CCSVI (and Me) on the Radio, and an NMSS CCSVI Research Update

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Last October, a reporter from radio's version of Public Television, National Public Radio (commonly referred to as NPR), conducted a telephone interview with me about CCSVI. I came to her attention because of the many posts on CCSVI that have appeared on this blog, in addition to the fact that I'd undergone CCSVI treatment in March, 2010. A full list of my CCSVI posts appears in the left column of this website, under the heading "CCSVI Related Posts".

Originally, the NPR piece was supposed to air on November 1, but the air date was pushed back pending further research being done by the reporter, Gretchen Cuda Kroen. I was told the completed piece would run sometime early in 2011, but was never given a firm air date.

Low and behold, this morning my phone began to ring quite early, with friends and family reporting that they had heard me on the radio. As I have steadfastly sworn off the morning hours since MS forced my "retirement" from the working world, and I tend to rise at the crack of noon, I was happy to learn that the report was available on NPR's website (click here). I was quite honored to find that the other two interviewees in the piece are both highly distinguished physicians conducting very important research on CCSVI, Dr. Robert Fox of the Cleveland Clinic, and Dr. Robert Zivadinov of the Buffalo Neuroimaging Analysis Center. All I did was have a catheter snaked through my jugulars...

Just a few comments on the report…

While it's fantastic that CCSVI is finally getting some media attention here in the United States, I think the report overstated some of the hazards involved with undergoing CCSVI venoplasty. It talks about "several patients" dying from blood clots resulting from the use of stents in their jugular veins. In truth, we know of one patient who died of an aneurysm most likely brought on by the anticoagulant drugs she was put on post procedure, and another who did die from a clot that developed in an implanted stent. The use of stents in treating CCSVI has come to be a cause of concern to many of the doctors currently doing the CCSVI venoplasty procedure, and many, if not most, are now primarily using balloon venoplasty in treating patients. Thus far, no patient deaths have been attributed to balloon venoplasty, although cases of thrombosis (clotting) and restenosis (surgically opened veins collapsing once again) are acknowledged problems.

The piece quotes me as saying that I wished I had waited for more research to be done before undergoing the procedure. While this is true, it is not due to safety concerns, but rather to the fact that mine is a complicated case, and the techniques being used to treat CCSVI are in a constant state of evolution. Procedures being done now are much different than those done only six months ago, and those done six months from now will without doubt be all the more sophisticated. This is why I've recommended in previous posts that patients with milder and less aggressive disease might want to consider holding off on getting the procedure done, because their chances of longer lasting success will certainly increase with time. I do agree with the piece's warnings about medical tourism, because many patients have indeed spent large sums of money, and traveled many thousands of miles, only to find that if they did get benefit from the procedure, it was unfortunately temporary. It's also important to remember that a substantial number of patients do not get any benefit at all from the procedure, and expectations must be kept realistic.

One factual error included in the piece is that Dr. Zivadinov believes that the venoplasty procedure is unsafe, which is clearly not the case. His research group at BNAC is currently conducting a treatment trial which recently increased the number of patients included, a strong indication that he does not consider CCSVI treatment as prohibitively dangerous. I contacted a representative from BNAC, and they assured me that Dr. Zivadinov in no way intended to infer that CCSVI venoplasty is a hazardous undertaking.

It would've also been nice to have heard from a patient who, unlike me, had experienced real benefit from CCSVI treatment, as many have. Since the piece is only 5 1/2 min. long, I'm sure the reporter was limited in what she could pack into it, and we all know that a full discussion of CCSVI and its related issues could only properly be covered in a much longer exploration. Hopefully, this report will be the tip of the iceberg, and will spur the rest of the US media to finally start doing its job, and get quality information out to the public at large. The mainstream media's complete silence on this issue has been egregious, but I wouldn't hold my breath in anticipation of an onslaught of reporting.

In other CCSVI related news, the National Multiple Sclerosis Society released its first six month report on the CCSVI trials it funded this past summer (click here). Though the report does not contain any trial results, it does provide much information on the nuts and bolts of the projects funded. Although it's unfortunate (in my opinion) that none of the NMSS funded projects is a treatment trial, it is encouraging to read that many of the researchers involved have undergone training in the specific methods used by Dr. Zamboni to detect CCSVI, and have acquired the specialized equipment required to do so. I look forward to the Society's next research update six months from now, which hopefully will include some of the initial data being gleaned by these studies.

Latest MS Drug News; Much of It Bad…

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There’s been a spate of news in the last two weeks regarding existing and proposed MS drugs, much of it on the negative side. Several drugs have been rejected by the European regulatory agencies, and another has seen the specter of its deadly side effects continue to rise.

Although much maligned by the MS activist community, many of the drugs prescribed for MS have in fact improved the quality of life for many of the patients taking them. Although exorbitantly expensive, not targeted at the root cause of the disease (which remains unknown), and of help to only a portion of the MS population, the approved drugs have been shown to reduce the rate of relapses in some RRMS patients, though there is much question over whether they actually slow the insidious progression of the disease.

The injectable CRAB drugs (Copaxone, Rebif, Avonex, and Betaseron) have been demonstrated in clinical trials to significantly reduce relapse rates in about one third of patients taking them. Copaxone has a relatively mild side effect profile, but the other three compounds, all forms of beta interferon, often make those taking them suffer flulike symptoms for a day or two after dosing. For the patients in whom they work, though, a significant drop in relapse rates can substantially lessen the impact of the disease on their lives. Unfortunately, after over a decade of use, it's still not clear whether or not these drugs have any influence on the progression of disability. A recent report out of Great Britain challenged the notion that the CRAB drugs positively impact progression (click here), but other studies (click here, here, and here) seem to support the claim that these drugs do at least something to slow progression.

A newer generation of MS drugs, including Tysabri, Rituxan, and the recently approved (by the FDA) Gylenia offer a marked uptick in efficacy in both the reduction in relapse rates and MS symptoms, as well as the proportion of the patient population for whom they are beneficial . Unfortunately, along with this increased efficacy comes an increased severity in their potential side effects, which can include deadly brain infections and cancer. These drugs, too, do nothing to address the underlying cause of MS, and work by profoundly altering the workings of the very complex and little understood human immune system, the consequences of which, over the long-term, have yet to be seen. Still, the sometimes dramatic improvements experienced by some patients taking these drugs have led many to be extremely reticent to give them up. In the case of Tysabri, I personally know several patients who, after several years on the drug, have tested positive for the virus that causes PML, a ghastly brain infection, but still refuse to come off Tysabri because of the positive impact it has had on their lives.

Unlike some other MS voices on the Internet, I'm unwilling to label the current crop of MS drugs "snake oil", simply because of the positive influence they do have on the lives of many patients. Certainly, they do nothing to cure the disease, and I do doubt their ability to significantly impact the progression of MS, but I know of enough patients whose lives have remained relatively productive in large part due to these medications that I can't help recognize their value. The actual financial cost of these drugs is mind-boggling, with the price of the newly approved Gylenia (the first oral medication approved for MS) coming in at almost $50,000 per year, and I abhor the fact that MS has been turned into the goose that continues to lay the golden egg for many pharmaceutical companies, but the apparent positive effect of these compounds shouldn't be ignored. Before the introduction of the CRAB drugs, MS was known among physicians as a "diagnose and adios" disease, one with very little that could be done to combat it. The advent of these drugs, no matter how flawed they are, has at least put some arrows in the quiver of those trying to fight MS.

Unfortunately, all of the drugs currently approved for MS have only been shown to work on patients suffering from the relapsing remitting form of the disease; those of us suffering from the progressive forms remain shut out from any even nominally effective treatment. Very few drugs have even been trialed for use on progressive MS patients, but recently at least some attention has been turned to the plight of those suffering from SPMS and PPMS (click here).

Okay, enough of my bloviating about the current state of MS drugs. Here's a rundown of the latest news regarding MS pharmaceuticals. The fact that many of the articles linked to come from financial websites speaks volumes as to the sad state of affairs regarding MS as Big Business:

• Biogen, the makers of Tysabri, released its monthly report on the rate of PML (a devastating brain infection) in patients taking the drug (click here). When first starting Tysabri therapy, patients in the United States are enrolled in what's called the TOUCH program, designed to carefully track them for signs of the infection. The risk of PML infection as a result of Tysabri therapy has long been touted as 1000:1. The statistics released earlier this month show that the infection rate for patients taking Tysabri for less than two years falls well within that figure, but starts to rise dramatically once patients surpass the 24 month mark. The incidence of PML in long-term therapy is now stated at 2.13 per 1000, and the trend suggests that the longer patients are on Tysabri, the higher their risk of infection. After first being introduced in 2005, Tysabri was quickly withdrawn from the market when the threat of PML became known. It was reintroduced in the second half of 2006; therefore, the majority of patients taking it have yet to reach the "danger zone". As I stated previously, many patients are loathe to stop Tysabri after experiencing sometimes dramatic relief from their MS symptoms while on the drug. As the PML count increases, many patients now on Tysabri will have to grapple with some very difficult decisions.
• The European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) recommended against the approval of the oral drug Fampyra (click here), which in North America is called Ampyra. Ampyra, approved by the FDA in 2010, is the only drug thus far approved strictly for the symptomatic relief of MS. The compound increases walking speed in approximately 1/3 of the patients who take it. Some patients on Ampyra also report an overall increase in muscle strength. In recommending against the drug, the CHMP said that it "was not convinced that Fampyra’s small effect on the walking speed was a meaningful benefit for patients. The effect on speed could not be linked to meaningful improvements such as better coordination, balance or stamina or increased range of action. The Committee was of the view that the medicine’s uncertain benefits did not outweigh its side effects which included pain, dizziness, paraesthesia (unusual sensations like pins and needles) and problems with balance, as well as symptoms similar to those of multiple sclerosis that could impair the patient’s ability to walk. The Committee also noted the lack of adequate long-term data on the medicine’s benefits and safety as well as data on some groups of patients, such as the elderly and patients with epilepsy or heart problems. The CHMP concluded that the benefits of Fampyra did not outweigh its risks and recommended that it be refused marketing authorisation."
• The CHMP also recommended against the approval of the experimental oral MS medication Cladribine (click here), marketed by the giant drug company Merck. Cladribine has been used in IV form as an anticancer agent since the mid-1990s, with known possible severe side effects. Reformulated in an oral form and named Movectro, the drug went through a full trial regimen for use in RRMS patients, and was shown to reduce the rate of MS relapses and possibly impede the speed of disease progression. In deciding against the drug, the CHMP had concerns about the medicine’s safety. "An increased number of patients with cancer were observed in trials with Movectro, which may indicate an increased risk of cancer over time and with increasing doses. The Committee also noted that the benefits and the most appropriate dosage for treatment had not been fully established in patients who were expected to use the medicine. Therefore, at that point in time, the CHMP was of the opinion that the benefits of Movectro did not outweigh its risks and recommended that it be refused marketing authorisation." The drug will be up for FDA approval later this year, and it will be interesting to see if the FDA follows their European cousins’ decision.
• The CHMP recommended for the approval of the oral MS drug Gylenia, formally known as Fingolimod or FTY 720 (click here). This drug has already won approval from the FDA, and should be hitting the market sometime in the first half of this year. Gylenia is a powerful drug that greatly alters the workings of the human immune system. The compound traps the immune system's T cells in the lymphatic system, thereby keeping them out of not only the central nervous system, but the rest of the body as well. As one neurologist told me, "Tysabri keeps the cops out of a certain neighborhood, but Gylenia keeps them locked in the police station". While many patients relish the thought of giving up their injections or monthly infusions for the simplicity and pain-free action of taking a daily oral tablet, the mechanism of this drug should give pause. Though it has not yet reached the market, it is believed that neurologists will initially be quite careful in prescribing the drug. Interestingly, Gylenia is being tested as a possible neuroprotective agent, so the drug may have a double-barreled effect. It would be wonderful if science could isolate Gylenia's neuroprotective properties and develop a compound that shields nerve cells from the MS disease process, but that development seems far off in the future.

As an MS patient, I find it incredibly frustrating that millions upon millions of dollars are being spent researching, developing, and marketing pharmaceutical compounds that do absolutely nothing to actually cure the disease, but in effect turn patients into indentured servants of Big Pharma. Unfortunately, our medical research model has evolved into a highly dysfunctional beast, one which all too often ignores real patient benefit in favor of the possibility of huge financial gain. The aberrant immune reaction seen in MS is essentially a symptom of an as yet undiscovered disease cause. If even a fraction of the research dollars spent by Big Pharma on drugs designed to suppress or modulate the immune system were instead spent on finding this unknown cause, we might actually be on the road to a cure for this damned disease.

One can only hope that the beliefs of the most fervent CCSVI advocates hold forth, and vascular abnormalities do prove to be a vitally important part of the MS disease process. At the very least, may investigations into CCSVI finally wrench the focus of MS research away from the concept of autoimmunity and onto a model of MS as disease in which an immune system gone awry signifies greater ills still hidden, and at long last brings those hidden ills to light.

Can I get an Amen?

Video of Dr. Michael Dake's CCSVI Presentation at Brandeis University

On January 10, 2011 the CCSVI Alliance sponsored a presentation by Dr. Michael Dake of Stanford University entitled "CCSVI and the MS connection". The event was held at Brandeis University, in Waltham, Massachusetts.

Dr. Dake was the first Interventional Radiologist in the United States to treat MS patients for CCSVI. On January 10, he presented a broad overview of the evidence supporting a connection between the vascular abnormalities collectively known as CCSVI and Multiple Sclerosis. His presentation was followed by an informative question-and-answer session with the audience.

I'm on the Patient Advisory Board of the CCSVI Alliance, and, since I made my living in the TV and video business before MS forced me to "retire", I edit most of the videos that the Alliance sponsors. Below are videos of Dr. Dake's presentation, which I think you'll find quite interesting and informative. The video is broken into two parts, each about 10 minutes in length. The first includes highlights of Dr. Dake's prepared presentation, and the second is comprised of the question-and-answer session that followed.

Please check out the CCSVI Alliance's website (click here) for more videos and comprehensive information on all things CCSVI.

Part One:

Part Two:

Bits and Pieces: Including NMSS Neuroregeneration Webcast Recap

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Well, it's time for another edition of Bits and Pieces, my semi regular compilation of various items, mostly related to MS, which have recently caught my attention. First though, a quick note about some housekeeping I was forced to do here on Wheelchair Kamikaze.

Due to an onslaught of spam being left in the comments section of older posts, I've been forced to institute the "post moderation" option made available by Blogger, the host of this site. In plain English, this means that all comments left on older posts will have to get my okay before they are officially posted to the site. I resisted this option for a long time, primarily because I don't believe in censoring anybody's opinions, but also because I'm too damn lazy to have to okay every comment left on older posts. Unfortunately, the spamming efforts of one organization hawking CCSVI testing and treatment have forced my hand. This organization, The CCSVI Clinic (click here), was recently cited as being a something of a scam in the Canadian press (click here).

UPDATE: I've been in contact with the CCSVI Clinic, and I've been assured that the spamming is not coming from anywhere within their organization. They are actively trying to find the source of this electronic harassment, and have recently been the victims of vandalism, slander, and hacking. Hopefully they will be able to resolve these issues quickly, and to their credit, the individuals I've spoken at the organization with have been forthright and genuinely helpful.

And now, on to our smorgasbord of Wheelchair Kamikaze delicacies…

· On 01/11/11, the NMSS held a one-hour webcast entitled "Repairing the Nervous System in MS: Progress and Next Steps". The webcast featured four experts in the field, and it is well worth watching the archived version, or reading the transcript, both of which are available on the NMSS website (click here). Much stimulating information was featured, including info on evolving strategies for stimulating the body's own resident stem cells to repair damaged nervous system tissue, as well as the use of adult and embryonic stem cells to affect these same kind of repairs. Also discussed were the efforts currently underway of developing drugs that will protect nerve cells from the damage that the MS disease process inflicts, and perhaps stimulate myelin repair. One such drug currently under development by Biogen blocks the protein Lingo-1 (click here), which inhibits the body's production of myelin. Phase 1 human trials of this drug are currently underway. Even if radical new approaches prove to be able to stop the progression of MS (say, like, CCSVI) the repair and regeneration of the nervous system will still be of primary importance, as stopping the progression of the disease alone will not restore function to patients with long-term nervous system damage.

Okay, that's the good news. The bad news is that the best case scenario for all of these wondrous developments is that they are at least 5 to 10 years away from being available to the general patient population, far too long for most of us to wait. Not only do trials and testing take time, but getting proper funding for large-scale trials is a daunting task. There is a gaping chasm in our medical research model between developing innovative treatments in the lab and bringing them to market, and this fault is so endemic to our system that it's often referred to as "the valley of death" by medical researchers. Organizations such as the Myelin Repair Foundation (click here) are feverishly trying to tackle this tremendous problem, but the simple fact is that the current research model is horrifyingly dysfunctional, which I wrote about extensively in a previous post (click here).

· It's long been known that MS attacks women in greater numbers than men. Actually, this is only true of Relapsing Remitting Multiple Sclerosis, as Primary Progressive MS attacks men and women in equal numbers. Regardless, new research into the genetics of the disease reveal that women are more likely than men to carry a gene variant associated with Multiple Sclerosis (click here). The study finds that women are 1.41 times more likely to have a MS related gene mutation in an area of the human genetic code linked to MS. Additional information (click here) showed that women are also more likely to pass the "MS gene" onto their female children, which further explains the female: male difference seen in the disease. It's thought that this gene variant is not naturally occurring, and rather comes about through an interaction with environmental factors. This change in genetic structure due to interaction with the environment is a relatively new discovery, and is referred to as epigenetics. Some of the environmental factors that might contribute to an MS gene mutation could be stress, diet, smoking, vitamin D exposure, or exposure to toxins or infectious agents. Interesting stuff…

· In this curious bit of news, a 53-year-old man admitted to dressing up as a Canadian Mountie as part of a sexual role-playing game (click here). Normally, although well worth reading, a news item such as this wouldn't warrant inclusion in Bits and Pieces, except that the first line of the article notes that the man is a Multiple Sclerosis sufferer. This isn't mentioned anywhere else in the piece, and I have no idea how it relates to this gentleman's predilection for donning the uniform of a Canadian law enforcement officer in an attempt to pick up men. He was caught in uniform three times, twice after taking his Mountie dressed self to police stations, on one occasion to drop off a box of doughnuts. Our MS stricken mock Mountie now faces the possibility of six months in prison. So, if there is a lesson to be learned here, it is that if by chance you find yourself strangely drawn to dressing like a character in Bullwinkle for the purposes of sexual satisfaction, don't use your MS as an excuse. It won't fly, at least not in Canada.

· In another odd bit of MS related news, an MS riddled human brain is being featured in an exhibit at a London art gallery (click here). A British member of Parliament was quoted as saying, "this is a disrespectful way to treat the human body and is unacceptable.” Many others simply commented, "yuck!" Personally, although I'm no art critic, I find it hard to understand how the brain of an MS patient could be considered a work of art, unless of course the lesions on that brain formed a portrait of Elvis Presley, in which case I'd want to buy it and keep it permanently displayed our dining room table. I'm pretty sure that Karen wouldn't let me, though…

· On a more serious note, a batch of alcohol pads possibly contaminated by bacteria was included in kits distributed to patients using the MS drug Copaxone (click here). If you are on Copaxone, or any injectable drug for that matter, please check to see that your alcohol pads were not manufactured by a company called Triad, or use any of these names on their packaging: Cardinal Health, PSS Select, VersaPro, Boca/ Ultilet, Moore Medical, Walgreens, CVS, or Conzellin.

· As many of you know, I'm an avid amateur photographer, and shoot with a camera mounted to the arm of my wheelchair (please see my photo gallery on the left column of this blog). Here's a very cool video made up of over 30,000 individual photos, shot with a technique called tilt shift photography, which involves the use of special lenses. The effect of this technique makes every day scenes look like they are parts of miniature dioramas, and this video of a day in the life of New York City is, to me at least, is the very definition of "eye candy". Thanks to my buddy Weeble for sending me this video…

Live Webcast, "Repairing the Nervous System in MS: Progress and Next Steps": Tuesday, 01/11/11, 2 PM ET

The National Multiple Sclerosis Society is holding a live webcast on Tuesday, January 11, at 2 PM, focusing on the latest research efforts in neurorepair and neuroregeneration, two of the holy grails of MS investigation. (Click here for more info and to register)

This topic should be of extreme interest to all MS patients, regardless of your feelings about the NMSS, mainstream neurology, and CCSVI. Even in a CCSVI best case scenario, in which the hypothesis does turn out to be the primary cause of MS, damage done to the central nervous system will still need to be repaired to restore functionality to the patient once disease progression has been stopped. Damaged nerve cells rarely if ever repair themselves, so strategies for stimulating such repair are vital.

This webcast will feature the following panel of world-class MS researchers:

Dr. Peter Calabresi, Professor of Neurology and Director, Johns Hopkins MS Center, Baltimore, MD;
Protecting the nervous system from MS damage, novel ways to track repair

Dr. Ian D. Duncan, Professor of Medical Sciences at the University of Wisconsin, Madison;
Novel imaging technologies, transplanting cells to promote repair

Dr. Charles ffrench-Constant, Chair of Medical Neurology, University of Edinburgh, UK;
Transplanting repair cells and stimulating natural nervous system repair

Dr. Gavin Giovannoni, Chair of Neurology at Barts and The London School of Medicine and Dentistry,
Screening molecules for their protective properties and conducting clinical trials

As is noted above, some very interesting topics will be discussed, including the use of stem cells to stimulate nervous system repair.

(Click here) to find out what time the webcast will be held in your time zone. Choose "America/New York" in the "From Time Zone" window.

The Acorn and the Tree

Image by 'PixelPlacebo' via Flickr

Before my diagnosis, I might have been the last person you'd have expected to not crumble under the relentless hammering of progressive Multiple Sclerosis. I was quite the neurotic, and although I'd made much progress in learning how not to be self-defeating (with the help of a few decades of therapy) and was able to function at a high level both socially and professionally, the inner Marc waged a perpetual battle at keeping my natural anxious tendencies in check. At work I was somehow always calm in a crisis, and perhaps this was a harbinger of how I'd react to a true personal calamity, but my emotional past was littered with quite a few messy episodes following heartbreaks and other blows to the ego. Whenever I would obsessively imagine myself getting a dire medical diagnosis, the scenario in my mind did not end well.

In puzzling over the contradiction between my expected emotional reaction at being confronted with a serious illness and the reality that has come to pass, I know that I grew up with a role model to whom I owe not only my relative emotional stability in the face of chronic illness, but also life itself: my mom. Mom developed type I diabetes while she was pregnant with me, and unlike most cases of gestational diabetes, my mom’s did not go away after she gave birth. At the age of 23, with her first (and, it would turn out, only) child as much of a handful as any infant, my mom also had to deal with a potentially life-threatening illness that not only required the mental toughness to make sweeping lifestyle changes, but to also give herself two injections of insulin a day. In fact, the disease changed the very act of birth itself, as due to her diabetes I had to be delivered by cesarean section.

My mom and dad divorced when I was three years old, and for much of my youth I often felt like it was me and mom against the world. My dad was always there for me, and I spent most weekend days and one evening a week with him, but in my day to day life it was Marc and mom, through sunshine and storm. I honestly don't think I ever saw my mom let her disease get her down; in her chest beats the heart of the lion (an occasionally goofy lion, but a lion nonetheless). Growing up, watching mom inject herself with insulin twice a day seemed no stranger to me than eating breakfast or getting tucked into bed. I remember often playing with mom's syringes, sans needles, taking them apart, using them as little squirt guns, and generally including them in my huge collection of toys.

My mom is a bit of a character, and soon after the divorce, we moved in with my grandmother and aunt, who were quite colorful in their own right. There are many adjectives that can be used to describe my family, but boring is definitely not one of them. My grandmother was 4'11" full of piss and vinegar, a chain-smoking scallywag with a well-earned gravelly voice and mischievous streak wider than she was tall. My aunt was (and still is) quite the fanciful character as well, ill at ease in the real world but exceedingly comfortable in an alternate reality filled with plot lines taken from long forgotten movies and flights of whimsical imagination that the little me found thrilling. In my aunt's world, almost anything was possible, from the power of magic incantations to the notion that a super robot was due to arrive at our little apartment by special delivery any day now, an illusion that I faithfully believed for several years, despite the fact that no robot ever showed up at our door. No matter, the anticipation of the robot was a thrill in itself. We might have been decidedly lower middle class, but I bet most of the kids on Park Avenue didn't spend several years in breathless anticipation that Gigantor (click here) was about to be their best friend.

As I grew older, life with mom did not always follow the path of least resistance. She remarried and we moved away from my aunt and grandmother, though they remained a large part of my life. Mom's second marriage, to a man I never really gave a fair chance, petered out after a few years, and once again it was just the two of us. During her second marriage, mom was felled by two diabetic comas, during which she was hospitalized for extended periods of time. Though I knew that mom was very sick, I was, at age 9 or 10, never told the gravity of her situation, which at times was quite dire. I vividly remember coming home for lunch one afternoon when I was in the fourth grade, on a day that mom had returned from the hospital after one of her coma episodes. When I walked in the front door, mom fell to her knees and hugged me close, sobbing. Despite the often tumultuous nature of our lives, and my mom's own hardships, I think that instance may have been the only time I ever saw my mother cry, and the tears she shed were those of joy. She had been so sick she that thought she was surely dying, and would never see me again.

I wasn't an easy kid to raise, my emotional maturity never keeping pace with my intellect, and among my host of quirks was an extremely well-developed case of hypochondria. If there was a Junior Olympics for young neurotics, I would have easily won the gold in the hypochondria competition. By the time I was 10 years old I had wrestled with several cases each of hepatitis, stomach cancer, leukemia, and in one very dramatic instance, after getting hold of a copy of the novel Papillion, a frightful bout of leprosy. I wasn't a kid who kept such fears to himself, either. Mom was constantly pestered with my asking her to check the whites of my eyes for jaundice or my forehead for fever, and I drove her so crazy during my attack of leprosy that she finally took me to the pediatrician, who had himself quite a hoot over my self diagnosis. No, he assured me, my nose was not about to fall off.

One particular hypochondriac specialty of mine was brain tumors, and at least once a month I would plaintively wail, "Mom, I think I have a brain tumor!", to which she would always reply, in full sarcastic mode, "First you need a brain…" Then we'd both laugh, as was our ritual, and I'd tuck away my brain tumor concerns for another week or so. Looking back, maybe I wasn't such a hypochondriac after all. Perhaps I sensed that there really was something wrong with me, a something that finally manifested itself several decades later as Multiple Sclerosis.

We never had much money, mom almost never had the best luck in romance or business (although, despite her illness, she was an extremely hard worker), and she sometimes didn't make the best life choices, but through it all the memories of my youth are infused with an overwhelming sense of love and laughter. Mom's lust for life is palpable, and her charisma always assured that she would have a gaggle of spirited and wacky friends around to keep her company and join her for nights out on the town. One of the traits I inherited from mom is a love of the nightlife. She and her friends frequented many of New York City's 1970s hotspots, and although diabetes kept her from consuming alcohol, she invented a nonalcoholic drink she called a "Shmendrick", the recipe to which many a bartender around town made sure to commit to memory, lest they suffer the good-natured wrath of mom's fiercely loyal pals.

Even in the face of her sometimes debilitating illness and a life filled with hurdles, mom has never lost her sense of optimism, or her ability to laugh through adversity. A little diabetes was definitely not going to burst her bubble; it just gave her all the more reason to fight, and laugh, that much harder. Our apartment was always filled with music (mostly Streisand and show tunes, and thus my heterosexuality makes me living proof that homosexuality is a function of nature not nurture), with mom more often than not belting out lyrics as she washed the dishes or did other household chores.

At about the same time my MS started making itself apparent (2003), my mom developed Parkinson's. In the intervening years, we've both watched our mobility decline precipitously. Since mom lives in Florida, and I'm in New York, we've been able to physically visit with each other less and less with each passing year, as our illnesses have made traveling more difficult. Still, we talk daily by phone, and although at my best I handle my illness with a Zen stoicism, mom always manages to find the humor in our situations, often joking that between the two of us we couldn't come up with one good body, or that in a race across the living room we could be timed with a calendar. I know that my illness has taken a greater emotional toll on her than her own, and when clouds of doubt darken my horizon, hurricane mom is always just a phone call away, ready to blow those clouds away.

The combination of Parkinson's, diabetes, and advancing years still haven't been able to keep mom down, as she and her friends are frequent visitors to the restaurants and casinos that thrive in South Florida. Mom consciously taught me a set of essential foundational values, always stressing the importance of honesty, loyalty, and integrity, but perhaps the most important lessons I learned from her she continues to set by example, in the form of an indefatigable spirit, and the resolve to never let circumstances dictate your ability to experience joy.

Thanks, mom…