sweet at the time. I had an amazing wife, two beautiful children, a career on the upswing, all the man-toys I wanted, and so much more. Even with that success, I felt that my best days were still ahead of me. I no longer feel that way.

Quick disclaimer – I know this isn’t terminal cancer, ALS, or Alzheimer’s. Those diseases don’t only steal your future, they stomp all over it. But PPMS is no lightweight.

I always had big plans of where I wanted to be in five, ten, or twenty years. I wasn’t na├»ve. I understood that these plans would probably never play out exactly the way I imagined them, but my vision for the future was optimistic, and rightfully so. Chasing these dreams was a big part of what motivated me to get out of bed each day.

I still plan for the future, but only in terms of months, because I can’t imagine what life will be like years from now. How much longer will I function like I currently do? Will I always be able to live at home? Will I remain a contented person forever?  I can’t know. I mostly try not to think about it.

Being the glass-half-full kind of guy that I am, the fact that MS has stolen my future does have one benefit. I now live more in the present than I used to, one day at a time and all that jazz. This is a good thing.

Today is full of challenges, but I’m meeting them. It’s tomorrow that scares me.

What’s the hardest thing you’ve had to deal with because of MS (or some other challenge)? Do you feel MS (or anything else) has stolen your future?

Note: If you have PPMS and you would like to take part in this research, let me know.

Monday, March 23, 2015

My MS Radar and Other Intuitive Devices

Kim and I attended a wedding in Massachusetts last summer. Throughout the ceremony and at the reception, I noticed a lady in her thirties using forearm crutches. My MS radar came on, and I grew confident.

I encountered her when we were both leaving, and I asked, “MS?”


Score! We enjoyed a long conversation where we compared notes about how we’ve dealt with the disease. I gave her an iBot demonstration and told her about my blog. Good stuff.

Fast-forward to this past Friday night. Kim and I participated in happy hour at the Snow Squall, as we often do. I saw a lady work her way through the crowd using forearm crutches. As Kim and I ate our meal, I stole glances at her to try to figure out if she had MS. I couldn’t decide. There was something about her that made me think she might not, but then again…

As we prepared to leave, I took a chance. “Excuse me for interrupting, but I was admiring your forearm crutches. I have a pair just like those. I’m curious if you have the same condition that I have.”

“Oh, you’re not interrupting. What condition do you have?”

“Multiple sclerosis. And you?”

“I have nerve damage from radiation treatment that I received forty years ago.”

I wasn’t embarrassed. She was a sweet lady, and Kim and I spoke with her for ten minutes before we left. Because I’m so obviously disabled, I get a pass on what would normally have been a social faux pas.

The next day, I said to Kim, “There was something about that lady at the Snow Squall last night that made me unsure if she had MS, even before we spoke to her, but I can’t put my finger on it.”

“I know what you mean. I think she looked too…healthy.”

“That’s it!”

Progressive MS kicks your ass in a variety of ways. By the time you have visible walking problems, you’re no longer as perky, energetic, or healthy looking as this woman was.

One setback won’t discourage me from approaching people in the future who I think may have MS. There’s such a huge upside if I’m right. Meeting new MS friends is always rewarding.

Not only am I proficient at guessing if someone has MS. I also have strong gaydar. I can tell if a person is straight or gay almost immediately. I know, it shouldn't matter, and it doesn't. It's just the way my brain works. Incidentally, I'm a big supporter of gay rights, and I have lots of gay friends and readers.

We used to own a Ford Explorer. The mileage got high, and the maintenance bills piled up, so we decided to sell it. I advertised on Craigslist and divulged the known problems.

I received an email from Jessie, and she wanted to come look at the vehicle the next day.

There was a light, steady rain falling when Jessie knocked on the door. I invited her in. She was medium height, stocky build, short haircut. She asked me detailed questions about the vehicle. This woman knew way more about cars than I did. My gaydar started twitching, but I was far from certain.

Jessie seemed trustworthy, so I handed the keys to her so she could take the Explorer for a drive. Being in a wheelchair, I couldn’t exactly accompany her. She drove around for about ten minutes, returned, and crawled underneath the vehicle for quite some time. She didn't mind the rain. The brake fluid was low, so she went to the local NAPA Auto Parts store, bought some fluid, topped off the reservoir, and crawled back under to see if there were any leaks in the brake lines.

Satisfied, she came in the house to start the negotiations. We went back and forth a little bit and agreed on a price. The vehicle was registered in both my name and Kim’s, so we needed Kim’s signature, but she was at work.

Jessie said, “Well, my partner will be picking me up in a few minutes. I can take the paperwork to Kim at her school so she can sign it.”

Ding, ding, ding. The word “partner” was all my gaydar needed to hear. I am so good, I thought to myself. I just see things other people don’t.

It so happened that there was a gay-rights referendum on the ballot that year in Maine, and the election was only a few weeks off. I thought this would be an excellent opportunity to get a perspective on the issue from a member of the LGBT community.

“I’m curious to know, how excited are you about the gay-rights referendum? If it passes, will it make a big difference in your life?”

“I don’t know what you’re implying, but for your information I’ve been married to my husband for twelve years and we have two children.”

“But, but,” I stammered. “You said partner…”

“My BUSINESS partner. My business partner is coming to pick me up in ten minutes.”

It served me right for stereotyping. I backtracked and apologized and tried to extract my foot from my mouth. Jessie let me off the hook and we continued with the transaction. I called Kim to explain that the buyer would be arriving shortly with paperwork to sign.

I added, “Don’t ask her if she’s a lesbian. I already did, and she’s not.”

“You didn’t.”

“Oh yeah I did.”

You know what else I bet I'm good at? Guessing if women are pregnant. I'm going to try that next.

Tuesday, March 17, 2015

Top 10 Reasons You Don’t Read My Blog

I’ve always said I couldn’t own a restaurant, because if people didn’t show up in droves for every meal I would take it personally. It turns out that having a blog is just as bad. If large numbers of people don’t visit each day I wonder what's wrong with me. So, in my typical self-absorbed manner, I’ve come up with the top 10 reasons you don’t read my blog.

Reason #10 I am an egotistical narcissist, and this post proves it – I certainly do write about myself more than anything else. I like to think it’s because I’m dealing with my challenges well, and I want to share these experiences with folks who might benefit from them. But maybe I really am an egotistical narcissist, and my motivation behind this entire post is to fish for compliments. You see right through me.

Reason #9 You didn’t know this blog existed – There are roughly 7 billion people on the planet. Only a few hundred, or maybe a thousand people even know this blog exists. So roughly 6,999,999,000 people have the most common reason of all for not reading my blog.

Reason #8 You forget to read it – I hear this a lot. If you are only being polite, then the real reason you don’t read it is probably somewhere else in this list. If you are being sincere, I have solutions. The easiest is to have each new post emailed to you. There is a box on the top right-hand corner of my homepage where it says “enter your email address.” Then you push the subscribe button. You’ll receive a confirmation email that you need to respond to in order to finish the subscription process.

Reason #7 I make you sad – I don’t sugarcoat my situation, and some people are saddened to read about my life. They want to spend their time with happier thoughts. I get that.

Reason #6 I show you the future – For readers who have MS, you may think you’re looking in a crystal ball, and you don’t like what you see. I get that too. But remember, most of you will never deteriorate to the point I already have, thankfully (there I go, pulling a #7 again).

Reason #5 You are annoyed by how well I’m coping – I think this is a reason that some people, with MS or with any other difficulties, are not inclined to read this blog. No matter how hard you try, you can’t seem to cope with your problems as well as I do with mine, and you don’t need me to constantly remind you of that. This is a tough one.

Reason #4 You don’t have all the advantages I have, so you can’t identify with me – Maybe you don’t have a great support system, a loving spouse, or financial stability. “Of course he’s content,” you say to yourself. “He should try to walk in my shoes.” Yup, I understand where you’re coming from with that, even though I can’t walk in your shoes.

Reason #3 I think I’m funny, but I’m not – You probably have a more highly refined sense of humor than I do. That’s unfortunate.

Reason #2 My writing is not that interesting – I get that, especially some weeks, like maybe this week, and last week, and the week before. But three weeks ago? Come on! That was some good shit.

And the #1 reason you don’t read my blog is that it’s no fun for you – If you find that reading my posts is a chore, then maybe you just need to let me go. To extend the restaurant analogy from the opening paragraph – you can walk right by my door and go to the blog down the street. I won’t even see you. That’s what I often do with both restaurants and blogs.

So tell me, what’s your reason for not reading this blog? Wait. Crap. Never mind. My bad.

Tuesday, March 10, 2015

I am Reluctantly Writing About the Weather

I don’t give a damn about other people’s weather, and here I am writing about mine. At least I have an angle – the wheelchair angle.

My life is so different in winter as compared to summer. In warm weather the area I can independently navigate is large. It starts with the wooden deck and
brick patio in my own backyard. Then, in my immediate neighborhood I have bars, restaurants, stores, banks, the post office, City Hall, my doctor’s office, several parks, oceanfront vistas, and more. If I jump on the Greenbelt Pathway, I can be at Bug Light Park in twenty minutes, with sweeping views of downtown Portland, Casco Bay, and lighthouses. If I go in the other direction and cross the bridge to Portland, I have Maine’s largest city at my disposal. Finally, if I take the bus (and I have a bus station about a block away) I gain access to all of the greater Portland region.

In the winter, I lose almost all of this, at least independent access to it. The double-headed monster of cold and snow drives me indoors. I'll occasionally have somebody bundle me up so I can head out to one of the lunch places closest to me. That’s it. Otherwise I wait for Kim to give me a ride somewhere interesting, or I stay in my home, which is a wonderful home.

You can imagine how much I look forward to spring weather. My world opens up. This year it will take a little longer than usual because of the heavy snowfall we experienced. The snow banks are just starting to shrink.

Because of my book project, I’ve had something to keep me occupied indoors all winter. But I’m ready to venture out. No, the word ready doesn’t do justice. What word…what word?

I know: I’m aching to venture out.

My redneck friends would say: I’m hankering to get out.

My literary friends would say: I have a longing, nay a hunger, to venture forth.

My engineering friends would say: The addition of an outside option would bring me greater utility, so I desire that change in state.

My California friends would say: Dude, why do you live in Maine, in the winter, in a wheelchair?

Some Pictures

The ocean at the end of our street has been frozen for weeks.

Nick took this picture during a storm at my beloved Bug Light Park.

Amy took these pictures from the comfort of Nick's truck (smart girl).

Wednesday, March 4, 2015

Talk to Old People

When I set out to write this book about my mother and me, I interviewed a lot of people who knew her back in the day. With very few exceptions, these folks are now old people*, and I don’t think they mind me describing them as such.

I accomplished what I set out to do in these interviews. I gained greater insight into what my mother was like before I came along and when I was too young to remember. But these encounters gave me more than just material for my book. I was able to reconnect with folks who were so prominent in my childhood. If not for this project, I wouldn’t have had an excuse to contact many of these people. These conversations were fun, informative, meaningful, and even therapeutic both for them and me.

So, my message in this blog post is to find any pretense to talk to old people, formally or informally. Consider recording the conversations where you ask them to remember details from long ago. If not, you’ll forget what they said, and it will be lost forever.

One more thing – if you have any stories about my mother that you haven’t already shared with me, please shoot me an email and we can correspond, Skype, text, telephone, or meet at a bar and have a drink about it.

*Old People: anyone ten years older than whatever age I am at the time.

Wednesday, February 25, 2015

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.”

Tuesday, February 17, 2015

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

Tuesday, February 10, 2015

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.

Wednesday, February 4, 2015

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.

Tuesday, January 27, 2015

My Remote Life

I can’t just say to Kim, “Pass me the remote.” That could be any of almost twenty devices that I work with. Everyone has a lot of remotes, but I rely on them a little bit more than the average person.

I spend all my time in one of two places – my computer station in the living room or my bed in the, you guessed it, bedroom. Let’s start in the bedroom.

  • We have a television remote which we rarely use. (item 1, below)
  • Kim and I each have a DirecTV supplied universal remote that operates our TV and receiver. (items 2 and 3)
  • I have a remote on a lanyard that operates my overhead, Sure Hands lift system. (item 4)
  • I have a wired remote that operates my Power Bob bed. (item 5)

In the living room I have a few more remotes.

  • One of the people who lives in my house is pretty good with electrical gadgets. The ceiling light in the living room, the overhead light at my desk, and the lights in the dining room are all operated with small remotes. (items A, B, and C, respectively)
  • The gas heating stove that we just installed a few weeks ago is operated by a remote. (item D)
  • The shades in the living room are each operated with their own remote. (items E and F)

And finally, I have a Logitech Harmony Smart Control universal remote that operates my audiovisual equipment. (Item Z). It replaces all the other remotes shown in the picture below.

I’ve preprogrammed the Harmony remote for single button control of the four most common modes that I use:

  • Watching television fed by DirecTV, audio through Sony sound bar
  • Watching television fed by Chromecast device, audio through Sony sound bar
  • Watching television fed by Bluetooth player, audio through Sony sound bar
  • Listening to music through the Sony sound bar, fed by any number of Bluetooth MP3 players that we have

I also have a Harmony app on my iPhone, which provides all of the same functions.

Here’s a short video, which I narrate, that demonstrates how my Power Bob bed, my Sure Hands overhead lift system, my gas heating stove, and my living room shades operate with their remote controls. If you're reading this post as an email, click here to watch the video.

I know I’m not the most remotely connected person. Some people start their automobiles or adjust the temperature in the houses from anywhere in the world. I know wheelchair users who have a device built into their chair so they can control many household items in the same way they control their wheelchair.

I operate each of these remote controls with my right hand. My left hand is fairly useless. I worry about the day when my right hand becomes as useless as my left. That’s when things will have to get really high-tech.