Tag Archives: Multiple Sclerosis

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

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

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 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 Depression Robin William’s Tribute

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Robin William’s winning Academy Award

     What an incredibly sad tragedy it was to lose one of America’s funniest and all time greatest comic geniuses Robin William’s to suicide brought on by a debilitating case of depression. If one good thing could come out of this horrible event it would be a moment of awakening of America’s collective compassion, as well as acceptance, of the serious nature our mental health problems really are in this country. We can no longer ignore and try and bury this growing issue in the deepest recesses of our health care system as if it doesn’t pertain to every single individual nationwide, or even worldwide, for that matter. It is past time that we finally relegate mental health with equal concern to all other considerations in our health care system.

     As a person who suffers from MS I know this all to well as I have spent many of my working years in the mental health field as both a group home counselor and as a unit coordinator in a mental health treatment facility. But there is even a bigger reason for my concern and interest in the field of mental health. As a child, I was also diagnosed with mild to moderate depression. And in a strange way my, on again off again, depressive state is much like the multiple sclerosis I was diagnosed with sixteen years ago in that it can be triggered into an active dark state of being only to recede just as quickly back to a place of relative remission. And also just like MS, depression is a silent and invisible intruder, that stalks its prey with little if any noticeable changes to anyone outside of the person who is experiencing its extreme emotional and physical wrath.

    In my case, I have been extremely fortunate to never have been so consumed by my inner demons as to consider suicide a viable alternative, but that doesn’t mean that from time to time I must find the inner strength to face these forces of emotional mental destruction head on. And my deepest battle with these personal enemies came simultaneously, which one would expect I think, with my diagnoses of multiple sclerosis. It rocked my mental world in the worst kind of way right to its core. At that time I couldn’t think of anything any worse that could have ever happened to me. Which of course, isn’t true. But it did take me two plus years of being on the antidepressant Zoloft along with strong family and friend support before again the Sun finally rose in my world.

     I am very happy to report now that I have been reasonably safe and sane for going on nearly ten years, but I am always aware that it takes vigilance and a positive outlook on all aspects of my life to remain ahead of the many pitfalls that can occur without warning to stay one step ahead of depression. And one of the biggest things that I have come to realize in my fifty seven years of life is that we all, without exception, can fall victim to our own mental instabilities and emotional environmental trauma’s. And just like the flu, anyone at anytime can have a mental health crises. And it’s nothing to ever be ashamed of because it’s just one more of our shared human frailties!

      RIP Robin, we’ll miss the laughter that you brought into all of our lives!

 

By Bill Walker