Thursday, June 17, 2010

I'm Here!!

I have been amazingly lax the past few weeks as far as the blog goes. You should go make yourself a cup of tea before you sit down to read the rest of this post.

I really have put the push on for getting donations for the Bike Tour since I don't have the support of a "work" network this time 'round. So that's been keeping me hopping. Though I did have one really good experience at the grocery store last week. A man in line in front of me commented on the bike tour jacket I wear and asked if I did the bike tour. Turns out he had been invited to participate with some friends but is unable to do so. I told him he could help out just the same by sponsoring me. So he found a bank machine to get some money to give me. I took down his name and address of course so he can get a tax receipt, but while waiting at the bank machine I told him I felt like I was shaking him down. He laughed, gave me 20 bucks and next year he may bike with my team instead of his friend's.

I have been in "serious" training for the tour as well. I have made a few short but heavy duty rides, lots of hills to work the legs. I am very pleased with my progress, getting up these hills with fewer stops, increasing my kilometres per hour average, and generally building strength in my legs. I have also fallen off the bike twice in the past 3 weeks, both times (as usual, actually) when I was coming to a stop. Last Sunday I'm afraid the spill I took drew a little more blood than usual, and two little boys watched intently as I administered my own first aid. The older of the two had questions for me about my "boo boo" and asked me to show him my other ones (after he showed me his). They were too cute for words and their mother pointed out the fact that I had a first aid kit with me which she informed them is always a good idea when going on a long bike ride. Come to think of it, it's a good idea for me to always have a first aid kit....I had to replenish my first aid supplies after the ride.

I took my bike in yesterday for its 1000k tune up. When the guy working at the shop saw me, I just showed him my bandaged knee and he said, "Again?". They put a new chain on the bike and tuned it up for me, as well, they have checked my pedal clips and hopefully loosened them (that's why I fall - can't get unclipped fast enough).

A couple of weeks ago, the majority of Canadian MS Walks were held. The Wookie, Margo, Marc, and I walked as a team, going 8 kilometres by foot. I had hoped to have a team picture to show you by now, but don't so you'll just have to wait. It was definitely fun and good to catch up with a number of people including the Sackville Kinsmen Club who are holding their car show again this year and asked me to set my bike up again. That's on the 27th.

About a week ago, one of the local tv stations ran a story about a local woman who is trying to raise money so she can go overseas and get the "liberation" treatment. Don't get me started. but what irked me was that she yanked her team from the MS Walk in protest of the fact that the MS Society is not lobbying the government to pay for this procedure. That angered me more than anything else I've heard recently. The MS Society of Canada along with the NMSS in the US has designated 2.4 millions dollars to study CCSVI and the link it appears to have with MS (this was announced just last week). It will not be funding surgical procedures at this point because we don't know if there is a link between the two. Depending on the outcome of these initial studies, then perhaps the "liberation" procedure itself will be studied.

The media still hasn't caught on to the fact that the theory behind CCSVI is that a build up of iron in the brain because of closed off veins is what causes MS. If there are iron deposits in the brain it would take more than half an hour to clear them from the brain, but half an hour seems to be the length of time between having the procedure performed and noticing a difference in MS symptoms.

So why do some people report miraculous results from this procedure? There are a number of factors at play including the Placebo Effect, not to mention improved circulation of blood in the brain. We all know that improving the circulation of blood in the brain is going to be good for you. My thoughts about miraculous improvements all involve improving oxygenation and toxin removal (by toxin, I mean cellular byproducts like waste). So until the folks who have had the procedure done can show measured reduction in MS symptoms over a period of time, I stand by my idea that this treatment is not an effectual one. Not for MS, anyway. It may be an effectual treatment for a vascular condition that many people without MS have. I would love to have this treatment proven to be an effective one for MS. But you must show me the scientific evidence first.

A couple of days ago, I was one of three people on a panel for a presentation to a group of health professionals about what it's like to be a research participant. It was part of a series of lunch hour sessions set up for health workers in the Capital District Health Association (which covers all of Halifax and surrounding areas). It was teleconferenced to other sites as well in 4 or 5 other hospitals. Most of the questions had to do with how we felt as "guinea pigs", why we agreed to be in a clinical study and our likes and dislikes about the experience. All three of us were quite positive about our feelings and how we were treated. Learning why we participated was important for these folks to hear as it helps them determine how to ask future participants to be in studies. It was a very cool experience for me as I had never really given any thought to other participants' reasons for being in a study, only mine; I'm curious, I need to know stuff (which they thought was funny). One panelist was given a drug in a different form that was being measured to see if it was more effective or just as effective as it's regular form. The other panelist was in a similar type study. In my case, in my first trial, this was one of the first disease modifying drugs (the other being Copaxone) for MS. Plus, I was in a Phase 3 trial which had the chance of me being on a placebo. The other studies have involved the course of my MS or looking for genetic markers, so have involved MRIs and blood work (both now a walk in the park for me).

And finally, on the bug front, it's almost SUMMERTIME!! Which means warmer evenings and lots of night time bugs. Like june bugs, face down on the pavement trying to drill their way to China. Or carrion beetles searching for meals. Or moths beating themselves against the building under the security lights - picture me below the lights after dark with my net in hand just waiting for them to get within reach. I retrieved a beautiful hawk moth last night which spent the day in my freezer. Taking a nap. In a couple of days I'll take him out, photograph him and preserve him. Pictures will be up before too long of my latest finds.

I promise not to be so lax from now on. Really.



淑娟 said...


怡婷 said...