Category Archives: Uncategorized

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

The More Humorous Side of Multiple Sclerosis

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Election 2014, Run Forest Run!

     Though I am not happy about having MS I do have to admit from time to time I have to laugh about something’s that are a direct result of my disease.

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     You know, it might be MS if, the next time your at the Doctor’s office scanning through all of the entertainment and fashion magazines and find yourself asking, “Who are these people?” And it might be MS if you find that you can read a newspaper or your favorite magazine twice as fast as anyone else in your family because your fingers just can’t seem to separate the individual pages.

     And it also might be MS if, you can shoot a pen eight feet out and away from between your fingers, like a dart, every time you go and try to pick one up sending family and friends diving for cover. And it may also be MS if, the next time you look at your check registry and find that you dated all of your check payments for the year 2017. And finally, you know that it might be MS if, you discover that you have changed the spelling of many common words in the English language the next time you sit down to write a letter! Thank God for spell check, even if I do hate those squiggly red lines!

 

     Trying to keep a lighter attitude towards Multiple Sclerosis I think is a healthy approach. If anyone wants to have my blog linked to their email so they can ignore the thousand places that I post these on facebook, all you have to do is just look to the right of this page where it tells you how to sign up to receive this blog as a link that you can open directly from your email, or you can just click on one of the thousand links in facebook, your choice!

 

     Next blog, I hope, will be about my experience of being in a, Clinical Trial, if you’re interested!

 

Bill Walker

MS and Beyond goes to Haunted Northern State

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The old on campus church

     I worked on the grounds of Northern State Hospital in Sedro-Woolley, WA for over five years at two different jobs and with Halloween just around the corner I thought I would share some of my experiences, as well as a few others, during my employment their. As many of you have heard, or perhaps not, this old psych hospital built and opened in 1912 is purported to be quite haunted. I can certainly attest to the fact that there is at least some very strange energy that manifests itself on this sprawling 400 acre plus site.

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The fog you see in this picture was not visible when this picture was taken and there is no electricity to that building so it’s not steam.

     My first job on these grounds was with Job Corp which is located, in part, in the four old dormitory buildings that housed almost all of the patients until the hospital was closed in 1979. And these buildings are still used for the same purpose for the kids attending Job Corp. And part of my job was to do bedroom checks, since I worked the night shift, making sure the students were all where they were supposed to be. The dorm I worked in had two floors, boys on the ground level, and girls on the second floor, and each floor is set up in a T formation with heavy magnetic steel fire doors separating the three different hallways that make up the T. All three of these double fire doors are set up to close together in the case of a fire as they are all on the same electrical circuit. I always knew when I was being escorted along my rounds by something, or someone that I could not see, as quite often when I would pass thru one of the three sets of fire doors they would suddenly close right behind me but the other two sets would remain open. Like I already said, that’s impossible, they are all on the same circuit and it wasn’t the same set of doors each time. It varied I guess depending on which set my invisible helper decided to release for my benefit.

     If you ever watched the show Ghost Hunters on A&E they had a half hour segment about Northern State where in one camera shot you can actually see a shadow step out from behind a wall and into a hallway and then suddenly step back out of the camera shot. I have been down that hallway once on a tour and it’s blocked off so you can’t go any further then where you see the shadow person emerge from and then disappear from. I guess permanently sealed doorways don’t present much of a problem for him or her!

     I also worked at the Evaluation & Treatment Center that used to be housed on the same grounds about a quarter of a mile down the hill from Job Corp. And much to the dismay of two of our nurses, Shadow Man, as he is referred too, made a couple of visits to see us down there as well. The first one was when one of our night nurses was looking out our break room window, not really thinking about much of anything, when she said that the whole window became shadowed over just like someone was walking right past the window except, other then a shadow, there was nobody their. The second nurse to make his acquaintance about a year later had gone outside for a break during a heavy rainstorm. She had been standing under our front door eve when she very suddenly ran back inside exclaiming, “Oh my god, Oh my god, I think I just saw shadow man.”

     After calming down she explained how she had just been kind of staring out at the rain when she suddenly noticed a complete full outline of a man running thru the rain. The thing was though, as she put it, “I could see the rain falling right thru him, but it was just a shadow.” I thought that was going to be the last night we ever saw her but she did continue to work their even after her encounter though she rarely went outside by herself after that night.

     I have many other stories that I heard from students and the like but I’ll close with the two scariest stories of all. The first happened in the hospitals administration building that houses a different treatment center from the one I worked at.

     One night two nurses went to get on the elevator that runs between the basement and the first and second floors. However, the basement is no longer used except for storage so the elevator is locked out from going down to that level. On this night though the ghosts had other plans and not only did the elevator go down to the basement it refused to go back up after the doors opened and then stayed open no matter what buttons they pushed. I was told that it took the fire department to come and unlock the stairway door and escort these two nurses back upstairs because they wouldn’t leave the open elevator until their rescuers got down there.

     And finally, the old hospital building that is on the grounds has been used on a couple of occasions to film horror movies by Valentine Films. One movie called, Bloody Mary, didn’t need any computer to add special effects. In one scene a woman is in a bathroom and is supposedly being attacked by Bloody Mary and as the camera pulls away so you can no longer see her, the bathroom lights start flickering on and off rapidly, creating a great effect along with her screams. However, like the magnetic doors, this bathroom is wired into the electrical system for that entire section of the hospital which means that there is no way the light’s can do that. And if you tried to do this from the electrical panel you would blow out the entire system for that part of the building. It’s in the film which you can still get on DVD online.

     So if you ever find yourself on the grounds of Northern State remember, It’s always Halloween their, so expect the unexpected.

HAPPY HALLOWEEN!  

 

Bill Walker

 

The Spiritual Side of Multiple Sclerosis

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100_0512     When I think about myself as an individual in this lifetime experience, I always have to separate my reality, into two unique pieces which quite simply is a body and a soul. And strangely enough this is of great comfort to me when I start to think about my Multiple Sclerosis diagnosis. I understand that MS is a physical (body) ailment that has little to do with the soul part of my incarnation beyond being a lesson on learning compassion and love. I’m sure that sounds like something that should be significant to my spiritual growth overall, which it is, but I take great comfort in knowing that on the day I cease to exist in the physical plane is also the day that MS ceases to be a part of my continued existence, simply stated if I learn my lessons well enough, I can move beyond Multiple Sclerosis and never have deal with it again as far as I’m concerned.

     Have you ever heard someone with MS or Parkinson’s or Cancer or any devastating disease say that it was the best thing that ever happened to them before? I can assure you that you didn’t hear it from me but I have come to understand what it is they are referring to when they make such a statement. After you can move yourself beyond the, why me phase, you start to see the world in a completely different manner. It’s like coming out of a deep all encompassing fog where you can see the world with eyes that no longer tune out a deeper compassion for the human experience, in short, you learn to love on a much more profound level then you ever thought you could. It makes almost everything that most people worry about in life seem incredibly insignificant from that point on. And if it took my getting Multiple Sclerosis to learn that, then I have to consider the possibility, that though I’m not really happy that’s what it took, perhaps it was worth the experience to achieve that overwhelming spiritual growth that is occurring within me.

     And then it all starts to hit you just how petty most of what our race seems to think is important in this world. It’s not about amassing great wealth, or having the biggest house, or the power to influence other peoples lives just because you can. It’s ultimately about compassion, truth, and the willingness to help everyone else around you to find peace in their own existence.

     And most of all, it’s about finding your own personal faith in who and what you are, and sharing that with everyone else!

 

I’m dedicating this blog entry to a person that I didn’t know all that well, but I wish I had. When I met her she was in the advance stages of Progressive MS and little did I know at the time that this would be almost prophetic since it was twenty years before my own MS diagnosis. She was one of the kindest and gentlest spirits that I have ever met never once complaining about the hardships of her own life which were extensive by any normal standards that most of us experience. However, she left behind her spiritual compassion that will be shared and passed on by each of her four sons, John, Steve, Bill, and Dave. She brought the light of God into this world and it is only right that this light be shared by all!

 

Camille Marie Kelly

Born:     11/27/1932

Passed: 1/10/1995

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