Tuesday, August 23, 2011


It’s been a very long time since I’ve written a blog so naturally it’s going to be a long one so bear with me. It’s almost four years to the day that I found my life turned upside down; my wife was leaving me, our house was sold, I would no longer be with my children and facing a new life of being alone with a pretty bleak outlook for my immediate future. The Calgary real estate market was on fire, prices were through the roof which was great for the sale of our house but also translated into a very low vacancy rate and very expensive rent. $1,000 a month was about the maximum I could afford for rent and that would barely get a one bedroom basement suite which would not accommodate my children at all. I felt hopeless and screwed! I had met someone facing a similar situation and the opportunity for a roommate would solve some of my financial woes. The only problem was that he needed to live in Strathmore which would mean at least a 45 minute drive to see my kids and there were virtually no houses for rent. There was very little I could do so I turned everything over to God and He answered my prayer! In perfect timing I had met a great new friend and we had found a beautiful home with plenty of room for both of our children that was affordable! I was now living on my own in a great new pad, the bachelor life had begun.

It is also close to four years that my MS difficulties were becoming my new reality. Work was becoming very difficult on me leading to some very negative issues and I unwittingly found myself in my doctor’s office explaining my work problems and left with orders to take a week off. Things moved fast from here once the MS clinic was informed and my neurologist got involved recommending that I should be on disability. I didn’t even know if this was possible given that I had a preexisting condition and as it turned out I had just made it past the 2 year employment requirement to qualify, perfect timing again! Even though my income was reduced, with the income generated with the investment of the money from the sale of our house I was financially alright. Again the Lord hath provided all that I need!

I was now getting used to being on my own and living the life of a bachelor, albeit relatively tame. I had some negative experiences with women that led me to believe that I would not find a woman able to look past the MS and enter a serious relationship. Although this was disappointing and discouraging I was okay and kind of prepared for it since MS was the reason my wife left me in the first place. Life was good and I was enjoying my new found sense of freedom. This is when I began researching stem cell treatment and became determined to travel to China for the therapy. I had no idea how I was going to come up with over forty thousand dollars to do this but again relied upon my faith, prayers and guidance from God. In just over four months I had raised all the money and was on my way across the world on a journey of hope to alleviate some of the devastating effects of this terrible disease. It was a very successful trip even though I didn’t maintain any significant and lasting improvements. I lived through the ups and downs of this disease and always maintained a positive attitude and lived a happy life actually feeling blessed with all that I had (multiple sclerosis excluded).

Then came the best news that has ever hit the world of MS, the “Liberation Procedure” was discovered which offered great hope! Being a devoted and diligent researcher into anything MS, I learned of this advancement early on and quickly had a new goal! To undergo this new treatment was like winning a lottery but again I was determined to do everything I could to get the treatment. My goal was to make this happen within 6 months of learning about it which was extremely ambitious but I am a very strong-minded and optimistic person. I did get accepted for the procedure by a doctor in New York but he was shut down shortly after that. Not to be deterred, I was able to find another doctor to do the treatment however I would have to travel to Egypt! This was becoming a crazy time in my life but it was all good and positive changes were happening all around me. The fact that my children lived so far away was one situation that I was not happy with and the cause of much frustration. I had coped with this for close to three years until finally the opportunity came around to move closer. I would still live with my roommate but my monthly expenses would actually decrease, I had a great house on a beautiful piece of land located only 10 km from my kids! It was so much more convenient and I was able to spend a lot more time with my kids. This was turning into a pretty crazy spring full of unexpected but glorious opportunities! Then the best development I could have ever hoped for occurred, I met a beautiful woman who was sincerely interested in me! We seemed like a perfect match right from the start which solved another looming problem for me…I now had someone to travel with me to Egypt. We had an awesome trip together and I underwent the “Liberation Procedure”, one month sooner than my original goal of 6 months. It was amazing to me how God was working in my life and even though I didn’t experience the remarkable improvements that some MS patients had, I did see benefits and who knows what the future holds.

It took over 3 years for my life to turn around from the disastrous day that I had to leave my home, my children and life as I knew it. Now at the four year mark things are happening that I never dreamed possible. I never thought I would marry again but I’m now engaged to a fabulous woman and I’ve truly found love again! I never thought I would buy another house yet in one week I’ll be moving into our beautiful home! I had given up on the idea of ever having my children live with me again but now I will have shared custody and enjoy a loving home with my kids again. Things have completely turned around from that day of hopelessness and anguish and through it all I never lost my faith or trust in God, I have always been thankful for the blessings I have received. All I can say is, God is great! So life as I have known it for the last four years is about to change again, hence the end of an era and a new one begins!

Now for my health update…I’ve been holding my own throughout the summer but there have definitely been ups and downs. There have been times that I have endured much grief because of the neurological pain in my chest/arm that I have described before. This has been a different experience though, it had changed from the temporary sharp stabbing feeling to a more dull but constant soreness. At times this would be with me for well over a week but it would still come and go. It is uncommon for me to live with this type of continual pain due to MS but fortunately it is on and off and it hasn’t bothered me for a long time now. I have been working out but not the way I want. I’ve had a nagging injury with my right arm and shoulder that has bothered me for several months now and has put severe limits on what exercises I can do. It hurts too much to even do a push up so my upper body exercises have really suffered. I have been using massage and just hoping that it will eventually heal but this isn’t happening so I’ve decided to start physiotherapy. If it doesn’t start to get better soon my doctor will send me for an MRI.

Outside of that I’ve just experienced the usual MS issues that I’ve dealt with for years but no attacks or serious progression. Just recently I have gone through some severe agony however this is not solely related to MS. I have a kidney stone; well it’s in my bladder now so I’ll call it a bladder stone. It is common for this to be associated with a lot of pain; they say it’s the closest comparison for a man to understand the pain involved with child birth. My agony has not actually been related to the passing of the stone but rather the associated complications. The stone is 1.1 cm in diameter so definitely too large to pass. My doctor wasn’t sure how long it would take to get me into a urologist so she said if it gets bad go to emergency and they will have to deal with it. Well trouble began the next day so I found myself in emergency but fortunately they brought me in right away. I was having difficulty urinating, getting any kind of stream going which is not totally uncommon with my MS bladder issues but this was unlike any MS problems that I have had in the past. After consulting with the MS clinic the doctor concluded that my problem was more likely related to MS than the stone so he sent me away to just live with it until I saw the urologist and I already had an appointment scheduled with my neurologist in September. So I went home but found myself sitting on the toilet for over one and a half hours trying to urinate but I could not get anything out, not even dribbles! This was becoming very painful so I rushed back to emergency expecting to get back in right away considering I still had the hospital bracelet on from earlier…no such luck! It was quite busy now so I was sent to the waiting room rocking back and forth on my scooter in pain. This was becoming more than discomfort, I was reeling in pain and after close to two hours of this I couldn’t take it any longer! I went back to the admitting desk to ask if I could just get a catheter kit and I would do it myself, I was in so much agony that I was totally serious. My distress was now obvious so she made a call and told me to wait down the hall and a nurse would be out in 5 or 10 minutes. It was going on about 5 hours that I just couldn’t go so you can imagine how much I was hurting so when the nurses finally had me in a room I wasn’t interested in their explanations of what was going to happen or any attempt to alleviate the tension or nervousness that any guy would naturally feel about the traumatic procedure that was about to occur…I didn’t care, just stick it in was my attitude! Finally some relief, it was torture! Actually this was a means of torture used by Caligula one of Rome’s most tyrannical emperors, now I can directly understand how terrible that dude really was!

After I finally found relief I wasn’t allowed to leave until the doctor came around, frustrating because this took almost 2 hours! I had informed them that my urologist appointment was set for August 25th and when the doctor finally came he told me that I would have to leave the catheter in until I saw the urologist. You’ve got to be kidding me, that was 8 days away!!! This all happened the day before my 43rd birthday…what a happy birthday this was going to be. I now have two days of suffering left, and suffering is an accurate description. The irritation and pain caused by a tube inserted into what is an extremely delicate and tender part of the male anatomy is real and has not left me since day one! I spoke with the MS clinic for a second opinion and because I was worried that having a catheter in for so long might negatively impact my already dysfunctional bladder muscles but the consensus was that it would be alright and was the best plan of action if I could handle the pain and discomfort. This urologist better have some relief for me! Hopefully the stone is the major factor rather than an MS issue and it can be taken care of quickly.

So having explained some of my newer health problems, some of which are not even MS issues, it would be natural to assume that I would be upset, frustrated and even mad. However by now you must know that my belief system categorizes those feelings as counterproductive, negative and even harmful. Don’t get me wrong, I’m not superhuman and I am choked, disappointed and fed up! I have enough problems to deal with as it is. It’s already difficult enough to exercise and workout, why must I endure additional problems that make it even harder? I have enough pain issues, why pile even more on me? I’ve coped with bladder and bowel issues for years, why not just add some more to it? Seriously, I have enough problems, why must God continue testing me and pushing my breaking limits? Of course I don’t have that answer but things keep happening that force me to ask the question again and again! I suppose it builds my resolve and reinforces and builds my faith even stronger. This has been my situation for many years; shit happens now deal with it!

Going back to the first part of my blog is what gets me through it. I realize how God is working in my life and how blessed I am. Look at how He has turned things around in my life, taken me from a state of complete brokenness and hopelessness to a state of happiness where I can feel grateful and find joy and peace. It’s a lot to go through and a lot that I just can’t understand but fortunately my belief is solid that it’s all in God’s plan and He most assuredly does understand and to that I must say: PRAISE GOD!


Saturday, May 7, 2011


Well it’s been quite some time since my last update so of course there is a lot that has happened in that time. I left off describing the conditions leading up to a new attack and yes the symptoms progressed into what I can now confirm to be a new exacerbation. I stated that I wanted to jump on things early and within two days of my last posting I was on the prednisone treatment. The same old scenario of the dreaded high dose steroids but I believe it was the right decision because it seems to have tempered the negative symptoms that were developing. It’s sometimes hard to determine the effectiveness of the treatment because the difficulties that I experience are always with me but the key is that things did not progress to the point of becoming extremely problematic. My balance was definitely impacted but not something an outsider would notice compared to my regular mobility problems. I also experienced a significant increase in the neurological pain to my upper chest and armpit area as well as a noticeable decrease in energy and strength. I do believe the steroids were successful because no new problems developed and the difficulty that I did experience was manageable and did not escalate into a serious impediment to my everyday life. It has been a somewhat long recovery though, for two months now I haven’t felt the energy or strength to exercise or workout. Again not really apparent to others but I could certainly notice a difference, my hands and wrists would go through extreme fatigue just using my pepper grinder! Any way things are starting to improve, I did start back at the gym this week but it wasn’t easy. Two months off might as well have been two years, I don’t feel nearly as strong but I know that I’m probably still in a recovery stage and it just takes time.
I do notice more difficulty in walking; I’ve gone from slow to slower if that was even possible! Just picking my feet up is a major challenge and my lack of energy/fatigue is still somewhat of an issue. The pain in my armpit has been extreme at times and very frequent. I can initiate the pain by the movements of washing my hands and the water from the shower head hitting the right side of my body and shoulder will also bring it on! There are many other instances that bring the pain on but these two examples of washing have been consistent triggers. Maybe I should learn to live dirty…not! The good news is that as recently as yesterday and today these two triggers have stopped causing this painful reaction. I hate making a claim like that because sometimes it will jinx me and I’ll end up back at square one but I’m going to take the positive hopeful position.
I saw my neurologist on March 30th and we had a good chat, he spent over an hour with me. I always try to make my appointments for the end of the day so he doesn’t have to rush me out of his office to see another patient. The results of my MRI were good, no new lesions even though I just had an attack! Because I had an attack does not mean that the Tysabri is not working, relapses are still possible even when on medications, it’s just disappointing that I had one! As long as I have no new lesions I’m happy. Whether this is a result of drug treatment or the “liberation” procedure, I don’t really care as long as the disease is not progressing with new activity and brain lesions. I already have my next MRI scheduled for September so we’ll see what happens. In terms of the “Liberation” procedure, Dr. Yeung is not ready to form a definite opinion yet; there is still too much data to be studied. He has a handful of other patients that have had the procedure and all of them had similar results as me. Initial improvements in several areas but after 3 to 5 months they seem to fade away. So the jury is still out on the treatments effectiveness and causal relationship to MS. As more study results are released it seems there is contradictory evidence emerging all the time, not surprising! Bottom line is that a lot more information has to be developed and analyzed before a final determination can be made. In the meantime advancements in diagnostic techniques and angioplasty procedures are growing. I attended a CCSVI seminar where Dr. Hewitt from Synergy Health spoke. Synergy was developed as a separate entity from Pacific Interventionalists in Southern California specifically for testing and treatment of CCSVI. Dr. Hewitt and the other physicians have over 60 years of experience treating vein diseases and have performed more CCSVI procedures than most doctors across the globe to become a world leader in diagnosis and treatment of CCSVI. Dr. Hewitt’s presentation was very informative and I would definitely use this facility for any future testing or treatment.
However, until that time comes, I along with others have to deal with the conundrum of whether to use MS drugs or not. I have made the decision to stay on Tysabri even though there is no clinical proof that it is beneficial for secondary progressive. There are many new drugs coming to market such as Gilenya which is an oral medication recently approved in Canada. Biogen and Teva are both working on new drugs and there are at least three other oral medications coming. The world of MS is rapidly changing, so much that Dr. Yeung says it is difficult to keep up. He commented that sometimes he’d rather sit at home flipping around with the remote control than try to keep up with all of the new developments. There is still a huge mistrust with pharmaceutical companies especially with the recent news of kickbacks to neurologists from Merck Serono for prescribing certain drugs. Serono just agreed to pay over 44 million to settle claims regarding allegations in connection with the marketing of the drug Rebif. This is just the tip of the iceberg; a lot more news has come out and will come out against pharmaceuticals for similar fraudulent and unethical practices. My favorite neurologist Dr. Freedman (huge sarcasm!!!) has disclosed personal compensation and grants from almost every pharmaceutical company and he was one of the staunchest opponents to CCSVI and stem cell therapy, he’s a complete sham and I feel so vindicated in my writings against him! So the debate over the use of MS drugs and other alternative treatments is far from over making it difficult on patients to make informed decisions and to know who to trust. What a sad state of affairs!
On to other issues, I think the change in weather has had a positive effect on me starting to feel better. What a terrible winter and spring we’ve had to endure here in Calgary but I think the actual spring season is finally upon us! No one can actually say this until the May long weekend has passed but I have seen some convincing evidence. As I have probably stated in past blogs, I live on a huge section of land outside the city in a farm setting. There are 14 peacocks that live here as well and they have been hidden until last weekend when they finally made their way out of the barn. I think they have the instinctual sense to know when winter is over, they have all of their colorful tail feathers back and the constant squawking has begun but it’s a welcome sound at this point!
On an even more positive note, I have just recently made the announcement that I am now engaged!!! Going back to some of my earlier blogs, who’d of thunk it! Our wedding won’t take place until June of next year but it’s amazing how fast a year goes by! Ever since I took Lorelei to Egypt with me, we’ve developed a special bond and our love for each other has flourished! Lorelei must be special because I actually let her name my scooter Lola, certainly not a name I would have chosen. Speaking of Lola, she’s seen better days; I don’t think she’s long for this world. That is really too bad because I just can’t live without a scooter and purchasing a new one was absolutely not in my financial plans, especially with my impending wedding on the horizon! She’s been good to me over the years, I’ve had some amazing journeys with her across Canada, the United States, Mexico and even overseas to Europe and the Middle East! It will definitely be a sad day when she goes to scooter heaven.
All in all this is a very exciting and happy time in my life. I have been patient for years waiting for God to answer my prayer for a new love to enter my life and He has now lovingly answered my prayer. I have been far more patient with my never ending and persistent prayer for healing. God has not found it in my destiny to answer this prayer yet but I will continue to pray each and every day! He is faithful and the source of all my hope and strength. He continues to bless me abundantly and for this I give Him my never ending thanks and praise!

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!

Thursday, February 3, 2011


So the year is 2011, I wonder what will the coming year have in store for me? 2010 was a year full of unplanned and unexpected events, some good and some bad. A lot happened in my life and nothing was planned or foreseen, things just happen and that’s life, we just have to learn to roll with it. For me that means trusting God and the plan He has for my life. This is not to say that I won’t make plans for myself and set my own personal goals, I just pray that I can stay on the path that God wants me to follow whatever and where ever that may lead. Who knew that 2010 would be the year that I’d find love and companionship again, something I couldn’t plan for but a long standing prayer finally answered. I also had a goal to be tested and treated for CCSVI but who would have ever thought that goal would lead me to Egypt! As much as we’d like to believe that we can control our destiny and the detailed happenings of our life, ultimately it is out of our hands. Not that we can’t affect the outcomes we experience through our individual actions and behavior but we must realize that even the most well thought out plans can come crashing down around us at any moment, hence my trust and faith in God! My true hope is that I will not experience any further progression with my MS symptoms and disabilities.

Having said that, I am still feeling pretty good although I have recently had some new difficulties arise. Actually they are not new; I just haven’t had to deal with this issue for a very long time. It is another neurological pain that I get in my shoulder and armpit and like always there isn’t any particular movement that seems to trigger it. It’s frustrating because there isn’t anything I can do to alleviate or prevent the pain. It is a sharp piercing type of pain that elicits an involuntary type of yelp as though I was just stabbed. Although this pain is new for the moment, it is a recurring problem from the past so I do not consider it as a new symptom or indication of an attack, just another issue to deal with. I was worried that it would hit me as I was working out but it hasn’t happened. I also thought it might affect me while I was skiing but again I was fine. It’s one of those things that I just have to wait out and eventually it will disappear on its own. About a week ago I thought it was gone because I hadn’t felt it in several days but it turns out that was just wishful thinking because it’s back however the pain is different now. Instead of being an instantaneous reactionary type of pain, it is now less intense but prolonged for many seconds and occasionally for up to half a minute. It’s more than something that comes and goes very briefly, I can experience prolonged periods, several hours at a time when the pain is not constant but very active throughout the entire time period and then it will fade away until the next episode starts again. I haven’t felt it today but that doesn’t mean it’s gone, problem is nobody knows when and if it will return.

I continue to stay active working out at least twice a week and skiing every Friday evening. I really enjoy skiing, it feels great to participate in a sporting activity and watch my abilities improve week to week. I was fortunately able to pick up right where I left off last year and each time out I get better. The conditions were very difficult last Friday because we had such warm weather throughout the week there was a lot of melting happening and by Friday evening it was snowing heavily and the temperatures had dropped resulting in the entire ski hill transforming into a huge sheet of ice! Then to make matters worse huge ruts had developed when the snow was soft and had now turned hard with the drop in temperature but worse yet was the problem that everything appeared fine under a covering of fresh new powder! Well everything wasn’t fine, quite dangerous actually. The supervisors had warned against going to the top and suggested to use the magic carpet or the snowmobiles to only go partial way up the hill. I tried that for my first run and then said “forget that noise, let’s jump on the chair and go to the top!” Well on my first ride up the chairlift we saw at least three injury wipeouts and a few people that had actually removed their skis and were walking down the hill! It was pretty crappy but I made it down fine, only a couple of wipeouts. I only did a few more runs that evening but I was quite impressed with myself as were my CADS ski partners!

In terms of follow up to my angioplasty procedure, I have an appointment with a vascular surgeon in March as well as an MRI. The MRI is scheduled to review the status of my brain to ensure that there are not any issues developing from my use of Tysabri. Everything feels fine but they are very cautious with the use of Tysabri these days. It will be very interesting to see if any new lesions have developed and what if anything has happened to my existing lesions. My appointment with the vascular surgeon will be even more interesting. I’m not expecting much but I am very curious to hear his thoughts on my collapsed jugular and his recommendations for what I should do next. Unfortunately I still won’t have the CD of my procedure; I don’t expect I’ll ever get that now. Dr. Sinan had told me that he would try to get this information from Dr. Sameh who runs the imaging in Alexandria but I’ve been down that road before without any success. Given the riots and turmoil that are going on in Egypt now, who knows if Dr. Sinan will even continue doing angioplasty procedures outside of Kuwait for foreign patients. I feel fortunate to have visited Egypt before any of this chaos began because the country has now changed dramatically.
Even though the country has been ruled by a dictator with an iron fist for years and years, this was not apparent in Egyptian society when I visited. However it was obviously felt by the Egyptian people given the demands for President Mubarak to step down immediately. Although I could sense uneasiness and perhaps fear of the police force and army, complete discontent with the government was not evident. I now worry for the people of Egypt regarding who will be the next to govern as it appears a hard-line Islamic regime will take over and I fear the people will fall into an even more oppressive state, women in particular. With everything that is going on in the region right now, I feel this will be a very critical and historic time not only for the Middle East but the world in general. My prayers will be with the people of Israel as significant changes take place in this part of the world! Even though I may complain about issues such as the inability to receive a simple medical procedure to treat CCSVI, I am extremely grateful to live in Canada, what I believe to be the best country in the world!

My attitude has always been to find happiness in what I do have and not lament over the things that I have lost. I feel fortunate for all of the blessing I have in my life, yes even with the challenges and hardship I face with having multiple sclerosis. It all goes back to the realization that things can always be worse! As I said earlier, I don’t know what the coming year will have in store for me but I’ll take it in stride, remain positive, thankful and hopeful. I’ll continue to take care of myself as best I can believing firmly that God has a plan for me and that ultimately everything will be alright. SMILE…it will only bring good!