MS and Edible Pot or THC

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100_0562     I’m not a big fan of edible marijuana only because you’re never quite sure how much you have consumed until it takes affect. Where as when you smoke it the effects are quick and very apparent almost immediately. I will admit that in either instance it does a great job in reducing my spasticity and pain in my legs and body. With that in mind here is a picture blog of the many edible forms of THC that are available, legally, in Washington State.

Topical $40.00

Topical $40.00

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Brownies six for $40.00

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Cookies $15.00

These prices vary from store to store and week to week. This industry is so new that changes in product and prices are always changing. Inhalers are also available. The vapor cartridge costs $50.00. The vapor pen and cartridge cost $65.00. When I checked last the price of the cheapest gram of pot you can smoke was a very reasonable $10.00 or $35.00 for an eighth of a gram. However that is not one of the more potent brands.

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Zoots Lozenge Drops $35.00

 

 

 

 

 

 

 

Multiple Sclerosis by the Numbers Part 2

Multiple Sclerosis by the Numbers Part 2 

How You Responded to the Article

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     First of all, I wanted to thank everyone who read my article. At over five hundred hits, and still going, this was by far my most read blog entry since I started writing. I decided to write a brief essay of what your comments were.

     I had many people respond that they felt that Multiple Sclerosis was often a missed diagnosis. I had several people tell me that they felt that they probably had Lyme disease from a tick bite, unfortunately not a single person told me that they had conclusive proof of their feelings about a Lyme their disease diagnosis, which actually is pretty easy to rule out one way or the other.

     I also had quite a number of responses that thought that CCSVI and brain flow issues were more of the cause for their symptoms then anything else. On this issue I think we’re just going to have wait for further research to see if this is truly a causal effect or not. In my case I don’t think it is, but who knows.

     However, none of that really faces the issue as to why there are so many cases of reported MS in the U.S. as compared to the rest of the world. On this subject many individuals replied that their Neurologists agreed that roughly five hundred thousand cases of MS was way to low and that the numbers I was using were at least twenty to thirty years old. Which of course begs the question, how come these counts have not been updated in all of these years? Again, many Neurologists guessed that the true number of U. S. is probably somewhere closer a million, give or take a few. That’s a pretty damn big difference if you ask me, we need a new count as soon as possible! Even if that count is just in North America and Europe where more accurate numbers are far more easily obtained then the rest of the world.

     And the one thing that I found most interesting in my responses were the shear number of people in Ireland, Scotland, and Australia who questioned if Multiple Sclerosis really is more prevalent in America by percentage, then it is in their countries.

     The only way we are going to answer some of these very important questions is to demand that the medical establishment, along with their research arms, take the time and fund a new count. Is that really asking too much?

 by Bill Walker

 

My name is Bill Walker and I am an MS survivor. In an effort to remain financially independent I just published my very first novel entitled, Visus, which is now available as an eBook. Briefly, the story follows a pod of killer whales as they travel up the North American Pacific coast to a place that they know of as Great Schools of Fish.

Along the way Visus loses his mother which entices him to follow the Silent Calling of Nature into the Ocean that holds all Oceans to discover where his life’s path must go next.

If you read, and liked, Jonathan Livingston Seagull, by Richard Bach, I’m sure that you will enjoy following Visus on his journey of self-discovery.

If there is any way that might be willing to review and/or post my link on your appropriate facebook or website I would certainly be most appreciative.

Thank you for your consideration.

Sincerely,

Bill Walker

http://www.amazon.com/Visus-William-C-Walker-ebook/dp/B00U8ZN4GE/ref=sr_1_1?ie=UTF8&qid=1427573378&sr=8-1&keywords=Visus

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Imagine: A Drug Free MS

Copaxone

     My very first multiple sclerosis attack, which by the way my doctor at the time assured me was just a pinched nerve, lasted around three months. And my symptoms were extremely mild although they did pretty much affect every part of my body. And then, at the end of those three months, that was it I didn’t have any other attacks or symptoms for the next six plus years.

     Fast forward twenty two years and I’m reading how in many cases, after that very first MS event, researchers now believe that the body essentially still retains its ability to repair that initial damage that is done to the myelin. And at least in my case this certainly seems to fit my own disease’s early progression. However, as time goes on your body slowly starts to lose its ability to continue these repairs and the damage becomes much more serious to the central nervous system. Which also seems to fit me, unfortunately, pretty well.

     If that is all true, and only more research will answer that, it seems to me that science should eventually be able to turn the bodies own ability to make these repairs back on. And that is all very encouraging but it was something that I read a few minutes later in my own research that really caught my attention.

     Many researchers are stating that it appears that most of the damage caused by multiple sclerosis takes place up until the age of sixty. And after this, MRI’s are showing little further deterioration in the brain and spinal tissue. And their also starting to question whether or not it’s even prudent to continue use of any of the current disease modifying drugs as they may no longer be having any effect on MS progression.

     Well, I’m not sure about anyone else, but I sure am tired of giving myself daily or every other day injections. I plan to watch the studies very closely over the next couple of years, which will make me sixty, to see if this continues to look like a reality. And if it does, I plan to have a very long discussion with my neurologist.

     I’m rapidly coming to the conclusion that it may be time for me, and perhaps others, to start to consider weaning themselves off of these very expensive treatments which in turn would start to squeeze these drug companies’ profits to the point where they may start to actually look for a cure instead, or, probably not!

by Bill Walker

I just recently published my very first novel, if interested here is the link:

http://www.amazon.com/Visus-William-C-Walker-ebook/dp/B00U8ZN4GE/ref=sr_1_1?s=books&ie=UTF8&qid=1426799056&sr=1-1&keywords=Visus

Multiple Sclerosis by the Numbers

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

     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

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

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