Tuesday, March 15, 2011


Well I’m surprised to be posting another blog so soon after my last post and given how I ended my last blog, something interesting must have happened on my ski trip. It was interesting all right but not in a good way! The situation was actually very puzzling, I just could not figure out what was going on. It was a beautiful day and the slopes looked so inviting, I was so excited! Once I was strapped into my mono ski there was no time to waste, I was eager to get up the mountain and then right from the beginning problems began. I started pushing towards the chair lift but was having a problem because my outrigger would not stay in the locked upright position. We tried to fix it but the pin just wouldn’t stay engaged so we had to find another one and take them both apart to replace the bottom ski, not that big of a deal, maybe a half hour delay. With enthusiasm and adrenalin pumping through my veins I started pushing towards the chair again which was quite a distance. Skya, don’t have a clue how to spell his name but that’s how it’s pronounced, asked if I would like a push to which I gladly answered yes, no point in tiring myself out right from the get go. There wasn’t much of a line up and we were on the lift very quickly. It was so cool to look at the different runs and the variety of terrains, a lot different than the smaller slope I’d become used to at COP. It must have been 20 years or longer since I had experienced this type of scene and I was excited, perhaps even a little nervous. Everything was even more awe inspiring when we got to the top, then you realize you’re on a mountain, the view was great!
My ski had been changed to a much wider, twin tips ski they called it from the regular ski I had been using. We had discussed changing my ski to this during the year but it hadn’t happened so I was excited to try this new one that had been freshly tuned up. My excitement was very short lived, as I started down the run I couldn’t control it, I could not make a proper turn and fell down right off the bat! Skya pulled me back up and I started down again but the same result. This happened several more times and I just couldn’t figure out what was going on, I thought surely the new ski couldn’t have made that big of a difference. Well something was sure different because I could not do anything; it was as if I had never been on a sit ski before! I was obviously getting frustrated and received encouragement from Skya and Cheryl but that wasn’t helping, I couldn’t even connect two turns, it was just fall after fall! At this point I wasn’t too excited to be at the top of a mountain anymore, at this rate it was going to be a very long and sore trip down. I kept trying but nothing was working so eventually Cheryl called in an SOS to the CADS supervisor. Jacob had been instrumental in teaching me but even with his wisdom, experience and help I couldn’t do anything! It was going to be painful and take forever to get down the mountain so he had to hold me from behind and ski me down. That was actually kind of fun but freaky at the same time, he picked up some pretty good speed and I wasn’t in control of anything, almost like an amusement park ride. So I was finally at the bottom and we found a similar ski or maybe the same one that I had been using all year and changed hoping that would somehow make the difference. We decided to have lunch before going out to try again and afterward I figured I should just take a run down the bunny hill to test out the new ski. It made no difference, I just couldn’t ski, not even the bunny hill! Right off the bat I was down, and down again and again! Unbelievable, I was so choked and confused…what the heck happened? At this point I knew that I couldn’t carry on, I know I whacked my head a few times but the simple fact was that I just had no balance. On my last try up the magic carpet Jacob was behind me encouraging me to not give up, he was referring to next year. At this point I was fully aware that my balance problem was an MS issue, not something I could notice sitting on my scooter or using an aid like my cane or a wall for support but balancing on a single ski was just not happening. Jacob was trying to convince me that even if I couldn’t regain my balance I could still ski next year, just maybe not on a mono ski. I assured everyone that I’d be back; no way could I end things on a crappy note like that!
So that was my mountain trip, totally unexpected outcome and now more than two days later, things aren’t getting any better. Getting around is definitely more difficult and my left eye is not doing very well either. It seems as though I’m having an attack, just over one year since my last one. This disease never ceases to surprise me, I was doing really well and what an opportune time to rear its ugly head again, on the very day of my mountain ski trip! Well at this point it’s not nearly as bad as I’ve been in the past but what’s my next move? I didn’t hear back from the MS clinic today but I think I want to try and catch things early this time. Last time I had an attack I wanted to tough it out and avoid the high dose prednisone but that strategy didn’t work out too well. I eventually had to try the steroids and they had very limited effect so this time I want to try the drug remedy at the very beginning of the attack and hope for better results. I still hate taking the high dose prednisone but there are very few options when it comes to fighting off an exacerbation. The bothersome part is that I’m taking Tysabri to avoid attacks! I was scheduled to have an antibodies test on my next infusion because I’ve been off the drug and now started again they check to see if my body has built up antibodies to the drug. Why can’t my body just build up antibodies for MS!?! Anyway it’s not looking too positive for the effectiveness of Tysabri, now what?? I did shoot off an email to Dr. Moore but it’s doubtful anything will come of that. Maybe he’ll send me for another ultrasound to see if the blood flow from my brain has changed or slowed but then what, he’s not permitted to do anything about it anyway! Two of my MS blogger comrades have gone for secondary angioplasty treatments, one of them is actually on his third but I don’t think that is a likely option for me. It is much easier to receive treatment now in the U.S. but outside of my financial future at the moment. I am still interested in seeing more research results and there are many new conclusions developing from CCSVI conferences like the one going on in Italy right now. I’ll just have to wait and see what the future holds but for the moment I must deal with my current situation. Even though I’m not in terribly bad shape at this time, I know how rapidly that can change hence my proactive strategy this time around. As always nobody knows what is currently happening or what the best option for treatment is so again I will just leave it in the capable and all knowing hands of God.
Although I am very disappointed, you might even say pissed at the most recent developments, I still remain upbeat and positive, there is no other helpful or healthy alternative. I’ll keep my blog updated as things develop both with my health and treatment decisions. I’ll hopefully get in to see my neurologist before my scheduled appointment at the end of the month, I am really eager to see what my last MRI shows!
Stay tuned until then.

Friday, March 4, 2011


It’s been a month since my last blog update so I guess it’s time because there are some new things to discuss. I’ll begin with my own health update…pretty much the same which is a very good sign! I still have pain in my armpit/chest area that is even spreading to my side now. It’s not intense but it seems to always be with me, kind of like a headache that you just can’t get rid of so I just deal with it. Physically speaking I’m still feeling strong and able to get out and about to keep busy; that is outside of the extreme cold and snowy episodes we’ve had in Calgary that keep me shut in. Unfortunately we’ve experienced too much of that but hey it’s winter, what else should I expect? Well I won’t even delve into the global warming nonsense, yes just my opinion but I think the whole thing is bunk. It’s been pretty darn cold and I haven’t seen this amount of snow since I was a kid but I’ll leave it to the likes of David Suzuki and Al Gore to defend that fallacy (comments welcome). At least it made for a good ski season which is now over for me and CADS but it was a great year! I’m really happy with my progress but I don’t know where to go from here. The little slopes of Canada Olympic Park were great to learn on but I now need more. I do have a mountain outing at Nakiska coming up which will be really fun to get more than a short 5 minute run in before another lengthy chair lift. In order to qualify for the mountain trip all mono skiers had to demonstrate the ability to get on and off the chair lift alone, definitely not an easy task! Getting on is not so bad, I have to plant my outriggers on either side of me and lift myself and the sit-ski high enough for the chair to come underneath and pick me up. I could achieve this relatively easy because I do work out and I’m definitely strong enough for that but getting off is another story! As I’ve said, my butt is strapped onto this bucket and when it comes time to unload you simply can’t move like a regular person to just stand up and ski down the ramp away from the chair. I have to shuffle my body to slowly edge forward on the chair and then with momentum created with my arms, lean forward and hope to slide off the chair and down the ramp, it is very difficult! Fortunately I’ll still have my CADS ski partners with me to assist, God bless the CADS volunteers! It would not be possible for me to do it alone, I need someone to pull me upright if I wipe out and it would be near impossible to strap myself into the sit-ski alone. One thing was very evident to Cheryl who was my volunteer both last year and this year. She noticed that I’m much stronger and don’t tire or fatigue nearly as easily as last season. Hmmm, what can I attribute that to? Working out, the angioplasty procedure, maybe the new supplement I’m taking, who knows but its encouraging and exciting! The new supplement I’m taking is called Vitality; it promotes physical endurance and stamina, increased mental acuity and focus as well as sexual libido. The testimonials have been amazing but I know it has increased my energy levels, send me a message if you’d like to ask about it.
Now for another health update, I saw the vascular surgeon today, a very interesting meeting. When Dr. Moore came in he said that he had reviewed the synopsis from my doctor and went right into what my concerns were. I told him that after I had my ultrasound that I was looking for an expert opinion on the results and conclusions of Dr. Steed from the ultrasound clinic. He replied by saying “I don’t know how you ended up in my office but it’s actually a good thing, I’m on the expert advisory panel for the MS committee commissioned by the Saskatchewan government to review all the literature from around the world with the plan to come up with a research protocol for Saskatchewan and eventually other parts of the country”. When I originally asked my GP for a referral to a vascular expert she said that she had no idea who to send me to and would have to research it, she did an excellent job to say the least. Dr. Moore said he is seeing about 40 patients who have all had the angioplasty procedure and everyone has gone on to have their veins clot off, something that did not surprise him. He explained that neck veins are very slow flowing and angio essentially rips the vein open under controlled circumstance which creates a tear to the inner lining of the vein which will then remodel itself. Problem is that when you create a tear in a slow flowing vessel it clots. He went on to say that the link between whether veins are open or closed and the MS disease process is still very unclear. He’s had patients whose veins had gone on to reclot but the patient feels better (yes the placebo effect).
He explained that we have two internal jugulars, a vertebral vein at the back of the neck that is even bigger than the jugulars and the azygos system which is a network of veins the size of his arm. Going after two veins when we’ve got an entire collection of veins that can pick up the slack doesn’t make much sense to him. In my case, a secondary angio needs the vein open to get the wire in and if it’s totally collapsed there is nothing you can do. If my other jugular becomes blocked and he was to “bang” it open the risk of bilateral jugular venous occlusion can result in permanent blindness! This is a very low risk but a very bad consequence! He said the literature coming across his desk now from the U.S. and around the world can’t duplicate Dr. Zamboni’s findings so the link between angio and MS is starting to become weaker and weaker. He recommended that I follow my MS treatment program, I’ve got good flow from the left and all other veins in my neck are flowing well so unless my symptoms take a complete nose dive there is not much to be done. If my condition deteriorated markedly he would order another ultrasound and examine our options from there.
I questioned him about the expertise of the Sunridge Diagnostic Clinic and he said that Dr. Steed is an excellent ultrastenographer (new word for me) and one of a few that is a vascular stenographer which gives him a leg up on other centers. He said that for most studies they get from other centers they send to him to cross reference and verify because his results have been very accurate. So overall it wasn’t exactly an uplifting appointment but it did emphasize the need for more testing. Bottom line is that based on the data he’s seen so far he does not recommend the procedure…unless there is high grade stenosis and symptoms are markedly deteriorating. In this case, as long as a person understands the risks and has the money, then give it a try.
On a different note, I was just contacted by a new MS website called unitems.net. The site is an online community and support network for people affected by MS. The site is intended to connect with others through discussion forums, blogs, and things like expert Q & A. We have many sites and MS forums like this but it might be unique as it develops but worth checking out. The interesting part is that it is sponsored by Merck Serono; yes a pharmaceutical company that says the site is committed to unbiased content. Well we’ll see how that works out because as I perused the site there was nothing about CCSVI. I suppose it’s up to us in the MS community to address CCSVI issues. I was asked to write a guest blog for the site so I might put the test to the content and independence of the website, stay tuned.
I go for an MRI tomorrow and then see my neurologist at the end of this month. I’m very curious to see what if anything has changed in my brain during the last 6 months. I’ll write another blog to update my situation at that time. Possibly earlier if anything interesting happens on my ski trip!