I'm a Panelist on a Live Webinar about MS Clinical Trials

Kate Milliken, my friend and the founder of MyCounterpane.com, invited me to be a panelist for a webinar on Wednesday, August 31, at 11 am Eastern time. I'll be joined by Kate, who will moderate, and Bruce Bebo, Executive Vice President of Research, the National Multiple Sclerosis Society.

This will be a live conversation about clinical trials and MS – how to get into one and their risks and benefits. Bruce will discuss the clinical trial landscape for both relapsing/remitting and progressive forms of MS. I'll describe my experiences in 2005 and 2006 when I participated in a clinical trial for a drug called Rituxan. To read my blog posts about that trial, click here.

There are limited slots available, so if you would like to watch the webinar, live, register using this link. Time permitting, we'll take questions from the audience.

My iBOT Gets Recharged

Like a cat with nine lives, my iBOT wheelchair keeps cheating death.

For those of you not in the know, the iBOT is the most incredible wheelchair ever built. Unfortunately, due to bureaucratic red tape and insurance company cold-heartedness, this wheelchair is no longer manufactured or sold. A couple of years ago, the previous manufacturer, Independence Technology, stopped supporting it with parts and service. I’ve been holding my breath ever since.

Finally, a few weeks ago, my batteries began to fail. Other iBOT owners have toyed around with various companies that claimed to be able to recharge spent batteries. These attempts proved frustrating in terms of both product quality and customer service. I began to think that when my batteries failed my iBOT experience would be over. Not so fast.

I checked in at our users' group on Facebook called Save the iBOT to see if anyone had found a new battery vendor. A couple of folks had used a company in Washington, and one user had reported good results. I obtained the contact information and called Tom at Battery Pack Rebuilders. Indeed, Tom explained, he had rebuilt three sets of iBOT batteries and they all seemed to be working well. Even better, his fee for rebuilding batteries was lower than Independence Technology’s.

I explained to Tom that I had an important event coming up on August 20, and asked if he could expedite the turnaround. He said he could. In fact, he received my batteries on a Friday, worked on them on Saturday, and shipped them back to me on Monday. I have run them through an entire cycle and they appear to be functioning just as well as the batteries from Independence Technology.

There are still a million things that can go wrong with my iBOT, things that I won’t be able to fix. But for now, the iBOT lives to see another day, and this coming Saturday will be a very special day. Check back next week to read more about it.

To see me and my iBOT in action, check out my YouTube channel.

Read this good news about the next generation of iBOTs.

A Visit to My MS Neurologist

If you have MS, your neurologist is probably your MS doctor. Poor bastard.

Meet My Doctor

I've had the same neurologist since before my diagnosis. Let’s call him Dr. M. It was only by the luck of the draw that I ended up seeing him 17 years ago when I had a little hitch in my step—more evidence of my charmed existence. Other than this annoying little chronic disease, good fortune has rained down on me over and over again.

For the first 8 to 10 years, Dr. M and I were hyperactive: trying one treatment after another, fighting with the insurance company for reimbursement of off-label drugs, and discussing potential treatments still in the development pipeline. He supported all of my Hail Marys in any way he could.

Ours has never been a relationship where I make an appointment with him to find out how I’m doing. I go there to tell him how I’m doing. Sure, he gives me a cursory exam now and then, and we’ve done a few MRIs over the years, but not so much lately. I have advanced primary progressive multiple sclerosis, and we both know there’s only so much that can be done for me.

To date, no treatments have ever been approved by the FDA for PPMS. Around the end of this year, however, we are expecting a drug called Ocrelizumab to be the first. Dr. M and I are cautiously pessimistic. I’ll probably give it a try, but there is evidence that it works best on people who are younger and less disabled than I am.

So what do we talk about once or twice a year when I visit my neurologist, like I did on Monday of this week? It’s about a 50-50 split between medical discussions and general bullshitting. General bullshitting consists of catching up on one another’s family life, complaining about getting old, complaining about the cost of raising children, and complaining about politics (we tend to have the same political slants, so that dominated this week’s visit).

What Should We Expect From Our Doctors?

I enjoy my appointments with Dr. M. I appreciate how he listens, how supportive he is, and how he gives such solid advice. Most of all, I appreciate how he doesn’t sugarcoat anything. That’s not what I need from my doctor.

Do you have a positive relationship with the most important doctors in your life? If not, maybe it’s time to consider a change.

“A Medical Marijuana Story” or “Mitch Does a Mitzvah”

We have friends, Robin and Sam, who live in Providence, Rhode Island. They visit us a couple of times a year. Two weeks ago we spent the day with them in our beautiful city of Portland, Maine. As we drove down Congress Street, I played tour guide and said, “On your right is Nosh Restaurant—a carnivore’s haven. Oh, on the left is Otto Pizza. Their mashed potato and bacon pie is my favorite.”

I continued, “Up here on the right is my medical marijuana dispensary.”

Robin asked, “Are you making much use of that?”

“Now and then, but it’s not helpful for my major symptoms.”

“You’ll never believe this,” Robin said, “but my 82-year-old father has raised the subject. He suffers from neurologic pain in his legs. He’s a stoic, tough old man, so I know if he complains about pain it must be awful.”

“Opioids?” I asked.

“He refuses to touch them, even if they might work. This is a man who has never done any drugs his entire life. Doesn’t drink. I think he sees cannabis as a natural treatment.”

“We could pull into the dispensary right now, and I could pick some up for him to try, except it’s illegal for me to give away medical marijuana.”

“I couldn’t ask you to do that.”

So we definitely did not pull into the dispensary. I certainly didn’t go in and buy a strain of marijuana called high CBD, which is supposedly good for pain control but doesn’t make the user “high.” I didn’t give it to Robin, and she didn’t take it back to Providence.

The next day she didn’t visit her 82-year-old father and tell him that she had acquired a sample of medical marijuana. Her father didn’t consult with his neurologist, who didn’t recommend that he give it a try.

Robin’s 82-year-old father didn’t consume the high CBD edible, and it didn’t eliminate all the pain in his legs. He didn’t decide that he would pursue obtaining medical marijuana legally through his state’s program.

And Robin didn’t enjoy blowing her brother's mind when she didn't call him to say, “I just gave our father some marijuana today.”

Did I mention Robin’s father is Jewish? I so wish I could have helped him because, who knows, maybe he would have said something like, “Thank Mitch for me, and tell him he did a mitzvah.”