Sometimes the most bizarre thoughts will pop into my head. Which is probably no surprise to anyone. I realize that most people have weird ideas from time to time; they can't be original thoughts, either. Very few of those left in the world, I suspect.
I once heard or read that the human heart has the capacity for only so many beats. In an average 80 year lifespan it will beat about 3 billion times. Does that mean if you exercise a lot and increase your rate of heartbeats, you'll die sooner? Exercise strengthens the heart, so your resting heartrate will be lower, so the number of heartbeats will even out in the end (I think that's how it would work).
When you live with a diagnosis of MS and one of your symptoms is fatigue, you learn to pace yourself in your day to day activities. Come to think of it, sometimes week to week or month to month. You don't do laundry on the same day that you shop for groceries, for example.
So after Sunday's 21 k bike ride, I was thinking, "What if I have a finite number of long bike rides in me?" Say, 100. Do I get more and more fatigued with each ride until I've reached the finite number and can't ride any more?
Like I said at the beginning, bizarre thought. However, after mulling it over, I think I've rationalized it to this: Each ride will build my physical strength. The exercise is good for both body and brain (increased oxygenation, better circulation of nutrients). My eating habits have improved, so my nutrition is better, and my overall health is improving. And I know that if my overall health is good, my brain is better able to deal with the MS. So if I hit a wall from fatigue, taking a day or 3 or 4 off is not going to set me back. I can get back on the bike and do a couple of shorter rides, then a big one again. After all, marathon runners don't run a marathon every day for training.
I suspect a day will come when a genetic test will determine what number of heartbeats a person is predetermined to have. A full screening at birth will tell us if we are destined to live to 100 or 25. 10 years ago the average lifespan for a person with cystic fibrosis was 18 years. Today it is 35 (last year I met a CF patient who was 40). We will be able to determine and treat conditions in order to extend lifespans; actually, we already do that to a degree. If we are diagnosed with a treatable disease, we take medicines or alter our lifestyle to enable us to not be as affected by our disease. But a day will come when we find out at birth (if not prenatally).
So how many long bike rides do I have in me? Ask me when I'm 80.
Tuesday, June 22, 2010
Sunday, June 20, 2010
Porcupine Crossing
Gas stations are great places to find bugs. They have these really big lights that are on at night attracting all sort of insect. Yesterday morning I raided the local station and retrieved a polyphemus and an azalea sphinx. Just beautiful specimens - which are now napping in my freezer until tomorrow when I will preserve them for posterity (actually, for my own amusement and study). Pics in the very near future, dear reader.
Today, the Wookie and I went on a 21 k ride, half on a trail, the other half back to the car on the highway. On the trail, I nearly ran over a porcupine that hadn't looked both ways before attempting to cross. It waddled off into the trees while I stopped to get my camera. I managed a few shots of it in the tree. These adorable animals have poor eyesight and not great hearing; they don't really need those senses too much anyway, what with all the sharp pointy things sticking out of their fur. Anyway, I had to get a pic for Lisa (I think), who last year was disappointed that I hadn't posted a pic of the one crossing a street that I had stopped for.
We left the trail just short of the end as I could see the ocean down a drive that crossed the trail and wanted to be next to the water. It was about 2k on that road to the main highway, then 9 more to the car. I took a couple of pics of the beach on one side, and pics of a fresh water marsh on the other side of the road. The marsh had several pitcher plants and a few clumps of blue flag irises. I had noticed both plants along the trail as well, though not as many pitcher plants (they are a protected species).
All in all it was a good ride, lots of sweat dripping everywhere and a few drops of rain from time to time to tease us. I was wishing the skies would just open up to cool us down. Then off to mom and dad's to wish a dad a Happy Pappy Day. He was happy with the gifts, of course. "Don't be spending your money on me" is a quote to be ignored.
S.
Today, the Wookie and I went on a 21 k ride, half on a trail, the other half back to the car on the highway. On the trail, I nearly ran over a porcupine that hadn't looked both ways before attempting to cross. It waddled off into the trees while I stopped to get my camera. I managed a few shots of it in the tree. These adorable animals have poor eyesight and not great hearing; they don't really need those senses too much anyway, what with all the sharp pointy things sticking out of their fur. Anyway, I had to get a pic for Lisa (I think), who last year was disappointed that I hadn't posted a pic of the one crossing a street that I had stopped for.
We left the trail just short of the end as I could see the ocean down a drive that crossed the trail and wanted to be next to the water. It was about 2k on that road to the main highway, then 9 more to the car. I took a couple of pics of the beach on one side, and pics of a fresh water marsh on the other side of the road. The marsh had several pitcher plants and a few clumps of blue flag irises. I had noticed both plants along the trail as well, though not as many pitcher plants (they are a protected species).
All in all it was a good ride, lots of sweat dripping everywhere and a few drops of rain from time to time to tease us. I was wishing the skies would just open up to cool us down. Then off to mom and dad's to wish a dad a Happy Pappy Day. He was happy with the gifts, of course. "Don't be spending your money on me" is a quote to be ignored.
S.
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.
S.
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.
S.
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