A Better Way to Measure MS Progression
The Buffalo Neuroimaging Analysis Center (BNAC) is a world-class center for MS research. As with all academic research, however, it can be difficult for patients
The Buffalo Neuroimaging Analysis Center (BNAC) is a world-class center for MS research. As with all academic research, however, it can be difficult for patients
I don’t want to be an inspiration. I only want to inspire. If you exhibit visible MS symptoms then someone, somewhere, sometime may have called
I have no excuse. Here is something of an update. It’s the least I can do. My health has deteriorated at about the same pace
If you are fortunate enough to be in a position to contribute to charitable causes, I ask you to consider this organization so close to
Clinical Trial Opportunity I love what they are doing at the University of Pittsburgh Department of Rehabilitation Science and Technology. These folks are investigating the
I would never say that someone has only a little multiple sclerosis. It’s a horrible disease in all its manifestations. But I’m quite comfortable in
I was recently asked to give a talk at a TEDx event at Cape Elizabeth High School. Of course, I couldn’t do it without Kim,
My passion these days, and the primary reason I have been neglecting my blog of late, is accessible housing and 3i Housing of Maine. We
I am proud to serve as a Board member with 3i HoME, a non-profit on a mission to effect real change for our families, friends,
Last week marked the 20-year anniversary of my MS diagnosis. As a society, we place extra emphasis on round-number anniversaries like the 20th. But for
Marva Serotkin, a friend of mine and a tireless disability advocate, helped develop this four-part web series entitled Disability and the American Past. Sign up
Check out the article by clicking here.
Warning: this is a story about a man and his pee. I’ve done everything possible to avoid a suprapubic catheter (SPC). To me, it meant
My friends and family all thought I would be among the first to get a vaccine because, as we say in Maine, I’m a hurtin’
Although I agreed to wear a mask whenever I left the house for most of 2020, I was physically unable to put it on or
This fall I finally dug into Mitch Sturgeon’s memoir, Enjoying the Ride: Two Generations of Tragedy & Triumph.1 I don’t often trust memoirs, but I trust
I belong to a nonprofit organization, 3i Housing of Maine, whose mission is to provide supportive housing for non-elderly adults with physical disabilities. We are
As of this writing, the coronavirus pandemic has never been worse. Records for infections are being shattered. Hospitals are overrun. Death counts are soaring. Yet,
Down East Magazine is considered the gold standard for showcasing our beautiful state of Maine, hands down. So, when they published an essay of mine
I live in the great state of Maine. What’s so great about it? Let’s start with lobsters, blueberries, and potatoes, sometimes all in one sitting.
Dan and Jennifer Digmann are America’s MS couple — they both have this wonderful disease. In fact, they met at a MS conference in 2002
I learned only recently that the state of Maine implemented a new online voting system for persons with disabilities. How awesome is that? I can’t
If not for the support of my amazing wife, Kim, I could find myself in a nursing home well before my time. Others are not
I recently acquired one of the new generation iBOT wheelchairs. My feelings are best expressed in the thank you note I sent to Mobius Mobility,
People who lose limbs get prosthetics. I’ve seen some awesome robotic prosthetic arms like DEKA Research’s Luke Arm. I may as well not even have
Sometimes, I feel the itch to do things I used to do before MS, like travel, hike, golf, and stand up to pee. Recently, I’ve
Readers of this blog know that I employ technology as a means of navigating my way through life with advanced MS. So, when Novartis asked
Joe Biden is the presumptive Democratic Party nominee for US President in the 2020 election. His campaign recently published a detailed, 20-page plan for addressing
I’m running a promotion through Sunday, June 7. E-book copies of ENJOYING THE RIDE: Two Generations of Tragedy and Triumph, are free. Enjoy a copy for yourself.
My dear friend, Kate Milliken, called me a few months ago to see if I would be part of a short documentary she was co–producing
The people who study such things have concluded that most of the United States is at or near the apex of this coronavirus pandemic. Life
Click here to see the video I made for multiplesclerosis.net
A Thought from My Brother, Andy He posted this on his Facebook timeline: “I have to admit, I really didn’t appreciate what I had until
Let’s give this a try: more frequent, shorter blog posts, with a mixture of hard truth, social media humor, and irreverent observations about life with
If you’re looking for updated information on the spread of the coronavirus, or medical advice about how it might affect people with MS, or restrained commentary
Recently, Novartis invited me to be a judge for their Innovation Prize, which will award $250,000 to the most promising new technology for people with
There are so many ways to share your personal story. One of the most audacious is to write a book. I know this, because I
Novartis is offering a $250,000 prize to fund the development of pioneering innovation with great potential in advancing Assistive Tech for Multiple Sclerosis. Applications will
Eighteen years is a long time to have had MS. Unimpressed by that number? How about the fact that I’ve lived with MS for upwards
No, I’m afraid I didn’t win. There were thousands of entries and only a few awards. Yet, I didn’t come away with nothing. Each entrant
I receive a steady stream of MS news items. Unfortunately, almost none of it applies to me. I do have MS, just not that type of MS. I
People have the best intentions. They want to say something uplifting or profound to affect me in a positive way. They shouldn’t. It usually falls
Although I may appear to have my housing situation well in hand, there is only one thing standing between me and the nursing home —
First, a question: Can you have a little MS or a lot of MS? I don’t know about describing our disease like that. But if
In celebration of the one year anniversary of my book launch, free copies of the electronic version of ENJOYING THE RIDE: Two Generations of Tragedy
In celebration of the one year anniversary of my book launch, I will be giving away free copies of the digital version of my book—
Yes, it’s been an incredible 10 years, but I’m not going to fill this post with all sorts of sappy, emotional statements about how meaningful
Acceptance Speeches, Spoken and Unspoken or My Night at the Maine Literary Awards Let’s face it. Few awards show acceptance speeches are memorable or noteworthy.
On May 22, 2009, I was a full-time employee. The next day, May 23, I was permanently and completely disabled. So, what happened overnight? Was
I had begun to walk like a drunk, and not just on Saturday nights. Within three years of being diagnosed with primary progressive MS, I
I am thrilled to have been named a finalist by the Maine Literary Awards for best memoir, 2018. ENJOYING THE RIDE: Two Generations of Tragedy and
Author Talk at Prince Memorial Library On March 14, I gave a talk about my book, ENJOYING THE RIDE: Two Generations of Tragedy and Triumph, at Prince
MultipleSclerosis.net is one of the most widely read MS websites on the Internet. So, when they asked me to become a regular contributor — quite
Meegan Kennedy Hansen is a friend and a professor at Florida State University. This semester, she’s teaching a course in Literature and Medicine. She read
Click here to sponsor me in the walk! My awesome physical therapists, Back in Motion, have formed a MS Walk team this year, and they are walking
There were two other power wheelchair users on the ship. I’m talking real power wheelchairs, not the Hoverounds or scooters. One of the wheelchair people
When it comes to customer service, it’s difficult to beat a cruise. And when it comes to cruising, it’s difficult to beat the customer service
On days we were in port, we had two good options — visit some exotic location or take advantage of this incredible ship without any
Kim and I booked this cruise over a year ago, with great anticipation, because Celebrity Edge would be the newest, cutting edge cruise ship in the world.
When we leave the comfort of our home and venture out into the disabled-unfriendly world beyond, Kim and I know something will bite us in
Join me at Prince Memorial Library in Cumberland, Maine at 6:30 PM on March 14. See below.
As I wrote in my 2018 annual summary, I have been forced to learn how to complete more tasks without using my hands. This presents
I’ve always enjoyed the craft of writing. As a student, I dabbled in fiction, but as a senior in high school my prize essay was