Category Archives: MS and Bill Walker

Multiple Sclerosis by the Numbers

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100_0572     Worldwide the number of people that have been diagnosed with Multiple Sclerosis is somewhere between 2.3 million and 2.5 million. In the United States there are roughly 450,000 to 600,000 individuals that have been diagnosed with MS which mathematically works out to 1 in 4 or 25% of all patients world wide. And that number is quite simply staggering when you consider that there are 7.5 billion, give or take a few million, people now living in this world. Which if my math is correct means that about 3 out of every ten thousand people will be diagnosed with MS worldwide. In the US that number works out to roughly about 2 out of every thousand. I admit these are very rough numbers but there close enough to show that the incidence of MS in the United States is much more prevalent then anywhere else on the planet.

     Let’s look at this in a different and even more startling way. If we take the number of US diagnosis’ and divide that into the total number of people afflicted with MS worldwide we find that 1 in 4 or 25% of all people with Multiple Sclerosis live in the United States which definitely begs the question, why? Especially when you consider that we have roughly 5%, or one 20th, of the total world population, again I ask, why?

     When I worked through these numbers I did only the Multiple Sclerosis numbers that are easily found on the internet and I didn’t look into all other autoimmune disorders as a whole but I wonder if I did would they show a similar distribution of autoimmune disease in the US as compared to the combined world population?

     If my math is even close to being correct it strongly suggests that there is some kind of environmental trigger that is far more prevalent here in the United States then anywhere else in the world that’s the only thing that makes any sense. And in my opinion with this information it should not be all that difficult to determine what that environmental trigger really is which would answer a whole lot of questions about this, and perhaps other, disorders of these kinds and what kick starts these disease processes into over drive.

     What do you think? Make some noise whenever and where ever you can. I strongly suspect that we, who have these autoimmune diseases, are the canaries in the mine and are just the first people to succumb to an ever, and increasingly more polluted, and sick planet!

Bill Walker

MS and My Retinal Detachment

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     100_0548 I have Multiple Sclerosis and I have also had some pretty serious issues with my right eye lately which, surprisingly enough, have absolutely nothing to do with each other. First, over this last summer, I had a detached Vitreous which was terrifying in that I had floaters and all kinds of visual distortions that ultimately my body was able to correct on its own. And then a few weeks ago in early November I started to have what I thought was another round of the same detachment so I paid little attention to it until I started to lose about 60 to 70% of my vision in my right eye which sent me back to the eye doctor. And in this case it was a very good thing that I did as a Detached Retina I learned is a whole lot worse, seeing as it will eventually lead to going blind in that eye, if not corrected quickly.

     A scant 24 hours after my diagnosis I found myself going into the first of a two day procedure where they inject a gas bubble straight into your eye to push the retina back into place, which sounds gross, but isn’t nearly as uncomfortable as you might think. On the second day I was taken into the laser room where they shot a laser beam straight into my right eye to reattach, or weld would be more like it, the retina back into its proper location. As the Ophthalmologist worked on my eye he started to tell me just how lucky I was to have this happen now as opposed to ten years ago when this procedure was just in the very early phase of being developed. In other words, I probably would have lost the use of my right eye ten years ago and for many people once this occurs in one eye the likely hood of it happening in the other eye jumps significantly which is why I have to go back in two weeks to have the laser part of this procedure done again on a few weak spots in my left eye.

     And this procedure actually had a profoundly positive effect on my overall out look when it comes to also having MS, I started to consider just how fast science is moving and discovering new ways of treating and curing many health problems. If you’ve been reading all of the studies that are currently being done on MS and a wide variety of other Autoimmune disorders, as well as all diseases really, you start to think that it really is possible that we all may once again be able to hike up a mountain side or ride a one hundred mile marathon bike race without all of the ravages of these awful diseases holding us back.

     Don’t get me wrong, I certainly didn’t enjoy my Detached Retina experience by any means, but it did help me to find my faith in a medical system that I have quite often been critical of in the recent past. We will find a cure to Multiple Sclerosis in the near future, of that I’m absolutely certain. My Holiday wish for all of us is to see, and experience life once again to its fullest, without any adverse effects from this degenerative malady that we call Multiple Sclerosis!

 

Happy Holidays to all with hopes for 2015 being the year that we can truly see the beginning of the end of this disease. And, who knows, perhaps the cure has already been discovered and is just a clinical trial or two away from becoming a reality!

 

Bill Walker

MS and My Experience in a Clinical Trial

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Bill Walker

Bill Walker

Literally just months before I was stricken with my first major MS attack I quit my job to search for another position which meant giving up my health insurance and everything else in hopes of bettering my life. And as you probably have already figured out, this was not one of my best ideas and I paid for that mistake mightily. Let’s fast forward a year and a half roughly from that point to my diagnosis of a major disease with no insurance and no money to speak of to try and treat my illness. It became pretty apparent pretty quickly that without insurance I was going to have to be creative when trying to deal with the crushing news that I had Multiple Sclerosis and no way to financially deal with it. And then someone, I don’t remember who, asked if I had considered signing up for a Clinical Trial?

     When I first started checking out what and where I could go I was apprehensive about whether or not you needed to be insured before they would consider you, and when I found out that you didn’t need any insurance I was ready to do whatever it took to get signed up as it finally felt like something was going right in my life. A few phone calls was all it took to bring me to Virginia Mason Hospital in Seattle Washington and to Doctor Mariko Kita head of staff in the Neurology’s clinical trial’s department. It just so happened that they had two new studies that were just getting underway and in both cases the patient, me, was assured of getting a real drug and not a placebo as can often happen in one of these studies where a control group is always used to determine the efficacy of the drug, or drugs, that are being studied. After considering them both I choose the one that sounded a little bit safer and began the long question and answer process that you have to go though before even being seriously considered. And on the very next visit I was accepted into the study I wanted to participate in and shuttled off to my intake physical which is a real physical where you are probed prodded and lab tested for anything that could negatively influence the outcome of the study before finally being sent to EKG for a heart monitor test. I passed everything with flying stars and told when to return to start my study medication.

     In the study that I choose to participate in there were three groups the first one was the control group that received 20mg Copaxone and since this group was receiving a pre-filled daily dose there was no way they could use this group as a blind study group where the Doctors who were doing the study wouldn’t be able to tell the difference in results with the drug being studied which is often the case. The other two groups consisted of one that would receive the regular dose of 0.25mg Betaseron, now I think they have changed that to 0.30mg, every other day and the third group would get the increased Betasron dose of 0.50mg every other day. The study was a two year blind study between the two Beatseron groups to determine if the larger dose was more effective then the regular dosage. After the two years was finished I received the study results and found out that I had been in the regular 0.25mg dose of Betaseron group. And in the studies final conclusions it was determined that there was no statistical difference between the regular dose of Betaseron and the larger dose of Betaseron.

     My own personal conclusions were a bit different though once you consider that I had received thousands of dollars worth of medication and, for the most part, free health care for two years, my conclusion was a resoundingly positive winning scenario where I was happy to have played my part for science.

     However there are many things to consider before deciding to become a part of a Clinical trial. First of all many of these studies are done at University Hospitals which are almost always located in the heart of the biggest cities in the country which means, or at least in my case it did, an hour and a half drive several times a week in the beginning of the study and at least once every couple of months towards the end. And these studies are run on a very tight schedule so getting caught in traffic adds quite a bit of stress when you’re trying to make an appointment while also trying not to go postal on many of the idiots who seem to think that if they can just get ahead of you, it will be clear sailing to where ever they need to be.

     And when you finally get to the hospital there is another set of problems as many of these hospitals are mini-cities just in themselves, with the Neurology Department on the twentieth floor of one building, your blood draw at the Lab in a completely different building, and the MRI machine located in the basement of a third building a block away, and on some visits you may have to go to all three buildings before you’re done. And for the most part it’s really up to you to get to these separate locations on your own or with family help if at all possible.

     And the paperwork, oh yes, the paperwork, at the beginning of every study be prepared to receive a large notebook sized study manual that will outline the entire study from medication to exams and whatever you and everyone else including Doctors, Nurses, and Clinicians, are expected to perform. And because, this is really a contract, you are expected to read each and every page before you sign each and every page. And when that’s all done they close the deal with the scariest page of all which is the one that states that you understand that though every precaution has been taken to insure your safety there is always the possibility that something might go wrong and that by signing this document you are pretty much giving up all of your legal rights throughout the study and beyond. In essence, this page states that you’re consenting to be a lab rat with very few legal rights, but you’re also accepting the possibility that this study medication may also turn out to be the ultimate cure.

     With all of that in mind, would I ever consider being in another Clinical Trial in the future? The answer for me would be a resounding, “Yes”! I can’t think of a better way to help my fellow MS’ers then to put myself into this position to help find a cure to this monster of a disease. And if I could find one where the research included the study of stem cell injection with the possibility of repairing the damage to the myelin sheathing around my nerves I would be all in as this, in my opinion, seems to be the best path to finding a meaningful treatment or even an eventual cure for this debilitating disease. And if that ever happens, you all will be the first to know!

 

Bill Walker

MS and the Legalization of Marijuana

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Green Stop 7466 Mount Baker Highway Maple Falls Washington

    

    100_0472 I am ecstatic that I live in one of the two states, Washington and Colorado, where voters were progressive enough to take on the responsibility of legalizing marijuana. It was a long time in coming and the right thing to do in my opinion. It is truly ridicules to flood our jails because of smoking a weed when alcohol kills thousands of people every year through traffic accidents while heightening the incidence of domestic violence nationwide, and remains legal in every state.

     And unlike alcohol, marijuana can boast a number of positive outcomes that go 100_0473well beyond just getting high. Lately many people have been watching with great interest at a number of new studies using THC and other compounds in marijuana in the treatments of a number of different diseases. It’s been long understood that marijuana has a positive effect for cancer patients who are being treated with Chemotherapy drugs and its ability to help them both eat and ultimately digest food that is otherwise difficult for these individuals during periods of treatment. And lately other studies have shown marijuana’s ability to slow and even stop some cancers ability to replicate and grow after being treated with many of the compounds found in pot. And these studies need to be continued without the fear of government intervention as has always been the case in the past when researchers wanted to do more complex research on how cannabis affects certain disorders like Parkinson’s and epileptic seizures, which, by the way, is showing extremely positive results in both of these disorders in newly released research studies.

    100_0476 In fact, I can personally think of two studies that I would like to see done with regards to Multiple Sclerosis if they aren’t being done already? My experience with marijuana and MS is that cannabis has a very positive effect on all forms of pain reduction with regards to MS and also greatly reduces the amount of daily nerve spasticity that is so commonly experienced by MS patients. And though I personally don’t relish the high that marijuana provides I also must admit that it does at least offer a couple hours of relief from a disease that otherwise is a constant annoyance every second of every minute of every hour of every day three hundred and sixty five days of the year.

     I have been asked on a few occasions why I never got a marijuana medical green card to purchase the drug as a medication for my own disease and the answer was always because I felt three or four hundred dollars was an absurd price to pay for something that I only used on a rare occasion. And now with pot being legal in the state of Washington I no longer have to worry about this additional cost to my wellbeing.

     So once again, thank you Washington State and Colorado State for being the forward thinking people that you are. And I certainly hope that this experiment in legalization both works and is replicated nationwide as time goes on. It is time for a gentler drug policy in the United States because the war that has been waged on drugs up to this point is just not working and new ideas are needed now so we can continue to move forward!

 

By Bill Walker

 

 

  1. I am currently on disability but would greatly appreciate finding either a writing or research position with regards to either Multiple Sclerosis or the environment where I could supplement my monthly income. If anyone is aware of either a permanent position or a freelance position where I could work from home I would love to hear from you. My contact email address is contained in my resume at the top of this blog page.

Thank you!

MS-A Cold-Zinc-A Difficult Choice

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How do spiders do that? Those two trees are at least ten feet apart.

     Recently I woke up with all the tell tale signs of an emerging cold, you know, the scratchy throat, the slightly more then usual MS weakness and tightness in my muscles a little sniff here a little sniff their with a sneeze or two thrown in for good measure. And it’s in these very early moments of an oncoming cold virus where I have to make a very difficult health choice. If I hit a cold hard as soon as I notice it coming on with mega doses of zinc I can almost always knock down both the severity of the cold as well as the duration of having to put up with this pesky little health annoyance by about half as much. And it would seem that the answer would be simple enough to deduce, but it’s not.

     For all of the benefits that I get from using zinc to combat a cold I also have to accept a sudden flair in all of my MS symptoms after about the third day of using the zinc. And if I don’t stop completely after the fourth day I risk having a full blown MS attack that could last for days or even weeks. And this is knowledge that I have acquired over almost sixteen years of having both colds and Multiple Sclerosis so I know for a fact that this is how my body reacts to zinc.

     And in fact, while were on the subject, this is pretty much the same choice I have to make when deciding whether or not to get a flu shot or not each year. I really don’t know what they put in the flu vaccine, though I’ve heard they use mercury as a preservative, but whatever is in it I seem to always have a reaction that in many cases is even worse then having the flu itself.

     And when you consider that recent studies have shown high levels of iron deposits in MS patient’s brain lesions after they have passed away I just have to wonder if heavy metals are something that people who suffer from MS, or perhaps any autoimmune disorder, just can’t tolerate to much of in their systems.

     However, these are not the only triggers when it comes to me personally and many of these other vitamins have nothing to do with metal in any way, or at least as far as I know. I cannot tolerate vitamin B12, same thing as above my symptoms go nuts after just a few days of trying to take it, however what’s strange is that, no other B vitamin seems to affect me like this. Vitamin E also seems to adversely affect my MS along with Cod Liver Oil, though Omega 3 fish oils don’t bother me at all.

     And one final note here about iodine, I recently read that salt, or sodium, may play a part in triggering Multiple Sclerosis. And I can truly believe this as well, if the salt has iodine added to it which most of the time it does, as at some point years ago I tried taking iodine supplements, for some reason that I can’t remember anymore, and with in two days I stopped as my MS began to rebel violently to the addition of this nutrient in its more concentrated form.

     Well that’s some of the things that affect me. I would be very interested in knowing what triggers other people with MS, or any autoimmune disease, have noticed in their lives? Who knows, maybe we can figure this thing out on our own!

 

By Bill Walker

MS Changes in Weather and Heat Exposer

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Yes! It really does snow in Western Washington.

     It’s been quite a few years since I was diagnosed with Multiple Sclerosis and over that period of time I cannot  even speculate how many times I have read that exposer to higher temperatures is linked to a worsening of MS symptoms. And of course I don’t really doubt this, everyone’s experiences are different, but I most be the oddball out because it does not seem to be the temperature that  bothers me but rather, the temperature combined with the humidity that does me in.

     I can go out on any hot day where the humidity is low and not seem bothered at all by the actual temperature. And what is even stranger is that I can take a hot shower, where it is humid, and not feel any worse when I’m finished though to be honest, I don’t take long showers, so that might be the difference here?

     On a slightly different note, I have also noticed that I sleep much better during the Winter months when the weather patterns are primarily influenced by low pressure systems instead of high pressure systems during the Summer months. And this also translates into less fatigue as well as a slight decrease in all of my MS symptoms during the Winter but I still don’t think this is correlated to temperature, or at least, not entirely.

     Does anyone else see a difference in their MS symptoms during different weather patterns? I’m really curious! 

by Bill Walker

 

MS and Single Payer Obamacare

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Sunset in the Pacific Northwest

Many people have complained about Obamacare and how it adversely affected their current healthcare coverage. It’s unfortunate, in my opinion, the one thing that could have saved a great deal of grief and made the entire system cheaper and fairer for everyone was a single-payer program for all. And yes, I’ve heard about the people who fly to the US from Europe or come from Canada for their operations, but you have to remember that these are the richest, the top one percent, of people who can afford to pay cash for their procedures because they don’t want to wait for their procedure to be scheduled in the future. It’s not that our healthcare system is so much better, it’s because they just don’t feel that they should have to wait if it’s not an emergency procedure. A single-payer healthcare system is fair for everyone!

     SINGLE PAYER BEATS WASTE AND FRAUD

     Healthcare in America is a $2.6 trillion dollar a year industry. Of that, $750 billion is estimated to be spent on procedures, medicine, and equipment that was unnecessary to begin with and only done to avoid law suits or increase the bottom line of a greed based medical and insurance industry. And another $60 billion is lost thru Medicare and Medicaid annually because of fraud nationally.

     Until the Affordable Care Act, the average administrative cost to provide you with insurance was 37 percent of your personal or employer based  insurance policy. Under the new law that drops to 20 percent. But in the cases of Medicare and Medicaid they cost only three percent for the government to administer your coverage.

     O.K., let’s do the math: 37 percent of $2.6 trillion dollars is roughly $957 billion for administrative costs and profit for insurance companies and their investors otherwise known as Wall Street. At 20 percent, the amount is roughly $520 billion dollars for the same administrative bottom lines. Now if we had a single-payer system that cost only 3 percent for administrative costs, then cost would drop to roughly 72 billion dollars.

     The Obama Administration currently has budgeted $250 million dollars a year to reign in Medicare and Medicaid fraud. My question, why not a billion dollars in an effort to reduce $60 billion dollars a year in fraud, down to maybe $5 billion or more?

     Even without reducing the unnecessary costs mentioned above, that leaves almost a trillion dollars to cover all of the Americans who don’t have insurance under the old way of doing things. It saves money, and covers more people, so why not single-payer coverage? 

     Think about it and feel free to comment. As Pat Benatar once sang, “Hit me with your best shot!”

MS Michael Jackson & Propofol as a Treatment

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Wall Mural in Blaine Washington

  

      If Propofol sounds vaguely familiar to you it’s because it is the same drug that Michael Jackson overdosed on while using it as a sleeping aid. But it’s also the best damn MS treatment I’ve ever received since my diagnosis sixteen years ago bar none. If you’re not familiar with Propofol it’s a fairly new anesthesia medication that is administered via intravenous infusion just before surgery. And if used correctly it is a much safer drug that also has far fewer side effects, then many other drugs such as Ether or Sodium Pentathol that were used previously for the same purpose. In my case it was used for both a Colonoscopy many years ago and more recently for a Hernia operation.

     In both cases where Propofol was used I can not stress enough at how much difference it made in almost all of my MS symptoms. The first thing I noticed upon waking up even though I had discomfort caused by each procedure was a total lack of pain in my lower back as well as no pain in either of my Sciatic Nerves running down my right and left leg’s. The second was a noticeable decrease in the amount of numbness in both my hands and feet. And the third was very little spasticity in my legs after each of these procedures. And this reduction of pain, numbness, and spasticity lasted more than twenty four hours after my discharge from the hospital.

     Of course I have no idea how Propofol works or in fact what it really does to block your awareness while undergoing surgery but I would love having something like it as a sleep aid at night in a pill form specifically to treat Multiple Sclerosis and all of its other symptoms. I don’t know if Propofol is an anti inflammatory or not but it sure seemed much better at blocking my pain and numbness then anything else I’ve ever tried.

    The benefits as far as I’m concerned were so impressive that I would certainly encourage researchers doing MS studies to spend some time looking into Propofol and any other drugs that work in the same manner as possible future treatments. Yes, it was that good at reducing my discomfort, period. It was as close to feeling like I didn’t have MS as I have felt since before my first major attack!

    

By Bill Walker

MS and Vitamin D Revisited

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100_0444      Lately I’ve read a virtual ton of reports and studies about Vitamin D and its possible cause and effects when it comes to Multiple Sclerosis. I think it’s great that science seems to be homing in on Vitamin D deficiency as being at least one of the likely players in this complex disease. I’m also glad to see that many Neurologists are now advising their patients to start taking a Vitamin D3 supplement as a possible way to slow down the progression of MS and Alzheimer’s as well. I do take it, and I honestly feel, that it helps.

     However, when I start seeing advertisements for very expensive UV lighting apparatus marketed to people who have been diagnosed with MS to help them boost their skin’s ability to develop more of this vital vitamin on their own, then I start to have a problem. The first one should be obvious to almost everyone, in that, UV lighting can be a very dangerous way of trying to enhance your skins ability to produce more vitamin D when the increased prevalence of developing skin cancer is factored in. And second, I am not at all sure that more Sun light from either the Sun or artificial UV lighting is where the true problem exists.

     Why? Because as a kid I spent seemingly all day every day outside whenever I could all year long, which makes me think that the problem may lye more in the skins ability to convert sunlight into Vitamin D then the actual amount of Sunlight that a person receives over any given period of time. It’s already a fairly well established fact that people with darker skin pigment are far less likely to develop MS in the first place then individuals, like my self, who have much fairer skin tone to begin with. My opinion is that it is far more likely that a genetic defect in the skin itself is mostly to blame for my skin’s inability to produce this vitamin on its own.

     And I just don’t think that using artificial light in this way is a beneficial addition to people like me. And in fact, it may be far more dangerous in the end then just adding a Vitamin D3 supplement to your diet. But that is a risk that each one of us must first weigh and ultimately decide on our own!

 

By

Bill Walker

 

MS and Eye Flashing Shadow Snake

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Eye of the Shadow Snake!

     One morning about three weeks ago I wasn’t terribly surprised when I woke up to the flashing strobe light sensation that often accompanies one of my MS attacks when I first got out of bed. I had known for a couple of months that I was experiencing my somewhat annual flare up so it didn’t strike me as being any big deal as that is normal for me. The only thing that was different on this occasion was that the flashing seemed confined to just my right eye when usually it’s in both eyes. However, I have become used to the fact that my attacks are never exactly the same from year to year so I paid very little attention to that fact.

     It wasn’t until the next night when I was driving to a local baseball game that the real strangeness taking place in my right eye was to get my total undivided attention. As I was driving the flashing started to give way to this grid of dark spots that covered part of my vision which was bizarre, in that, I have never had that as one my symptoms during an MS episode before. I felt like if I had a pencil I could have easily played that kids game of connect the dots and that’s exactly what this grid looked like as I gazed threw it and onto the rest of the world which is also a bit distracting when your watching cars coming at you at fifty to sixty miles an hour. But the strangest and literally the scariest symptom was, as yet, to come.

     Upon reaching the game what I can only describe as a snake or worm like dark shadow began making figure eights throughout my line of vision, but again, just in my right eye, which at the time, I was thankful for because one of my biggest fears about MS is eventually going blind. The thought of losing my eyesight, to say the least, terrifies me when ever I have MS related eye problems. The worm continued its seemingly prearranged journey through most of the rest of the baseball game until about the eighth inning when it began to fade into the twilight of the oncoming darkness beyond the lights of the stadium. And thankfully it was completely gone by the time I started the long drive back home, but most certainly, not forgotten.

     It just so happened that I had a doctors appointment with my regular family doctor the next day and after describing my previous day’s experience my doctor scheduled an emergency appointment with my Optometrist the very next day after that. When I woke up that next morning, and as I prepared to leave for my appointment, I was greeted by what seemed like a hundred floaters moving around my field of vision in my right eye, which was kind of like watching a meteor shower in my head.

     Fortunately, it did not take long for my Optometrist to figure out what was happening, and what was happening had absolutely nothing to do with Multiple Sclerosis at all. He explained that as we get older there are tiny fibers in our eyes that attach the gel like substance inside of the eye to the Retina and sometimes these fibers break causing all of the symptoms that I had previously described. He referred to it as a Vitreous Detachment which I quite honestly had never heard of before. He went on to explain that this can only happen one time in each eye and that people who had this happen in one eye were far more susceptible to having this happen again in the other eye at some later date.

     As my fear of losing my sight began to abate he told me that it would probably be about thirty days for the floaters to finally disappear altogether, which seems to be just about right as it’s been about that long, and I’m not noticing to many of these any more. And let me add this, this was not a great experience to have, and I’m certainly not looking forward to going through this again if it does happen, but at least I’ll now what’s happening the next time, the terrifying shadow snake comes to call!

By: Bill Walker