Monday, July 26, 2010

Please Welcome CCSVI Alliance’s New Website: CCSVI.org

ccs_hor As many of you know, on March 17, 2010, I was diagnosed with and treated for a condition called Chronic Cerebrospinal Venous Insufficiency, or CCSVI.  To read about my experience, click here

CCSVI is thought to be related to multiple sclerosis, such that it may significantly contribute to the development of MS, and such that treatment of the condition through balloon angioplasty or stent placement in the veins of the central nervous system may prevent further neurological damage.  In fact, many patients have even experienced improvements after treatment (but many of us haven’t). 

The MS patient community is a frustrated lot.  Until about 20 years ago there were virtually no disease modifying treatments.  “Diagnose and adios” was the standard approach for doctors.  Then, a series of drugs began receiving FDA approval for their abilities to at least moderately alter the course of the disease in Relapsing Remitting patients.  Very little, however, has been found to be effective for Secondary Progressive, and nothing has been found for Primary Progressive patients.

Even these FDA approved drugs for Relapsing Remitting MS leave much to be desired.  None of them represents anything close to a cure.  The drugs are very expensive, on the order of $30,000 per year or more. The high costs represent one level of unpleasantness. The drugs are administered as a self injection daily, several times per week, or weekly; or they are given by IV. This is a second level of unpleasantness.  Each treatment comes with its own collection of significant side effects, such as flu-like symptoms, heart problems, and even death (to be fair, the flu-like symptoms are much more common than heart problems or death). These side effects represent a third level of unpleasantness. Finally, their effectiveness is highly questionable in terms of stopping disease progression (click here for that report).  Their lack of efficacy for a large portion of the MS population is the final and ultimate shortfall of these treatments.

So, when a fresh idea like CCSVI came along last year, it gave new hope to the MS patient population. However, the medical community insists that every new treatment must be subjected to rigorous scientific evaluation, and rightfully so. Typically, such an evaluation is conducted by and paid for by pharmaceutical companies who stand to make millions if the given treatment obtains FDA approval. Even then, it takes years to obtain such approval.  In the case of CCSVI, there is no single deep pockets organization to drive the research.

Patients are frustrated because they are suffering, and they are piling up irreversible neurological damage every day.  When a potential blockbuster like CCSVI treatment is not immediately made available to them, they get angry, and vocal, and resourceful. On the other hand, medical scientists also become frustrated when patients demand treatments that have not been thoroughly proven through a series of independently conducted, double-blind, placebo-controlled studies.  These scientists have seen so many potential treatments fall be the wayside under such scrutiny.  Some scientists believe CCSVI will endure the same fate. 

CCSVI has become THE hot topic in the multiple sclerosis patient community, and is garnering more and more interest in the medical/scientific community every day.  In response to this interest, and in order to further advance our understanding of the connection between CCSVI and MS, CCSVI Alliance has launched its new website- http://www.ccsvi.org/

The CCSVI Alliance mission statement reads:
CCSVI Alliance is dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals' exploration of Chronic Cerebrospinal Venous Insufficiency (CCSVI).

In honor of the website launch, check out my new license plate.

IMG_2016

Tuesday, July 13, 2010

“How are you doing?”

This is not to be confused with Joey’s signature pickup line on Friends. Completely different context.
Also, this is not to be confused with the common greeting “how are you?” People actually state “how are you.” They don’t ask it. The acceptable responses are:
“Good.”
“Good, how are you?”
“Fine, thank you.”
or similar.
Here are some unacceptable responses to the greeting “how are you?”
“Shitty.”
“None of your effing business.”
“My Aunt Eunice died.”
or any response that assumes the other person is actually interested in the details of your private life.
But this post is not about answering the question/greeting “how are you?” This post is about the much different question “how are you doing?” With the addition of a single word, the phrase transforms from an innocuous greeting to a loaded question, especially when it is asked of someone with MS or an equally terrible condition (like cancer, Lou Gehrig’s disease, or a faithful devotion to Cleveland sports teams).
When someone asks me “how are you doing?” I have a decision to make. Do I tell them the truth, or do I give them a canned response? It depends.

I believe that most people who ask me this question sincerely want to know the answer. They wonder if the disease is progressing. They wonder if I’m coping well. They wonder if I’ve found an effective treatment yet. And I believe that most people who ask me this question do so altruistically. They like me, and they hope for good news. I suppose a few of them may ask me how I am doing because they covet my wife or my shotgun, or both, and wish me a short life. Perhaps they remember when I gave them a wedgie in Junior High and consider news of my misfortunes as their retribution. I suppose that occasionally the person asking is secretly hoping for a sensational bit of news or gossip from me, just because they are the gossiping type. But these negative reasons are by far the exception (I hope).

If I choose the easy route, my canned responses are “good” or “hanging in there” or “about the same.” These responses require almost no effort- I’m talking about emotional effort- on my part. I reserve the right to respond with minimum exertion whenever I feel like it. Just because someone invites me delve into the gory details does not obligate me to do so. I give the canned responses when: it’s an inappropriate question because I don’t have a close relationship to the person, if the person asks me that question too often (even if we are close), or if I’m simply not in the mood to answer.

I reserve the more honest, detailed, forthcoming responses for when I have the emotional energy in reserve, and am willing to expend it. These complete answers often result in uncomfortable moments. I don’t like uncomfortable moments.

One of the highlights of my day is connecting with people that I care about. It raises my spirits. Now that I don't work, friendly human interactions are fewer. So if you immediately ask me how I am doing, you might be ruining the highlight of my day, which is connecting with you.
Here's my advice on when you should ask somebody like me “how are you doing?”
  1. Ask me if it's been a long time since you last asked me (but never asking me is almost as bad as asking me too often).
  2. Ask me if I am the one to raise the issue of my health (or your health for that matter).
  3. Ask me in a more specific manner if you can. For example, if you know that I went to New York for a procedure last week, instead of asking me “how are you doing?” ask me “how did that procedure go in New York last week?” The more specific questions require less emotional energy to answer than the more nebulous “how are you doing?”
  4. Ask me later in the conversation, after the excitement of reconnecting with you has begun to wane. Don't ruin the magical moment when we reconnect. Let’s talk about the good stuff first.
  5. Ask me at a bar, over drinks.
  6. Ask me in your private jet, on our way to Maui for an all-expenses-paid vacation.
This reminds me of a more general list I posted a few months ago, called How to Interact With a Disabled Person: 101. So many rules, Mitch? I know. It’s a complex game.

My goal here is not to have you walking on eggshells around me. I am not thin-skinned, and I’m not easily offended. In fact, please do ask me once in a while, “how are you doing?” It shows you care, and maybe I do want to talk about it. If I don’t, I’ll simply give you a canned response. I won’t be offended.
Clear as mud, right?

Just keep in mind. When you ask someone with a progressive disease “how are you doing?” you are asking a lot. Are you ready for the answer?

Sunday, July 4, 2010

The Crap That Runs Through My Head

imagesCANSJ7J9Such as...

“What if this weren't a hypothetical question?” 

And, stuff like the following little conundrum.  On Wednesday I took my handcycle for a ride. I felt strong. I covered 2.6 miles with only a couple of stops. This is a very modest distance for a healthy person, but trust me, for a person in my condition it was impressive. The ride invigorated me, and set the stage for a relatively energetic day.

Then I went out Saturday morning and only covered 2.1 miles, and had to stop about 10 times. The ride did not invigorate me.  In fact, I never completely recovered from it until the next day.  What changed?

As I was finishing up Saturday’s ride, I started to ponder that very question. What changed?  I approached the problem in a systematic fashion. The cause of my weak handcycling performance could have been due to differences outside my body or differences inside my body. Let’s consider the outside first.

Was the course different? No, I followed the exact same course (a little shorter on Saturday though).

Was the weather different? No, it was sunny and about 70 on both days, with light winds.

Was the bike different? I don’t think so, although I didn’t inspect it closely.

Time of day?  Nope.  9:00ish on both days. 

Overall, it doesn’t appear that any external factors were responsible for my disparate performances.

imagesCABNUU8S So what was different inside my body? Two possibilities come immediately to mind: what I ate and how I slept.

On Tuesday night, before my Wednesday morning ride, I slept about 7 hours, which is my average. On Friday night, before my Saturday morning ride, I slept 8.5 hours, which was very unusual.

On Tuesday, I consumed 1,722 calories. Remember, I’m counting calories these days to try to lose weight. On Friday, I consumed 1,976 calories, which included 2 lite beers in the early evening.

Was it my menstrual cycle?  Nope.  Last time I looked I have only male reproductive parts.   

I can’t think of anything else that I did differently on the days before my morning rides. Was the combination of more calories and more sleep on Friday the difference?  Did Friday's modest alcohol consumption have such a profound effect on Saturday's handcycling performance? 

Another possibility is that there were changes inside my body other than diet or rest. The obvious candidate is MS. Remember though, I have PPMS, which means that my health doesn't change much from day to day. I don't have those classic good days and bad days like people with RRMS do.  But maybe having a chronic, disabling disease causes me to constantly walk a fine line, where even the slightest changes in variables either external or internal to my body have a profound impact on my ability to function.

Or maybe I just need to stop thinking so much. A less analytical person might consider the same experience and say, "hmm, I wasn't nearly as strong today as I was on Wednesday. Oh well, it's probably nothing."

What do you say?