tag:blogger.com,1999:blog-48263756871281008602024-03-13T18:43:47.501-03:00My MS JourneyAnonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.comBlogger674125tag:blogger.com,1999:blog-4826375687128100860.post-51677030253952489652019-01-09T13:15:00.002-04:002019-01-09T13:15:54.606-04:00Changes<div>
It's been a long time since I've posted, mostly because there are few big things that have occurred to me in that time period. In the wider world, there have been reports of possible MS treatments (such as the stem cell theory), but nothing that I would trust to try. When I took a chance on CCSVI treatment in 2010, it was after many months of research and a conclusion that the hypothesis made sense. Almost 9 years later and the improvements I gained after the treatment (balance, autonomic functions, fatigue) continue to this day. So why do I look at all the new drugs and procedures with so much skepticism? I guess it’s because I’ve seen so many MS scams and, while I was excited about taking a chance in 2010 on something that made sense to me, I haven’t seen anything like that since.</div>
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So, how are things for me these days?</div>
<div>
<ul>
<li>I am now in a power wheelchair (Permobil F3). I still use my small foldable EV Rider Transport for car trips out of the apartment since I don’t want to buy an accessible van until I have to. So far, my upper-body strength is adequate to use the small scooter when we go out. I no longer drive since I can’t get into the vehicle myself: someone else has to load it into the back of our SUV. </li>
<li>I can still transfer (usually safely), but I can only walk in the therapy pool at the YMCA. We plan to go three times a weak, but it rarely works out that way because of other appointments or being sick. This week, for example, I’ve been battling a light cold… it may only be a slight cold, but it’s still enough to dissuade me from going. I get weak very quickly if I even just have a light flu or cold.</li>
<li>A similar sort of weakness occurs when I just do a bit of work on my knees or on my haunches. I’m often so weak after a little effort that I can hardly get back into my chair again.</li>
<li>My left foot and hand are almost useless… which means that the arm and leg are getting weaker from lack of use. You should see my right arm, though. </li>
<li>Almost constant pain or discomfort is a drag. Some of the plethora of pills I take help (Arthrotek for arthritis, for example), but marijuana oils and distillates (Sativa-dominant during the day, Indica-dominant at night) help a lot, especially if I remember to take enough before the pain gets bad. When the pain is too much for marijuana to handle, I use whiskey, but with all the drugs I’ve taken for so long my liver isn’t in great shape so I have to find an alternative. </li>
<li>I’ve partly “smart-homed” our apartment and cottage. Some lights, the front door lock/doorbell/camera/mic/speaker (at the apartment) and my entertainment systems can almost all be controlled by my voice. I’d love to find some reasonably priced smart door openers/closers that would be compatible with Google Home. </li>
</ul>
</div>
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Despite my health problems and the cost of coping, I’m still quite happy. My family and friends make life worth living, and having our kids in town (not even just in the country) is marvelous. And my little granddaughter is such a joy to me that I have to smile every time I think of her. </div>
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I read a lot and participate in Twitter and Facebook conversations. I want my kids and their kids to live in a healthy democracy in a healthy environment, so I’m doing what I can to challenge climate change deniers and lying, bigoted populist politicians.</div>
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Life goes on. </div>
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Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-11595980178688985442018-05-02T15:16:00.002-03:002018-05-02T15:16:32.983-03:00A letter to SenatorsI sent the following letter to a bunch of Senators:<br />
<span style="font-family: sans-serif; font-size: 12.8px;">As a disabled medical marijuana user for four years (I have MS), I would like to make a few comments from my point of view concerning the legalization of marijuana. </span><br />
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I started by vaping dry marijuana, but have lately moved to two types of marijuana oil capsules (daytime with higher CBD, nighttime with higher THC), along with vaping a concentrate if I need extra pain or insomnia medicine. This has made my quality of life so much better. However, the ridiculously harsh penalties for marijuana possession over one ounce and idiotic provincial government monopolies mean that I will no longer be able not legally get my medical marijuana:</div>
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<ol>
<li>I can not legally get oil capsules. Right now I have them sent from dispensaries in BC. These "grey market" products are available from trustworthy and knowledgeable providers. As the federal and provincial governments crack down to ensure provincial monopolies, these dispensaries will be shut down. As far as I'm aware, no licensed producer has oil capsules for sale (certainly mine doesn't, and the rules make it a hassle to change providers). In order to have my own made, I have to buy dry weed, give it to someone who can make it into oil, then into capsules. I'm allowed 2 ounces of dry weed per month. If I hand that to someone to make the oil capsules, we are both doing something illegal. Ridiculous. </li>
<li>Some legal producers have started making marijuana oils. These cost at least 50% more than if I get them from the grey market, and each licensed company has a small number of types (strains, sub-strains, THC/CBD %, etc). I would have to get what I need from more than one producer... yet I'm only supposed to use one licensed producer. </li>
<li>Many licensed producers don't even indicate what strains are used in their dry weed or oils. Some grey market products don't either, but I don't buy those products. I want to use sativa-dominant strains during the day, and indica-dominant strains in the evening.</li>
<li>No licensed producer has shatter. Waiting until 2019 for relief is not an option. Edibles won't be available 2019, probably at ridiculous prices. Edibles aren't that important for me, but for some folks it's their preferred method. Many cannot make hard candies or jellies themselves.</li>
<li>CBD is not psychoactive, yet to get a true CBD oil (there are "hemp" oils in health food stores, but we don't know how much CBD is in it) we have to go through a licensed producer. Again, the price is way higher, the provenance is not provided, all for a non-psychoactive product that should be available to anyone without any prescription. CBD oils (even with a smattering of THC) should not be a controlled substance at all. The same goes for CBN and all the other 80 or so non-psychoactive cannabinoids. </li>
</ol>
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I'm happy weed is going to be legalized, because there won't be people charged or fined for using something that is so benign compared to alcohol and tobacco. I am not interested in using marijuana recreationally, but other people do, and I'm fine with that. We do need to find ways to catch THC-impaired drivers, but we have had that same issue for years with illegal marijuana or legal drugs, and before breathalyzers, we had that problem with booze. All this hoopla about huge increases in policing is just a way for provincial governments and police departments to greatly increase their budgets on the backs of buyers.</div>
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I would hope that sober second thought will lead to a better law and regulations. As it is right now, medical marijuana users are collateral damage. We'll no longer have access to the meds we need, while ridiculous laws and regulations mean that, at the discretion of police and prosecutors, people can still be sent to jail for getting their meds. </div>
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Edward Robak </div>
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Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com2tag:blogger.com,1999:blog-4826375687128100860.post-77376930167975132592018-05-01T15:23:00.001-03:002018-05-01T15:26:17.608-03:00The Story ContinuesLife is good. There, I said it. Despite the disability, the discomfort and the pain, I'm quite happy. I've just passed the 8th anniversary since my CCSVI treatment in Poland, which is still helping some of my symptoms). Here is why my life is better (well, relatively, at least):<br />
<br />
<ol>
<li>I have a great caregiver (my wife, Mary) and good support from family and friends. Love them all.</li>
<li>My daughter and her family and my son now live in Fredericton. It's so great to see them several times a week.</li>
<li>My granddaughter Eva is the apple of my eye. She is almost always happy and is growing like a weed. When she brings me a book to read and looks up with a big grin, my heart skips. Never underestimate the power of a grandchild to improve your life.</li>
<li>I tamed my IBS. Until we figured out what to do (diet change) I hardly had a day without stomach problems.</li>
<li>I'm getting exercise on a more regular basis, in good part because I no longer have stomach problems every day. Three days a week at the pool, exercises and stretches every other day, and physio once a week.</li>
<li>I think I've got my marijuana consumption just about right: high CBD/low THC Sativa-based oil in the daytime, High THC Indica-based oils in the late evening. While I'm getting some from a licensed producer, the widest variety of products (and least expensive) come from well-established dispensaries in the grey market. I'm worried that, when it's legalized, the provinces will clamp down on the grey market, leaving medical marijuana users with no options.</li>
</ol>
<div>
Overall, with those changes, my quality of life has improved greatly. Crossing my fingers.</div>
Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-26643354256443335262017-12-25T15:34:00.000-04:002017-12-25T15:34:01.332-04:00More Marijuana Field ExperienceIn the last couple of months I have been trying to move towards mostly edibles, pills, tinctures and mists, away from smoking or even much vaping. Other than an occasional stomach upset when I take certain kinds of THC pills on an empty stomach, I could easily see myself moving completely away from smoking and vaping, except for enjoying a bit of Indica concentrate to vape in the evening. I've been experimenting with times and strains and amounts. This seems to work on average days:<br />
<br />
<ol>
<li>Sometime after lunch I take a 40 mg THC capsule (it looks like finely ground green marijuana, but it's been decarboxylted and may have some THC oil in it to reach the right THC content). It's not clear if these pills are Sativa or Indica, but if I could choose, I would go with Sativa for daytime. It takes anything from 45 minutes to 2 hours to start to feel the effects (a mild high), which lasts a few. Once I run out of these capsules, I'll probably move to cannabis-infused oil capsules that have a more immediate and consistent effect.</li>
<li>Through the afternoon and evening I may vape some high-CBD Indica weed. There's not any kind of high to speak of, but it does seem to settle my stomach and reduce muscle pain. I'd prefer to try Sativa, but would probably go for a high CBD oil, if I could.</li>
<li>In the afternoon or evening I may use a Sativa mist or tincture sublingually, again to reduce discomfort and pain. I have learned NOT to buy high alcohol tinctures and mists because the pain of having pure alcohol under my tongue is too great. The oil tinctures are usually 30 mg per ml. I have taken to refilling the 8 ml mist bottles with bourbon and 250 mg THC oil pills, giving about 3 1/2 mg per spurt.</li>
<li>In the late evening I'll have a 50 mg Indica THC oil pill an hour or two before bed. That, and vaping some Indica concentrate usually put me to sleep nicely.</li>
<li>If the pain is REALLY bad, I use whiskey, but it seems that, if I head off the pain with marijuana, I don't need whiskey as much.</li>
</ol>
Note that almost all of these products come from the grey market since licensed producers offer very few of the products i want and when they do have them they are three times the cost of the grey market.Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com7tag:blogger.com,1999:blog-4826375687128100860.post-32285550457218158342017-10-10T11:51:00.002-03:002017-10-10T11:55:21.441-03:00Primer on marijuana extracts<div dir="ltr">
A primer on the various kinds of marijuana concentrate extraction methods and the resulting products. What it doesn't do is stress the importance of the strain and substrains used to make the extracts. A general strain rule for me: Sativa-dominant strains in the daytime, Indica-dominant strains before bed.<br />
<br />
<a href="http://email.herbaldispatch.com/c/eJxlUctKxDAU_Zp213KT3LTNoosRHXDjQhTcSR4302JfpCmjf2_GUcdBEsIl5wHnnpfikSz1S_TbUDzQcR0oRgp3o-6He9dK5ax1Ehl4UgjAuUCriOUvf3XPK4UTGZ0h72olK_IeBIDF05O71huGaehbDqxmkI7ACqFkXEpsSqh3N7sGQeyhxr2SGUJHwejB9euio-1KO49511YAmpka0KI0QoGz1DBSjjWKG8spH9ouxmXNxC7j-3T_u6TPIwUquv7QFfNU0HsM2sb1xBf78BsqE7fn8FQB16xxX-GZV05mvNri-LrOW7CUeH9EZ2Qk129jQqbfhX4jVo-L7g_TFVawH0s7T5GmmNA5dl-ii3f8WOhKloc2zEa_pWVtkymtvi7lUuYTjcugI537FL5pbOrIm9QNYo2yUiKP7cV4_QR8Na4e">Click here for the Extract Primer</a></div>
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Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com2tag:blogger.com,1999:blog-4826375687128100860.post-28709628493338629362017-10-09T12:48:00.000-03:002017-10-09T12:48:02.444-03:00Interesting new technology for early detection of autoimmune diseasesThis sounds interesting:<br />
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<div align="center" style="font-family: sans-serif; font-size: 15.744px;">
<strong>CYREX LABORATORIES INTRODUCES SALIVARY ASSESSMENT FOR EARLY AUTOIMMUNE DETECTION</strong></div>
<div align="center" style="font-family: sans-serif; font-size: 15.744px;">
<em>Mucosal Immune Reactivity Screen is First to Encompass All Areas of The Cyrex System</em></div>
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<strong>PHOENIX (OCTOBER 10, 2017)</strong> – <a data-saferedirecturl="https://www.google.com/url?hl=en&q=http://LFPR.pr-optout.com/Tracking.aspx?Data%3DHHL%253d8%252b4798-%253eLCE58%252f37%253c%2526SDG%253c90%253a.%26RE%3DMC%26RI%3D5149736%26Preview%3DFalse%26DistributionActionID%3D92344%26Action%3DFollow%2BLink&source=gmail&ust=1507637715384000&usg=AFQjCNESUC9wHU3VzzPEB26xHhnOcHuoiA" href="http://lfpr.pr-optout.com/Tracking.aspx?Data=HHL%3d8%2b4798-%3eLCE58%2f37%3c%26SDG%3c90%3a.&RE=MC&RI=5149736&Preview=False&DistributionActionID=92344&Action=Follow+Link" style="color: #4285f4; text-decoration-line: none;" target="_blank">Cyrex Laboratories</a>, a clinical laboratory specializing in functional immunology and autoimmune reactivity, continues to revolutionize the way healthcare professionals approach immune reactivity and intolerance. Today, Cyrex Laboratories unveils the <a data-saferedirecturl="https://www.google.com/url?hl=en&q=http://LFPR.pr-optout.com/Tracking.aspx?Data%3DHHL%253d8%252b4798-%253eLCE58%252f37%253c%2526SDG%253c90%253a.%26RE%3DMC%26RI%3D5149736%26Preview%3DFalse%26DistributionActionID%3D92343%26Action%3DFollow%2BLink&source=gmail&ust=1507637715385000&usg=AFQjCNFpWYh0ODz35ayhr2o7yIvO964JHg" href="http://lfpr.pr-optout.com/Tracking.aspx?Data=HHL%3d8%2b4798-%3eLCE58%2f37%3c%26SDG%3c90%3a.&RE=MC&RI=5149736&Preview=False&DistributionActionID=92343&Action=Follow+Link" style="color: #4285f4; text-decoration-line: none;" target="_blank">Array 14 Mucosal Immune Reactivity Screen™</a>, the first and only test capable of assessing mucosal immune reactivity in saliva as it measures SIgA and SIgM (Salivary Secretory Immunoglobulin A and M).</div>
<div style="font-family: sans-serif; font-size: 15.744px;">
Early diagnosis of autoimmune reactivity is an essential step toward minimizing the severity and impact of a patient’s symptoms and condition. Mucosal production of IgA and IgM antibodies appears to be an early event in immune reactivity to dietary proteins, bacterial toxins and tissue antigens.</div>
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<br /></div>
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“Array 14 offers patients an excellent opportunity to identify an autoimmune response early,” said Jean Bellin, president of Cyrex Laboratories. “If an autoimmune issue is in the nascent phase of development, the dysfunction may not have reached the blood stream and standard blood tests would read as normal. There has never been such a comprehensive, early stage immune reactivity test like Array 14.” </div>
<div style="font-family: sans-serif; font-size: 15.744px;">
Array 14 is the first test to encompass all areas of <a data-saferedirecturl="https://www.google.com/url?hl=en&q=http://LFPR.pr-optout.com/Tracking.aspx?Data%3DHHL%253d8%252b4798-%253eLCE58%252f37%253c%2526SDG%253c90%253a.%26RE%3DMC%26RI%3D5149736%26Preview%3DFalse%26DistributionActionID%3D92342%26Action%3DFollow%2BLink&source=gmail&ust=1507637715385000&usg=AFQjCNHxr_QtJAKe3Dh6AHzG1zFZmaisGg" href="http://lfpr.pr-optout.com/Tracking.aspx?Data=HHL%3d8%2b4798-%3eLCE58%2f37%3c%26SDG%3c90%3a.&RE=MC&RI=5149736&Preview=False&DistributionActionID=92342&Action=Follow+Link" style="color: #4285f4; text-decoration-line: none;" target="_blank">The Cyrex System™</a>, including:</div>
<ul style="font-family: sans-serif; font-size: 15.744px;">
<li>markers of barrier integrity</li>
<li>immune reactions against all three environmental triggers associated with autoimmune reaction (food, chemical and pathogens)</li>
<li>autoimmune reactivity to self tissue</li>
</ul>
<div style="font-family: sans-serif; font-size: 15.744px;">
Array 14’s comprehensive range and ability to identify autoimmune reactivity early makes it an ideal test suited for annual wellness visits, and anyone who suspects a recent change in diet may be impacting their overall health. The complex and comprehensive Array 14 is also an excellent option for pediatricians, patients who have trouble with blood draws, or naturopathic doctors who prefer saliva screens to blood tests.</div>
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<br /></div>
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Patients with chronic inflammatory bowel conditions, a family history of autoimmune disease or who think they may be suffering from immune reactivity and intolerance are advised to inquire with their physician about ordering this innovative Array 14 from Cyrex Laboratories.</div>
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<div style="font-family: sans-serif; font-size: 15.744px;">
The Cyrex clinical consulting team is readily available for a consultation to discuss the results of patient testing upon request from a patient’s healthcare provider.</div>
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<br /></div>
<div style="font-family: sans-serif; font-size: 15.744px;">
<span style="font-size: 15.744px;">Physicians and other licensed healthcare professionals, as well as patients, can learn more about Array 14 and the other unique arrays that comprise The Cyrex System, at </span><a data-saferedirecturl="https://www.google.com/url?hl=en&q=http://LFPR.pr-optout.com/Tracking.aspx?Data%3DHHL%253d8%252b4798-%253eLCE58%252f37%253c%2526SDG%253c90%253a.%26RE%3DMC%26RI%3D5149736%26Preview%3DFalse%26DistributionActionID%3D92341%26Action%3DFollow%2BLink&source=gmail&ust=1507637715385000&usg=AFQjCNEr53_aHWWXyjRZpv5B1n940sPu-Q" href="http://lfpr.pr-optout.com/Tracking.aspx?Data=HHL%3d8%2b4798-%3eLCE58%2f37%3c%26SDG%3c90%3a.&RE=MC&RI=5149736&Preview=False&DistributionActionID=92341&Action=Follow+Link" style="color: #4285f4; font-size: 15.744px; text-decoration-line: none;" target="_blank">www.joincyrex.com</a><span style="font-size: 15.744px;">.</span></div>
Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com2tag:blogger.com,1999:blog-4826375687128100860.post-69020549489428787452017-08-09T16:00:00.000-03:002017-08-10T15:20:47.951-03:00Marijuana Field ResearchIn order to reduce pains (arthritis, MS) and stomach discomfort, I have been trying various strains and substrains of marijuana and, more recently, various product types: shatter, oils, tinctures, pills and other edibles (brownies from a Mary Jane mix). I think I'm honing in the strains and products to get me through the day.<br />
<br />
I recently tried some 25 mg THC pills and found that they were great for reducing and even preventing pains... and giving a light buzz for about 6 hours. The effects start in about 1/2 hour after taking the pill, ramps up for another 15 minutes, then maintains its efficacy for another 5 or 6 hours. I think that the first ones I bought were Indica-based, which tends to make a person more drowsy. I want to try some Sativa-based pills in the future.<br />
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I also have an oil-based Sativa tincture. A few drops under the tongue and I feel better for a few hours. Its much more fast-acting than marijuana edibles (like the pills above) because it is absorbed quickly when taken sublingually. I think that this tincture also works to prevent pain, so is best taken before the pain or discomfort gets bad. Four drops gives about 12 mg of THC, which is about as much as you can hold under your tongue for a while until you have to swallow it. What you swallow isn't wasted: it just takes longer to affect you.<br />
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The brownies I find to be much too sweet, though if I stay up late enough and get the munchies, a half a brownie goes down very nice.<br />
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Of course, the fastest way to get marijuana-based relief is to vape or smoke dry weed or concentrates. For the day-time, a high THC Sativa weed or concentrate (like shatter) that doesn't make me too sleepy can be used as a quick pick-me-up on bad days. In the evening, just before bed, I vape my old standby: a 9/9 (%THC/%CBD) dry weed from Cannimed that usually helps me get to sleep quickly (along with sleeping pills). If I have a severe pain just before I go to bed, I take whiskey to calm it down. Sometimes I take whiskey even if I'm feeling no pain. 😁<br />
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It is now possible to get all these products from online dispensaries (usually based in BC) without a medical marijuana prescription... you just need to send them a digitized copy of government-issued ID. There are quite a few dispensaries that sell quality-controlled products and provide very clear information about what is in it. Contact me if you want to know more.Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com3tag:blogger.com,1999:blog-4826375687128100860.post-49130003080687954932017-03-29T11:54:00.001-03:002017-03-29T11:54:11.670-03:00ChangesMy last MRI showed more plaques and a shrinking hypothalamus. Not good news, but not surprising.<br />
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My mobility is quite obviously getting worse: mostly because of the weakness in my left leg and arm. Except for really short distances where I use my poles or a cane and someone's arm, I am only able to get around on my small scooter (EV Rider Transport) which I use in the apartment and to the YMCA and in malls/restaurants, etc. I would recommend this to anyone that still has balance and enough strength to transfer yourself to chairs and so on.<br />
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My pain continues, especially in my left hip. Since my back surgery over two years ago, my sciatic pain continues to to be almost non-existent. Lower back pain, however, continues to get worse due to my osteoarthritis.<br />
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Pain is also the reason that my stomach is often upset. For pain I take neuro pain killer, Tylenol, marijuana and whiskey. Usually they work well enough to allow me to fall asleep. I would like to use less whiskey because it causes a poorer night's sleep... but that is still better than falling asleep at all.<br />
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My night spasms are almost gone: Baclofen and marijuana takes care of that. I rarely nap during the day any longer and seem to have more energy during the day. That may be because of the Modafinil I'm now taking.<br />
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I still do some exercises (when I'm not feeling lousy), either at physio, the pool, or at home.<br />
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But the real change for me is that my kids have both moved back into town from overseas AND I have a beautiful 9 month old granddaughter who has greatly increased the joy in my life. Pain or stomach upset, it doesn't matter... all I have to is think of her and my day feels so much better. I would recommend it to anyone!Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-87945152879123860962016-12-19T13:00:00.001-04:002016-12-19T13:49:49.781-04:00FampyraI'm trying out the drug Fampyra, which is intended to help with walking. Apparently it helps about half the MSers that try it. I've been on it for three weeks. I did a walking test before I started the drug, then another one today. These are the results:<br />
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<ul>
<li>At my preferred walking speed, my pre-Fampyra times averaged 20.5 seconds, while my time after three weeks on the drug was 13.3 seconds.</li>
<li>At my fastest safe walking speed, my pre-Fampyra times averaged 16.5 seconds, while my time after three weeks on the drug was 10.8 seconds.</li>
</ul>
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It appears that Fampyra is another drug I'll be on. There may have been some side-effects the first week (perhaps a little more fatigue and stomach upset), but those symptoms are so changeable that it's hard to tell if it was a reaction to the Fampyra.</div>
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As a side note, Fampyra may be helping a little with my ability to lift my lower leg using my hamstrings while on my stomach (or, perhaps, stopping my quads from kicking in while trying to use my hamstrings). At physio last week I had better results for that exercise than I'd had in a year.</div>
Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-31915073860517048122016-05-05T20:56:00.000-03:002016-05-05T20:56:52.917-03:00Six Years Later - Part 3Coping<br />
There are many ways and things I use to cope with my various problems:<br />
<br />
<ol>
<li>First and foremost among my coping "mechanisms" is my wonderful wife, Mary. Without her help and care, my life would be very different and my quality of life would be abysmal. Mary is my caregiver, my taxi-driver, my advisor and friend. Without her most of the rest of my coping mechanisms would be less useful or even impossible. </li>
<li>Exercise - I go to the physiotherapist twice a week for most of the year. I'm lucky to have a physiotherapist who is willing to work with me despite knowing that the best we can do is win small temporary victories. I work out in the pool three times a week, except when I'm away or am feeling my occasional sicknesses. One day a week I have a half hour, one-on-one Pilates instruction. A few days a week, I do some Pilates and physio at home, unless I'm not feeling well. Two or three times a week I use EMS (muscle stim) on my left leg and my left arm. I used to do yoga a few times a week, but after my back operation I stopped due to back pain and weakness. I'd like to start again, if I can find someone who can take the time to figure out what would work for me now without risking my back too much.</li>
<li>Drugs - Lots of pills: for arthritis, nerve pain, leg spasms, cholesterol, and stomach upset (caused by some of the pills I take. I also take sleeping pills and my "happy" pills. For daytime discomfort and especially to help me sleep, I use marijuana. When the pain in my hip or back or when my stomach is real upset, I use whiskey: Wild Turkey bourbon is my favourite. </li>
<li>Mobility - While I can still get around with my poles or cane for short distances (maybe 100 meters max), for anything longer I use my scooters. I have my big scooter for longer distances and rougher terrain to go "scwalking" with Mary or "scjogging" with my daughter, Anna. I also have a small, foldable scooter for inside malls and buildings that Mary and I can lift in and out of the back of our car. I have also recently purchased a second (second-hand) big scooter to use at the cottage so we no longer have to trailer my other big scooter back and forth from home.</li>
<li>Kindness - A big help to me is that my family and friends and strangers go way out of their way to make my life easier and to put up with my stumbling and shuffling. Nice people.</li>
</ol>
<div>
There are many other coping mechanisms I use, big and small, to make life easier for me, but those are the main ones. In my next post I'll talk about my future... and it's not all bad news!</div>
Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-58718546991459780692016-05-03T17:09:00.001-03:002016-05-03T17:09:38.111-03:00Six Years Later - Part 2The Bad News: <div>
<ol>
<li>The weakness on my left side (arm and leg) has gotten much worse, meaning that I can't walk at all without a cane or poles, and even then only short distances. Stairs are becoming a real hassle, since it's getting really difficult to lift my left leg. Due to my poor walking and the icy conditions, Mary has taken to driving in front of the apartment building to pick me up, which means I haven't driven the car since last fall.</li>
<li>My footdrop continues to get worse, to the point that when I'm tired or have had a few drinks I end up just dragging my left leg behind me.</li>
<li>While I'm not as fatigued as before my liberation treatment (having to lay down, completely fagged out, four times a day at its worst) I am now having to have a nap after lunch... sometimes lasting a couple of hours or more. Strangely, if I have something particularly interesting to do, I don't feel the need for a nap.</li>
<li>Ever since my spinal surgery a year and a half ago, the arthritis in my lower back has gotten much worse. This means that I regularily have lower back pain to the point that I feel nauseated. As well, the arthritic back, perhaps rubbing against my demylinated spots on my spinal chord, causes my left leg to spasm, sticking straight out for a few seconds after I get up out of a chair or out of bed or even resisting bending my left knee when I'm laying on my back and want to draw my leg in. It feels like my quads are turning on at the same time as my hamstrings. My physiotherapist has learned that stretching the quads reduces that reaction, at least for a few cycles of exercise.</li>
<li>I seem to get stomach upsets fairly often, perhaps related to back pain and/or the very light flu-like symptoms I seem to feel every once in a while. When I get those symptoms (once every few weeks, lasting a few days), my eyes burn, my head feels stuffed up and my MS weakness gets worse.</li>
<li>While my balance is still a bit better than before my treatment, it has gotten much worse in the last year or so. Of course, it's often hard to tell how much of that is due to lost balance and how much is because of a barely responsive back leg.</li>
<li>I've had bad left hip pain and sciatic pain for many years (as my left leg and glue atrophied prior to and after my back surgery), but since the back surgery and my physiotherapy to bring back strength to my legs and glutes, most of the sciatic pain and some hip pain is gone. </li>
<li>My last MRI was not encouraging. I've got two new lesions on (in?) my brain, and my cerebellum is beginning to atrophy. At least now I have an excuse for my increasingly bad memory. </li>
</ol>
<div>
That's the main part of my bad news. In my next part I'll talk about what I do to cope with these difficulties.</div>
</div>
Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-25273551892423840012016-05-01T22:38:00.000-03:002016-05-01T22:38:30.842-03:00Six Years Later - Part 1I missed the actual anniversary by two days. On April 29th, 2010, I was "liberated". Soon after that I saw big improvements in several symptoms: in particular my autonomic functions, my balance, my fatigue. Previous to the procedure, I was expecting to be in a wheelchair within a year. So where are things six years on? Well, there's good news and bad news. <div>
<br /></div>
<div>
First the good news. My autonomic functions are still way better than they had been prior to my procedure. I haven't seen my urologist in years: he told me to only come back if things got worse again - and they haven't. My fatigue, while it's often enough a problem, is still way better than it was on April 28th, 2010. My balance is finally getting worse again, though probably still a little better than before the procedure. I'm still not in a wheelchair. </div>
<div>
<br /></div>
<div>
The bad news? Well, there's quite a bit with respect to those things that the liberation procedure didn't help in the first place. However, I'll leave that for my Part 2 of this series of posts.</div>
Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com2tag:blogger.com,1999:blog-4826375687128100860.post-37518973053824466162016-01-05T12:54:00.000-04:002016-05-01T22:19:07.019-03:00New Research on Vitamin D and MS<div>
<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;">Happy New Year!</span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;">Scientists and health-care advocates are encouraged by new research that has found vitamin D may help repair damage to myelin — the protective sheath surrounding nerve fibers — in people with multiple sclerosis (MS).</span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;">The study, conducted by the University of Cambridge in England and published earlier this month in the Journal of Cell Biology, offers significant evidence that vitamin D could one day be used as a treatment for MS.</span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;">Researchers from the MS Society Cambridge Centre for Myelin Repair found that the vitamin D receptor protein pairs with an existing protein, called the RXR gamma receptor, which has already proven to help repair myelin.</span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;">The study, led by Professor Robin Franklin, determined that the production rate of myelin-making cells (oligodendrocytes) increased by 80% when added to brain stem cells where the proteins were present.</span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;">Further study is needed to determine whether the results found in the lab hold true in patients with MS during clinical trials. </span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;">An estimated 100,000 Canadians have MS — the highest prevalence rate in the world. The Vitamin D Society, a Canadian non-profit group organized to increase awareness of the many health conditions strongly linked to vitamin D deficiency, is following the research closely. The organization encourages Canadians to be proactive in protecting their health and have their vitamin D levels tested annually.</span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;"><br /></span></span></div>
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<span style="font-size: 29.8962px; line-height: 23.1532px;"><span style="font-family: Arial, Helvetica, sans-serif;">In Canada, approximately 12 million Canadians do not meet vitamin D blood level requirements of 50 nmol/L set by Health Canada and the Institute of Medicine. This figure rises to 14 million — 40% of us — during winter months.</span></span></div>
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Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com1tag:blogger.com,1999:blog-4826375687128100860.post-34849676539507304892015-07-18T19:19:00.002-03:002015-07-18T19:19:58.246-03:00A Day-Time-Pot DiscoveryI've been trying several different strains of pot over the last couple of months, trying to find something that helps with pain and/or gives me a psychological lift during the day. I've found one that I think I'll stick with: Special Premium Electric Kush (http://store.medpotnow.com/super-premium-electric-kush.html). It isn't perfect, but ithe gives FAST, fairly LONG-LASTING pain relief and a bit of a high without too much dizziness or loss of balance. If you want some help with those symptoms, you might want to give it a try.Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com1tag:blogger.com,1999:blog-4826375687128100860.post-73611831683570833512015-06-13T18:40:00.001-03:002015-06-13T18:40:24.361-03:00Heat IntoleranceI think my heat intolerance may be increasing. The normal symptom is that the lower half of my left leg swells a great deal when the temperature is high but, more recently, I've found that I have less strength and more stomach upset in hot weather. I can certainly still enjoy a warm (or even hot) day for a period of time, but if I'm in the heat (especially muggy heat) for a while, I start to see the effects.Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com1tag:blogger.com,1999:blog-4826375687128100860.post-4881536439315604582015-06-13T12:09:00.000-03:002015-06-13T17:51:53.178-03:00Update on My Weed Experiences (Part 2)Lately, I've again started feeling lousy during the day (somewhat like I was feeling for almost a year before my back surgery). That has made me rethink my decision not to use Marijuana during the day. Also, since Mary is now retired, as well, my need to drive during the day has declined since she can usually do the driving.<br />
<br />
But then my problem was to find the right strain and sub-strain of weed that would reduce the daytime nausea, stomach upset (and sometimes pain) while energizing me and not make me drowsy. The 22/1 Cannimed product I got for that purpose seemed to make me too drowsy, but how could I try other products from other companies without going through a long, time-consuming process of registering with another company. After a search on line I found a dispensary in Vancouver that would mail me a "variety pack" of one gram samples of several sub-strains and hybrids that might give me the effects I wanted. I still needed to register and provide a copy of my prescription, but the whole process, including ordering the variety pack, was completed in one day, rather the several weeks it takes with Cannimed.<br />
<br />
I've tried two of the five sampler products I ordered from the Vancouver dispensary and, so far, haven't found one that I'm completely satisfied with. I'll just keep trying.<br />
<br />
<b>Update on my update:</b> Just tried my third sampler. Chocolope OG seems to be working much better than the others I've tried. Nice. Two more to try in the next few days, then I'll probably go through them all one more time to make sure.Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-61280264066121169192015-06-12T17:11:00.002-03:002015-06-13T16:49:57.671-03:00Update on My Weed ExperiencesI've been using marijuana for just over a year now, and it's time to tell you what I've experienced, so far.<br />
<br />
For most of that time I've been using a 9/9 (9% THC, 9% CBD) product from Cannimed, one of the suppliers licensed by Health Canada. That particular product has helped me with pain and insomnia, so I take it just before bed, using a Solo Arizer vaporizer. It may help with night leg spasms as well, but since I've been on Baclofen for most of that time, it's hard to say.<br />
<br />
I haven't followed the doctor's advice about taking a daytime version because some of my worst pains have been reduced since my back surgery in October. However, lately some symptoms I've been having have made me rethink that. I'll talk about that in my next post.Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-27556419334364150372015-02-27T13:27:00.000-04:002015-02-27T13:28:08.793-04:00Still some pleasures possibleWe've only got a week and a day left here in Samara, Costa Rica. The weather has been great, maybe a bit hot (my left foot swells like a sausage in the heatand it's been a dry 35 almost every day), but I get into the pool for a couple of physio sessions every day. Our place (Villas Kalimba) has been perfect: great accommodations, nice pool, close to the beach (though I haven't gotten into the ocean yet - waves are too big). Internet connections were a bit flaky, but given the number of devices connected in the 7 villas around here, it's not a surprise. We're closed to many restaurants I can get to on my poles, and many other we can reach with my wheelchair. We make quite a sight, I'm sure: my sister Marilyn opening the road, Bela the dog behind her, Mary pushing me in my "mustang" wheelchair, Gerri behind all of us holding my poles like they were spears.<br />
<div>
<br /></div>
<div>
Wednesday we all went up for gyrocopter rides at a place a few miles out of town: it was a wonderful experience: <a href="http://youtu.be/TZO1ZM-TuC4">http://youtu.be/TZO1ZM-TuC4</a> </div>
<div>
<br /></div>
Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-2641376352705928152015-01-01T11:51:00.002-04:002015-01-01T11:51:39.819-04:00Grass, Baclofen, Wild Turkey, SleepingIt's been over 8 months since I started taking medical marijuana for pain and to help me sleep. I've rarely taken the daytime stuff (22% THC, 1% CBD), but every night I vaporize a small dose of the night-time version (9% THC, 9.5% CBD). Lately, I seem to have gotten my bed-time routine right: two zopiclone (sleeping pills) about 1 to 2 hours before I intend to sleep, and then a dose of marijuana 15 minutes before sleep (it takes about 10 minutes to vape it). I haven't had a sleepless night for a month, almost always falling asleep between 1 and 2 AM. There have been times, though, when the residual discomfort or small pain in my incision site have also caused me to take a good stiff drink of Wild Turkey (bourbon whiskey). While the grass takes the edge off the pain, it sometimes isn't enough if I'm not too sleepy, and the whiskey quickly dulls pain and makes me sleepier. It's very short relief, but usually enough to get me to fall asleep, and then I sleep all night.<br />
<br />
Just before my infection, I had stopped taking my baclofen because I thought that might be what was making me feel week and tired. Now I'm back up to 4 a day to help resolve my night leg spasms that were coming back. I may even go up to 5 and see if that works better.<br />
<br />
By the way, after a lifetime of sleeping on my stomach, during my hospital stay I learned to sleep on my side. In the mornings my lower back arthritis is much better than it used to be, and I'm sure that sleeping positions have a lot to do with it. Now if I can just find the right combination of head and body pillows to keep my spine straight, I'll bet I'll be able to reduce the pain even more.Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com1tag:blogger.com,1999:blog-4826375687128100860.post-9525670042618731582015-01-01T11:24:00.002-04:002015-01-01T11:24:31.651-04:00Hope for a Better 2015Most of 2014 was pretty much a write-off. Oh, it started great (visiting my daughter and friends in Oz and NZ) and it ended great (my daughter and Simon visiting for a long spell at Christmas and New Years, and even Ukrainian Christmas), but most of the time in-between I was not feeling great. I had no appetite and lost 25 pounds, didn't feel much like doing physio, Pilates or yin yoga, had problems sleeping and/or sometimes was sleeping too much. Sure, I did have good things happen - friends from Oz visited, we spent quality time at the cottage, my mobility scooter made life easier and more fun - but things just didn't feel right. Finally, just after the annual Harvest Jazz and Blues Festival, it hit: a streptococcal infection in my spine, next to my spinal chord in the L3, L4 and L5 vertebrae area. This caused huge and very painful back spasms and my MS symptoms (especially related to weakness and mobility issues) to hit the roof. The surgery required shaving away some backbone to drain the abscess, hopefully reducing the spinal stenosis that may have led to much of my hip and sciatic pain in my left leg.<br />
<br />
I really don't remember a lot about those times. I hardly even remember my daughter visiting me the first time. Maybe some of it (pain, horrible and embarrassing MS symptoms) I just don't want to remember. I do remember progressing from not being able to transfer from one chair to another without help to being able to do short walks with a 2-wheel walker. Luckily, I got out of hospital two days before my son left for his teaching job in China.<br />
<br />
Since my operation on October 4th, I've been recuperating steadily but slowly, though the improvements seemed to have stopped now, perhaps even regressed a little, with stomach upset seeming to be an ongoing problem. Given all the penicillin I got (mega-doses for 6 weeks after the operation), it shouldn't be an infection anymore, though it could be that my stomach ecosystem hasn't yet recovered from all the antibiotics. What has improved greatly and stayed better is a huge reduction in pain in my left hip and leg. I hope that is due to the removal of the spinal stenosis, but it could be also due to the reduction in my walking. While I progressed to a four-wheeled walker and, finally, to using poles and a cane again, the winter weather and ice and snow keep me inside and sitting a lot. I sure hope no more health problems keep me from taking our 5-week vacation in Costa Rica at the end of this month.<br />
<br />
I wish all of you a happy, health and prosperous 2015.Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-10335516405777755102014-11-16T16:25:00.000-04:002014-11-16T16:25:03.091-04:00Almost Two Months of Hell<div class="MsoNormal">
On September 24th I was taken to emergency at the DECH in
Fredericton with acute back spasms. After a week of diagnoses and painkillers,
I was taken to the neurological unit at Saint John Regional Hospital. On
October 4th they operated on my back, removing an epidural abscess caused by
streptococcal infection. After some healing and then physio in Saint John, I
was brought back to the DECH for a few days, getting home on October 20th. Since I've been on a antibiotic pump that gives me a megadose of penicillin every four hours, with extramural nurses coming to our apartment to refill it every
morning. As of last night, I'm finally free of that!</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The infection really ramped up my MS symptoms, to the point
where I was not even able to transfer myself from one chair to another. Since
the surgery I've gained some of my strength and balance back, but I still have
to use a walker to get around, which means I’m still much worse than I was
before I was infected. In particular, it really feels like the vertebrae in my
lumbar region [where the surgery was] are rubbing against my spinal cord
causing much more spasticity in my walking. I've been wearing a back brace when
I'm sitting up in a chair or walking around for any distance, but I don't know
that it's really helped reduce the spasticity, especially now that my back is
somewhat stronger. I'm hoping that, when my healing is finally done, I'll be
back to being able to do what was normal for me before the infection.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
On the bright side, I can always hope that the surgery has
reduced the stenosis in my spine. Certainly my hip and sciatic pain (and some
other symptoms) are way less than before my surgery. I don't know if that is due
to surgery or just the fact that I'm not moving around much these days. Guess
I'll have to wait and see.</div>
<div class="MsoNormal">
<br /></div>
<br />
<div class="MsoNormal">
Between the infection and painkillers, I was in a fog for
most the time that I was in the hospitals. I hardly even remember my daughter’s
first visit (before surgery). I'm sure glad that I got home before my son left
for his teaching job in China, and that my daughter had a second opportunity to
visit us at home.</div>
Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-20013305632795092792014-10-04T21:56:00.001-03:002014-10-04T21:56:32.508-03:00My Spinal Surgery: Will It Help MS Symptoms? For those of you who weren't aware, I've been in hospitals (Fredericton, Saint John) for the last 1 1/2 weeks. It started as painful lower back spasms (L3, L4 & L5) on Tuesday the 24th which could only be semi- treated with morphine, and super elevated MS symptopns: couldn't walk at all, completely exhausted and dizzy, etc. An elevated temp suggested they should check blood cultures and start a regime of antibiotics. When they got the cultures back, they were able to detect that I had a bacterial infection. The pains I had been getting were being treated with a coctail of penicillins (which had since migrated to the tail-bone, and were no longer spasms) suggested I might have spinal infections. As my temp ( and infection) went down, my MS symptoms improved. (NOTE: These MS symptoms waxed and waned for a few days at the same time my temp went up and down a few times).<br />
<br />
Then I was transferred to Saint John hospital, so the neurosurgeons there would advise whether surgery was a valid treatment for my problems. Eventually they did. For me there was the added potential benefit of removing or reducing a stenosis in my L3/L4/L5 area, a stenosis that may have been contributor to poor walking, pains in my lower back, and general weakness.<br />
<br />
I had the surgery this afternoon. There was at least one big spinal - area abscess filled with pus they cleaned out. I didn't talk to the neurourgeons yet, but will find out the details tomorrow regarding things like the stenosis. My hope is that this spinal surgery takes me back, symptoms-wise to where I was when I came back from CCSVI treatment in Poland in 2010. You'all cross ya fingas now, ya hear? :-)Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-69229239661117566152014-08-17T17:06:00.001-03:002014-08-17T17:06:26.322-03:00Wild Turkey and GanjaIt's over four years since the CCSVI treatment I had in Poland gave me back my balance, most of my energy, and greatly improved my bladder issues. These are no small things, but the treatment did nothing (as far as it’s possible to tell) for the continued weakening of my left arm and leg (including foot drop). As these symptoms continue to get worse, my walking has become more unnatural, thereby leading to hip and knee pain. That, along with pain symptoms from my osteoarthritis and degenerative disease in my spine, means I’m in pain (or at least great discomfort) almost all the time, and I’ve had great difficulty sleeping.<br />
<br />
Besides arthritis medicine (which I know helps because of how my arthritis flared up when I had to go off it for several months), I have no other traditional medicine for the pain, in part because of all the potential side effects of the pain medication. I do yin yoga (helps quite a bit) and have acupuncture/massage once in a while, but I find that the most effective immediate (very short term) relief for some of the pains is a good shot of whiskey (Wild Turkey bourbon is best) and 9/9 (9% THC and 9.5% CBD) marijuana just before going to sleep (takes the edge off the pain and makes me drowsier so I can fall asleep). I also have a prescription for 22/1 marijuana for pain during the day, but am not taking it since I can still drive.<br />
<br />
So, my question is: what are other MSers experiences with taking high THC marijuana throughout the day for pain, spasms or fatigue reasons? I guess I would like to know what, besides my losing the ability to drive, might be the trigger points I should consider that tip me over the edge to starting to take high THC grass. By the way, there are days I don’t have to drive at all, so I could experiment with it on those days.<br />
<br />
Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-4880542910978895712014-08-17T17:01:00.003-03:002014-08-17T17:01:44.746-03:00Time to Stop Baclofen?I visited my Neuro on Tuesday, were she suggested, among other things, that I up my dosage of Baclofen since I seem to have been tolerating it so well. However, since adding one more pill per day, I have felt weak and dizzy. It suddenly struck me that baclofen could be the cause of my increasing weakness and reduced balance. I'll be back to my normal dose today, then ask the neuro how quickly to reduce the dosage to zero so as to try life without it for several months. It'll almost certainly be a trade-off (more leg spasms, less weakness and dizziness), but going off it for a while should give me a better idea of what those trade-offs are.Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0tag:blogger.com,1999:blog-4826375687128100860.post-29752834753821950682014-07-07T15:54:00.000-03:002014-07-07T15:54:00.991-03:00Simvastatin<div>
Just got this note from a SPMS friend:</div>
<blockquote class="tr_bq">
Hi Ted glad to see you are doing good. Wonder if you heard of the
medication Simvastatin which is use for lowering bad cholesterol in your blood
,this medication is used on patients with Secondary Progressive MS, high dosage
80mg, it seems to have good results for slowing down the progression , this of
course is still clinical trial,but it's something. I am starting on it. Your
opinion would be appreciated since we have the same type of MS .My neurologist
agreed with me so I am excited about it. Best Regards.</blockquote>
Has anyone else out there had experience with Simvastatin for SPMS?Anonymoushttp://www.blogger.com/profile/01859151938759155854noreply@blogger.com0