Thursday, June 28, 2012

Getting an Ice Cream Cone- iBot Style

imagesI was tooling around the neighborhood in my iBot earlier this evening, going nowhere in particular. As we now live in the city, there is a McDonald's about a quarter mile from our house. When I was going by, I felt the irresistible urge to enjoy one of their vanilla ice cream cones. I pulled up to the restaurant and noticed that there were two sets of heavy doors that would have been difficult for me to manage. I looked around for some other patrons who might help me, but at that moment there were none.

And then a pickup truck pulled up to the drive-through. Hmm, I thought. So I put my iBot in balance mode and pulled up behind the pickup, waiting patiently while he placed his order. After he drove ahead, I sidled up to the microphone, and the attendant asked me for my order. I requested one ice cream cone. Apparently not being able to see me yet, she instructed me to drive up to the first window to pay.

Idling the iBot behind the pickup truck again, I waited good-naturedly as he paid for his meal. This time he noticed me in the rearview, and I behaved as if this was the most natural thing in the world to be doing. He then pulled ahead to the second window to receive his food.

When I revealed myself to the cashier, I got some strange looks from her and another employee.

I said, "I bet you don't get many wheelchairs in the drive-through, do you?"

With a big smile on her face she replied, "No, you're the first one."


Tuesday, June 26, 2012

Intrathecal Methotrexate Update, June, 2012

gec_02_img0116Yesterday I had my third treatment of intrathecal methotrexate, delivered via a spinal tap. Unlike my previous treatment, today I am no worse for the wear.

For a description of how I ended up on this experimental protocol, and for the scientific evidence that supports it, click here.

For an account of what went wrong with my previous infusion and caused me to lie flat on my back for nine days, read this post and then this post.

The Manhattan neurologist, Dr. Saud A. Sadiq, who has researched this treatment in progressive MS patients, prefers to employ a thin, 25 gauge needle to deliver the drug into the patient's spine. The local physician who is helping me on this, an oncologist who treats some of his cancer patients in this manner, was resistant to use such a thin needle. However, after my previous debacle where I had a nine day headache and two blood patch repairs, he agreed to give it a try this time around.

The procedure went well, and he had no difficulty with the 25 gauge needle. The infusion itself was relatively painless, but more importantly I had no post-lumbar puncture headache. The literature, and a couple of anesthesiologists I spoke to, supports the idea that these thinner needles are much less likely to generate a post-lumbar puncture headache than the standard sized needles. I like doctors who consider my recommendations and implement them.

It's easy for me to put into perspective the discomfort I sometimes feel during and after these procedures. All I have to do is be observant as I roll through this oncologist’s treatment room and see the dozen or so cancer patients tethered to their chemotherapy bags. At best they will be extremely uncomfortable for weeks, and at worst they will suffer long, agonizing deaths. That makes what I'm going through, in terms of treatment discomfort, minor by comparison.

But I do envy them in one respect. If I was given the opportunity for a more intense and risky treatment, but with the possibility of a complete cure, like these cancer patients have, I might not say no. That option simply doesn't exist for me though.

So, is my treatment working thus far? I told you that I could not make an accurate assessment in less than six months, and it's only been four months. You people are just unbelievable sometimes…


  
Note: To see all of my intrathecal methotrexate posts, click here. They are listed in reverse chronological order.

Monday, June 18, 2012

Celebrities with MS- We Need More of Them

imagesYou may be aware of the recent announcement that Ozzy Osbourne’s son, Jack, has multiple sclerosis. Jack, if you're reading this, please accept my thanks for going public with your private health issue and accept my heartfelt condolences regarding your diagnosis. As you've undoubtedly been told already, MS is not a death sentence by any means, but your life will never be the same. You can take solace in the fact that you are now part of a community of approximately 400,000 Americans, and more than 2.5 million people worldwide who are similarly affected. At some point, after you have adjusted a bit to your new reality, please consider wielding your celebrity to support our collective cause. We can use all the help we can get.

But let's face it, the MS cause needs what Parkinson's disease already has – a Michael J Fox. And right now, we don't have one. Sure, we have several celebrities such as Montel Williams, Richard Cohen, Annette Funicello, Teri Garr, David "Squiggy” Lander, Anne Romney, Clay Walker, Marc Stecker, and Jeff Beal who are known to have MS, and who are making considerable efforts on our behalf. But what we lack is somebody with the stature and commitment of Michael J Fox.

Let's consider what he has done for Parkinson's.

His charity, The Michael J Fox Foundation for Parkinson's Research, has become the largest private funder of Parkinson's disease research in the world, investing almost $200 million to date. The foundation is still going strong, and may someday be a significant factor in finding the cure for Parkinson's. That's right. The efforts of a single advocate like Mr. Fox could positively impact the 5 million or so people who are living with Parkinson's today, and the many more who may contract this disease in the future.

Although I wouldn't wish this disease on my worst enemy, imagine if someone like Angelina Jolie, Brad Pitt, Beyoncé, Katy Perry, Justin Bieber, Ellen Degeneres, Lady Gaga, Leonardo DiCaprio, Julia Roberts, or George Clooney developed MS? It would be devastating for them and their loved ones, but just think of the good they might do for millions of people with MS.

images (1)Every time I hear a celebrity announcing that they have a disease, I'm jealous when that disease is not MS. I sincerely hope that somebody of this A-list stature, who is inclined toward activism, joins our little fraternity and injects $200 million or so into research.  Does this make me a bad person?

Before closing out this post, I will issue a personal challenge to Ozzy and Sharon Osbourne. You are at least as well-known as Michael J Fox. Are you going to let that vertically challenged Canadian raise more money for his disease than you do for yours?

Let’s cross our fingers for a big celebrity announcement in the near future…

Please forgive my callousness, but I feel entitled to at least the tongue-in-cheek variety of it.

Tuesday, June 12, 2012

A Look Back

2010 06 15I launched this blog nearly 3 years ago. I know most of you started reading here more recently, so I thought it would be a good idea to rerun my original, introductory blog post, which still rings true. Current commentary is in red text.

Let's Get This Party Started


My legs are pretty much shot. My left hand is rapidly losing its dexterity and strength, and my right hand is starting down that road. My arms are still somewhat strong, but are getting weaker all the time. I can’t participate in many of the recreational or social activities that I used to. I can’t perform many of the basic functions that a person needs to perform to get through the day. I can’t even work for a living. I take a bunch of prescription drugs, sometimes of the experimental variety, because there is no know cure or even effective treatment for Primary Progressive Multiple Sclerosis.

The above litany is not a complete list of my MS symptoms. I've got more, but I'll spare you the complete accounting. My point being- if I don't mention it, don't assume I'm not experiencing it.

Bad luck, huh? Life is unfair, right? It must suck to be confined to a wheelchair. You might think that this would be so, but for me it is largely not the case. I have good days and bad days, but no more so than the average 45 (48) year old man. I’m not happy that I have MS, but I am happy. I spend almost no time lamenting over what could have been, or regretting my misfortune. Because I enjoy my life as much as I ever did (that's pushing it, I must admit), despite its challenges, am I crazy, in denial, or am I on to something? I started this blog in part to explore those types of questions.

I believe that an individual's level of happiness is largely self determined. However, to be practical about it, we are also influenced by our own inherent personality traits and by our interactions with the world around us. Here are a few things that I have working in my favor- traits and experiences that just make it a little easier for me to live a contented life:
  • Good internal wiring. I have a favorable genetic makeup for dealing with situations like this. Thanks Mom and Dad.
  • I have an incredible support system. It starts with my wife, and includes other family, friends, and medical professionals. My support system also includes my online MS friends, almost none of whom I’ve actually met face to face. (This is even more true today than three years ago)
  • I watched and learned as my mother endured similar challenges with incredible grace and courage. Her disability was due to a sudden accident when she was 35 years old and I was only 5. Her spinal cord injury was in her cervical spine. My primary lesion load (area of disease activity) is in my cervical spine, in almost the exact same location as my mother’s injury. The longer I battle this disease the more my symptoms resemble hers. I know. It’s freaky.
  • I have some level of financial stability. I'm not wealthy, but I might not be so happy if I was cold or wet, or worried about where my next meal would come from.
  • Although I'm often fatigued, I am not in much pain, and I rarely feel "sick".
  • I have widely varied interests. When I can no longer enjoy one activity, there is another activity on my list that I can take up (i.e., blogging).
  • I have the ability to enjoy sedentary pursuits. If this had happened to my hyperactive wife, for example, it would have been a significantly greater challenge.
2010 07 041I readily admit that I have a lot of things going for me that many disabled folks don’t have, evidenced by the list above. So I’m not here to say that I have a formula that every disabled person can follow to achieve true happiness. In fact I can't say with certainty that I'd still have this positive attitude under any circumstances. I'm just here to get the conversation going.

The reason I am blogging now, and never have blogged before now, is that as of May, 2009 I have lots of time on my hands and need something fun, interesting, and useful to help fill my day. After 8 years of getting up and going to work with MS, it finally got to the point where I could no longer do my job. If you have not read the About Me section on the right hand sidebar yet, please take a minute to do so.

Here are some desirable potential outcomes of this blogging adventure, in no particular order:
  1. I will connect in a variety of ways with people who I don't currently know. (big time)
  2. This blog will stimulate some interesting conversations on a variety of disability related topics. (indeed, it has)
  3. This blog will have any sort of positive impact on some of the folks who visit it. (maybe one or two)
  4. I will leave a legacy of writing that will outlive me, so that my descendants will understand what life was like for their disabled ancestor. (maybe too much writing)
  5. The process of maintaining the blog will be in some way therapeutic for me. (no doubt about it)
  6. I will come to understand myself better. (yup)
  7. Those who know and/or love me will come to understand me better. (since I'm kind of a quiet introvert, this has no doubt been the case)
  8. I will advocate for the disabled community: raise awareness, articulate our plight, help facilitate change (I don’t know how articulate I’ve been)
  9. Some media giant will buy my blog and I will get rich. Ha, that is rich. (Still waiting)
Here is one undesirable potential outcome of this blogging adventure:
  1. In the process of organizing, acknowledging, and posting my thoughts here, I will come to my senses and realize I’m completely screwed, and change the name of this blog from “Enjoying the Ride” to “Life Sucks- Why Bother?”. (Although my introspection has not sent me off the deep end, I must admit that some of the pieces that I've written have provided a dose of reality)
Let’s just get this party started and see where it takes us. Thanks for visiting. My hope is that this blog will be more of a conversation than a presentation, so please feel free to use the "comments" option at the bottom of each posting to give feedback. Also, please feel free to share the http://www.enjoyingtheride.com/ link with anyone who you think might be interested.

It’s more than 200 posts later, and I'm still blogging, although sometimes I get lazy and just re-run old shit Smile

Wednesday, June 6, 2012

It's NOT the Economy, Stupid

P Economy
(Photo credit: Wikipedia)
Of course, the phrase goes, "It's the economy, stupid," regarding what really matters in a presidential election. In the months leading up to the vote we are subjected to endless debates about social issues, about the size of government, about all sorts of philosophical differences between the Republican and Democratic candidates. Yet, in the end, none of that matters. If the economy is headed in a positive direction, the incumbent, or the representative of the incumbent party, wins. If the economy is in decline, the challenger wins.

Above all else, we want the government to provide us with economic prosperity. Yet, that’s something that it is incapable of providing. And since our president is but one cog (although a significant one) in the vast American government apparatus, which is but one cog in the multifaceted American economy, which is but one cog in the complex global economy (about 25%), we are selecting our presidents based on a fallacy.

Wake up America! Think a little bit before you vote. The candidate on the favorable side of the current economic situation, usually there by pure luck, will spend an inordinate amount of time asking the question, "Are you better off today than you were four years ago." Don't bite!

It's not like the economy is a ship, and the president is its captain. It's not even like the economy is a corporation, and the president is its CEO. It's more like the economy is a herd of cats, and the president is their shepherd.

To clarify, I will admit that certain government policies are probably better for our economy in the long term than other policies. However, to give sitting presidents, or their political party, the credit or blame for the economy as it exists at the end of a 4 or even 8 year term is an absurd oversimplification.

Please don't confuse this post for a thinly veiled defense of President Obama, given the apparently stalled economic recovery. I also felt this way with John McCain four years ago. He had a lot of good things to say, but in the end it didn't matter. The incumbent was a Republican, and McCain was a Republican, and the economy was in a tailspin. End of story.

I encourage you to become a sophisticated voter, if you aren't already. Sure, you should consider the economic philosophies of the candidates, but keep in mind that the president is more likely to influence education policy or the makeup of the Supreme Court, for example, than he or she is to affect your wallet in the next four years. It's nice to think otherwise, because it's always comforting to imagine that someone is in charge, but that's just an illusion.
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