CCSVI Trials in Canada

Late yesterday afternoon Hon. Leona Aglukkaq health minister nnounced the Canadian federal government would fund phase 1 and phase 2 trials for the controversial procedure discovered by Dr. Zamboni. She requested that the involved parties commence the trials as soon as possible. Apparently she was touched by the stories and interactions with patients who had received this treatment and the results attained.

I have no doubt this issue will remain controversial, the vast majority of MS neurologists are against this procedure, most were from the very beginning.

The MS Society was certainly against it in the beginning yet bowed to public pressure and announced a request for funding sometime last year, personally I believe this was too little too late.

As far as I know these studies are being funded by the federal government due to the minister's request.

Trials are normally categorized by phases with phase one's primary endpoint to evaluate the safety of this or any proposed procedure/medication approved for a trial. I received the following information regarding the results of a phase 1 trial conducted in Bulgaria. Wouldn't it be nice if we didn't have to repeat this process with the expenses involved only to obtain the same results?

I will forward this to the minister although I believe the torch has now been passed to the medical community so only time will tell.

For one thing it opens the door for communication and a proper evaluation of this procedure, the end is in sight we will know one way or another whether this procedure is beneficial for people with MS. My only hope is that the trials are not limited to people with relapsing remitting MS or are based on the criteria which exists today to evaluate the effectiveness of treatment.

Those of us who need it the most would again be left out however I suspect many doors would open that were previously closed.

　

1. J Endovasc Ther. 2011 Jun;18(3):314-23.

Safety profile of endovascular treatment for chronic cerebrospinal venous insufficiency in patients with multiple sclerosis.

Petrov I, Grozdinski L, Kaninski G, Iliev N, Iloska M, Radev A.

Cardiology Department, Tokuda Hospital Sofia, Bulgaria.

Abstract Purpose: To evaluate the safety of endovascular treatment of chronic cerebrovascular insufficiency (CCSVI) in patients with multiple sclerosis (MS).

Methods: In a 1-year period, 461 MS patients (261 women; mean age 45.4 years, range 21-79) with CCSVI underwent endovascular treatment of 1012 venous lesions during 495 procedures [34 (6.9%) reinterventions]. While balloon angioplasty was preferred, 98 stents were implanted in 76 patients for lesion recoil, restenosis, or suboptimal dilation. The procedures were analyzed for incidences of major adverse events (death, major bleeding, or clinical deterioration of MS), access site complications, procedure-related complications, and procedural safety-related variables (fluoroscopy and contrast times). The complication rates were compared to published data for similar endovascular methods. Results: There were no deaths, major bleeding events, or clinical deterioration of MS. Access site complications included limited groin hematoma (5, 1.0%); there were no arteriovenous fistulas or puncture site infections. Systemic complications included only rare cardiac arrhythmias (6, 1.2%). Procedure-related complications included vein rupture (2, 0.4%), vein dissection (15, 3.0%), acute in-stent/in-segment thrombosis (8, 1.6%), and acute recoil (1, 0.2%); there was no stent migration or fracture or distal embolization. Mean fluoroscopy time was

22.7 minutes, and mean contrast volume was 136.3 mL. Conclusion: Endovascular therapy appears to be a safe and reliable method for treating CCSVI. Innovations such as purpose-specific materials and devices are needed, as are case-controlled and randomized data to establish efficacy in ameliorating MS symptoms.

PMID: 21679067 [PubMed - in process]

Reminiscing

Every year at this time it is difficult for me not to feel somewhat nostalgic.

July signalled our guy’s getaway, an entire week of fishing in Algonquin Park.  

A place where you could spend an entire week without seeing another person and when you did encounter someone it was as if you had found a long-lost friend. I guess people are different without the stresses of everyday life.  This I enjoyed immensely. We never camped in the campgrounds rather we went to the interior of the park which was only accessible by canoe or portage.

Our primary reason for going was to do some fishing, I would love paddling my canoe and fishing in the morning as the sun rose or in the evening at dusk.  We were certainly not your regular group of campers it was always hilarious when we received our annual unannounced visit from the local fish and game warden. This you have to picture, four guys out in the middle of nowhere with the following partial list of our equipment.

Four canoes.

Two large tents.

One propane barbecue.

Two or three Coleman stoves.

Two Coleman heaters.

At least three Coleman lanterns.

Rope, block and tackle. "To keep our food at bay from the Bears".

And on and on it went, we were strictly catch and release I mean we were quite realistic in our approach.

For one thing none of us wanted to eat or go through the trouble of cleaning a bass when we could throw a porterhouse on the barbecue, baked potatoes etc.

In the interior no glass containers were permitted providing us with an excuse to each bring a 60 ounce bottle of Bacardi as these were in plastic containers.  At a time when we all smoked the one thing we did bring was a glass ashtray normally placed close to the fire our goal was to leave the premises exactly how they were upon our arrival.  Even the game warden would chuckle overlooking that ashtray.  Some years we would leave immediately after work and drive for six hours from Toronto without even stopping to take our jackets and ties off.  It was a release a great feeling.

A few years after we began this ritual I was diagnosed with MS yet in the beginning I didn't know what I had except that carrying a canoe with another guy who had suffered a heart attack was probably not the greatest idea in the world.  I made it every year for a least a dozen years.  The last few were the hardest, I recall sitting and looking out at the lake wondering if this was my last year?  Would I be capable next July?

I went with the most accommodating people in the world, we all worked together and they took care of me in more ways than I can mention.  Even on our last two outings I was in my manual chair and they still accommodated me not in the park yet we found other locations that permitted us to spend some time together yet it was never the same. Ultimately when I could no longer stand or hold on to my fishing rod I called it quits.

Some people would say that one should never reminisce about these times as they only serve to bring sorrow.   I would have agreed in the beginning yet after all these years I look back on those times with joy knowing that I was at least given the opportunity to spend some great times with a great group of guys.

After paddling across the lake we finally made it to the portage!  The rest was easy, just follow the trail .

 

 Throughout the years we had the opportunity of seeing quite a few of these creatures huge! 

However the strangest thing the group ever saw was this creature. 

The guys didn't know exactly how to take him.
As manager of the department I was always serious at work. The guys cracked up when they saw me dressed up cooking breakfast one morning. I remember one of them saying "he's nothing like he is in the office, he's nuts".  I loved every minute of it.

Welcome Summer Now Let's Turn the Heat on!

My grievance was received by the human rights commission,  I look forward to sharing their comments with you.  In the meantime I'd like to share a few pictures of the beauty that surrounds us.

Take this little creature for instance now you may not like moths yet you have to admit this one is pretty special certainly stopped me in my tracks long enough to snap a few pics.

 
Of course this one is timeless and while it's still a long way from making an appearance I can't wait to get out there trying to capture that one unique moment.

 
How about this one taken a few weeks ago in Confederation Park in downtown Ottawa. If I would've been faster I could have captured her with all of her little ones and there must have been half a dozen or so.

Now if I could only get rid of this tiredness that has been plaguing me for the past several days I'll feel much better, looking at pictures such as this does lift my spirits so it's a start.
Have a great week.

Pumping Iron LOL

This weekend we went to our local Canadian tire, I had decided to pick up a couple of weights to do a bit of exercise. The ultimate goal? Reclaiming some lost muscle mass in my arms and also entering my name for the Rick Hansen marathon!

I figured this way I could get my arms in shape, strong enough to at least propel myself for the required distance which I believe to be 250 m.
They had quite a variety to choose from.   Of course the first one I picked was a 5 pound weight which was way beyond my current ability so I ended up settling on two weights weighing 3 pounds each.

Over the weekend I was practicing and couldn't believe how heavy 3 pounds could be.   Even from the start the very beginning I found the weights heavy yet I forced myself to at least pick them up and lift each weight from my knees to my chest lowering them slowly before doing it again.

I set my target at 20 and believe me 20 was possibly a bit much to begin with.   It's a great feeling to be able to exercise and move when you've been confined to a wheelchair an electric one for so long.  y I was proud of myself at least until today. I'm not certain if it's because I over did it or what it was yet I could not get up from my throne on the toilet!   My arms did not have the required strength to lift me to a standing position in order for me to transfer so what I ended up doing was bringing the chair close to the toilet to try and do a lateral transfer. Well that did not go very well! Finally I had to give in and call one of my friends to come and give me some assistance.

If you start some type of weight training program be smart and get advice from an expert before you begin it may help you save some time trying to learn how to do things right from the start instead of learning the hard way.

RDSP an update.

Most of you are aware that the Canadian government started a program in 2007 allowing persons to apply for Bonds/Grants for retirement savings. I mention the bond and grant portion of the program
as they represent the best options ,there is a third component to the plan however it is basically a tax-free savings account nothing really special about that .

In order to participate in the program known as (RDSP) for Registered Disability Savings Plan one has to qualify for the disability tax credit and be 49 years of age or younger to participate.

The amount you receive is based on your family income, in any event you can receive all the information by visiting the Canada revenue site or entering registered disability savings plan in your Google search.

Since multiple sclerosis is one of the most common neurological diseases affecting young Canadians today I did not understand why 49 years of age would be the cutoff point for anyone to participate.
It really didn't make sense especially when you consider the average age for diagnosis is 37 years old and it takes 10 to 15 years for most people to require an assistive device which means by the time they qualify for the disability tax credit they are already too old to participate in this program.

After several e-mails actually quite a few e-mails to several ministers I was finally able to post the results of my findings along with my complaint to the Canadian Human Rights Commission for their review. If it is deemed acceptable their lawyers will present the case to the federal government responsible for the administration of this program . They will let me know how they can assist in removing this barrier or why they cannot which in my opinion is currently discriminatory.   As far as I'm concerned any limits regarding age should reflect our accepted retirement age which is 65 certainly not 49.

I'm not certain how long it will take for me to receive a reply yet be assured that once I do I will be spreading the word to everyone who can potentially benefit from this program.

I will also take this opportunity to thank my brother Roger for his help in preparing my final document, your input was much appreciated.

I can't drive what?

What follows provided me with quite a laugh I trust it will at least provide you with a chuckle as this week comes to an end. 

As most of you know I am wheelchair bound and have been for the past seven years or so, using a walker is impossible I can stand then transfer by pivoting and that's about it.

Some time ago I received forms from the licensing bureau requesting medical information from my family physician my optometrist etc. at first I wasn't certain what to do.

On one hand it would be great if I could maintain my licensing privileges yet on the other side of the coin it really isn't that important to me,  We are centrally located and I can virtually go anywhere with my electric wheelchair.

Turns out everything came back indicating there was no reason why I could not maintain my driving privileges so I did not hesitate and sent the papers off to the SAAQ, that is the governing body in the province of Québec which handles all licensing registration anything to do with driving vehicles.

Yesterday afternoon I received a call from a gentleman at the SAAQ wishing to inform me the classification of my permit had changed, class 6.3 had been removed.  My question to him of course was "what is class 6.3" to which he answered and this is no kidding.

You are no longer permitted to drive scooters! I asked again for confirmation hung up and then cracked up!

Have a super weekend!