383 people were recruited for the Avonex CHAMPS study in the late 90s, randomized into placebo-taking or drug-taking groups. After two years, results showed a benefit to people on the drug versus those on placebo, so everyone in the study was put on the drug. At 5 years numbers showed a benefit for long term drug use. This was the CHAMPS study.
A study was then constructed to look at even longer term results. This was deemed the CHAMPIONS study. Results were released last week in Seattle. First glance suggests good things about getting on a disease modifying therapy early and sticking with it. I say first glance because the number of participants was low. In the initial study there were 383 participants. In the second, 155. How did they lose over half the initial study's participants? Are 383 and 155 enough participants?
They lost participants partly due to compliance issues. I know one woman personally who couldn't tolerate the side effects of the drug so went off it. Some folks just couldn't handle the needle every week. I've heard of others who had adverse effects, so had to go off it. Whatever the reason they stopped Avonex, they were out of the second part of the study, and probably some dropped out of the first. I wonder if the company followed them anyway. It would be interesting to find out what, if any, changes there are in their health. As to the question of the number of participants, I don't know the answer.
I was on placebo in the CHAMPS study. For 18 months I injected myself with water, not knowing if it was water or Avonex (though secretly I thought it was placebo). I had a relapse and was determined to be clinically diagnosed MS at that point (before I had only the clinically isolated syndrome). After a year on Avonex I called their help line at 3 in the morning in tears wondering if the side effects would ever wear off. I took my shot in the evening along with two extra strength tylenol and would go to bed. And wake up four hours later in agony. The person on the other end of the phone assured me the side effects would lessen with time. The next time I saw my family doc, I told her about the side effects waking me up in pain. She gave me a new product, 8 hour arthritis tylenol. Hallelujah! So I used the samples she gave me, slept through the nights I took my shot and was able to get up in the morning and take more regular tylenol before the side effects arose again, thus keeping them at bay. I understand completely why some people opted out of the study. Again, I'm one of the lucky ones who was able to tolerate the side effects.
I have also been a part of the CHAMPIONS study. I'm one in 155. Almost 10 years after starting Avonex, I have a pretty good routine and the side effects have lessened considerably. I have almost no side effect hangover the day after my shot and I have had only one relapse since beginning the medication. So it appears to be working for me.
There are criticisms of both studies for valid reasons. The first study was to determine if Avonex was effective in delaying the onset of CDMS after one CIS event. After showing that it did, a second study was constructed to follow those on Avonex and see if relapse rates were significantly reduced. One of the problems is that the researchers could cherry pick the participants - though in reality they were just following a group of people who had already showed a positive result (as a group) to the drug. I am going to be asking these questions at the MS Clinic in days to come to see what I can find out. I still believe that early treatment is the best option we have right now.
The main idea of this post is to encourage those that can, to get on a treatment early. People are being diagnosed earlier in the course of their illness, so they qualify for these drugs. Until recently many people had to wait years before getting a diagnosis and because of the delay in beginning treatment, may have suffered irreversable damage and/or disability. These drugs are not the be all and end all. They are a way for us at this point in time to delay the onset and progression of this disease. They are a stepping stone to a better treatment or *gasp* a cure.
S.
Wednesday, May 6, 2009
Sunday, May 3, 2009
How To Get More Money
I went to a lecture last week about who pays for neuroscience research. The guy giving the lecture is currently a professor at a university in Arizona. He packed about 3 hours worth of information into one hour plus a question and answer period after wards. My head was reeling after the lecture, but I came away with a better understanding of how much money there is in scientific research in general and who pays for it. While there is a great deal of public money that goes into research, there is also a lot of privately funded research. By private, I am referring to any organization that doesn't receive any, or a very small percentage of, money from government sources. My question was how do we convince the non-scientific community, the general public, that money is needed and well used?
The main thing that I got from the lecture was that everything all comes down to communication. I thought a lot about this concept over the past couple of days and have realized that most of life come down to communication.
Animals communicate with one another on very basic levels, through sounds, odors, taste, visual displays, and touch. Humans have an even greater tool they also use: speech. It is a most effective tool when well thought out and researched and then combined with those other senses. When I speak to a group of people about my experiences with MS, I have often used props to explain the disease, like a cable with the insulation cut away, or I have everyone undo their shoelaces, sit on one hand and have them try to retie the laces one handed. I combine speech with a visual display, and it's highly effective.
As MSers, we want more money to be spent on funding research that leads ultimately to a cure. We spend countless hours holding fundraisers for our cause and for the most part it's peanuts, compared to the government or philanthropical (like Paul Allen or Bill and Melinda Gates) coffers out there. So how do we get more money from those sources? By more effective communication.
Everyone knows that the key to finding answers to scientific questions is through scientific research. There are so many causes out there, it's not enough to simply state to a government rep that people are sick and we need a cure. They know that already. We need to explain and show what the benefit of funding research is. We need more people speaking out to whoever will listen. We need researchers to speak out as well, explaining where we are and how much farther we need to go. We need the media to educate themselves so as to better educate their audience.
We need to consolidate our research as well. Communication between agencies and between researchers must be encouraged. By sharing everything we have learned so far, we might just figure this out.
S.
The main thing that I got from the lecture was that everything all comes down to communication. I thought a lot about this concept over the past couple of days and have realized that most of life come down to communication.
Animals communicate with one another on very basic levels, through sounds, odors, taste, visual displays, and touch. Humans have an even greater tool they also use: speech. It is a most effective tool when well thought out and researched and then combined with those other senses. When I speak to a group of people about my experiences with MS, I have often used props to explain the disease, like a cable with the insulation cut away, or I have everyone undo their shoelaces, sit on one hand and have them try to retie the laces one handed. I combine speech with a visual display, and it's highly effective.
As MSers, we want more money to be spent on funding research that leads ultimately to a cure. We spend countless hours holding fundraisers for our cause and for the most part it's peanuts, compared to the government or philanthropical (like Paul Allen or Bill and Melinda Gates) coffers out there. So how do we get more money from those sources? By more effective communication.
Everyone knows that the key to finding answers to scientific questions is through scientific research. There are so many causes out there, it's not enough to simply state to a government rep that people are sick and we need a cure. They know that already. We need to explain and show what the benefit of funding research is. We need more people speaking out to whoever will listen. We need researchers to speak out as well, explaining where we are and how much farther we need to go. We need the media to educate themselves so as to better educate their audience.
We need to consolidate our research as well. Communication between agencies and between researchers must be encouraged. By sharing everything we have learned so far, we might just figure this out.
S.
Saturday, May 2, 2009
Bugs, Birds, and Brains
As always, click on the picture to get a better look.
This little thing is probably a cicada pupa, though I'm afraid it's long left this world, just the shell appears to be what remains. It doesn't have a protective covering and it was just laying in the middle of a dirt road. It may have been (accidentally) dug up from the ground over the winter or even last fall. Still, it was cool to look at.
The next two shots are the ones taken by the Wookie of one of the osprey nests. The first one shows one of the birds landing with more material to shore up the home.
I suspect in this picture, the two birds are discussing the whole Chrysler situation:
I haven't been out all week for any exercise as my back muscles needed to heal. I'm going to attempt to help clean out the fish ladder today and if all goes well, we'll be hiking tomorrow. I got directions to a different hiking trail close to where the Wookie lives so we'll be checking that out.
Earlier this week I attended a lecture about who pays for neuroscience research. The guy who gave the lecture crammed in so much information into that hour my head was spinning and it gave me so much to think about I've had trouble writing it down. But an analysis is coming...
S.
This little thing is probably a cicada pupa, though I'm afraid it's long left this world, just the shell appears to be what remains. It doesn't have a protective covering and it was just laying in the middle of a dirt road. It may have been (accidentally) dug up from the ground over the winter or even last fall. Still, it was cool to look at.
The next two shots are the ones taken by the Wookie of one of the osprey nests. The first one shows one of the birds landing with more material to shore up the home.
I suspect in this picture, the two birds are discussing the whole Chrysler situation:
I haven't been out all week for any exercise as my back muscles needed to heal. I'm going to attempt to help clean out the fish ladder today and if all goes well, we'll be hiking tomorrow. I got directions to a different hiking trail close to where the Wookie lives so we'll be checking that out.
Earlier this week I attended a lecture about who pays for neuroscience research. The guy who gave the lecture crammed in so much information into that hour my head was spinning and it gave me so much to think about I've had trouble writing it down. But an analysis is coming...
S.
Monday, April 27, 2009
Birds, Botany, and My Butt
As usual, click on the pictures for a better look.
The latest hike (yesterday) was about 7k through woods to the power line that runs between Sandy Lake and Marsh Lake. When I was there a week and a half ago there was no sign of nesting osprey. This time we saw two nesting pairs. The birds are still putting the final touches on their summer homes and will lay eggs in the next two weeks. The osprey cam that I featured last summer should be up and running again soon and I'll post the link to it when that happens. The Wookie got better shots than I did but hasn't posted them yet. So mine will have to do.
Along the power line were these transitioning pussy willows:
Following the power line we arrived at the stream (though now a river) that empties Sandy Lake into Marsh Lake. Following the stream into the woods towards Sandy Lake was an option we hadn't enjoyed before so we tramped through the wet trail that was there. On the way we came across a mouse condo:
I saw tons of ferns sprouting from the wet ground. Almost time for fiddleheads! Boiled with butter and salt or a little bit of vinegar....yum:
We managed to traipse around the eastern side of Sandy Lake and got right back to our starting point with no problems. Now I need to get to the western side. I also found an insect pupa. No idea what it is or what it's going to be so a little research first and pics and identification will follow. The fish ladder cleaning was cancelled because of high water and it's been rescheduled for next weekend.
We also attended a skating party yesterday afternoon. I foolishly borrowed someone's skates, got 5 feet on the ice and promptly smashed onto it, butt first. I ended up straining some butt muscles so am walking a little slowly today and it will delay my biking by a few days, but I'll be riding soon enough. I also have to write a note of apology to the rink maintenance people for cracking their ice......
S.
The latest hike (yesterday) was about 7k through woods to the power line that runs between Sandy Lake and Marsh Lake. When I was there a week and a half ago there was no sign of nesting osprey. This time we saw two nesting pairs. The birds are still putting the final touches on their summer homes and will lay eggs in the next two weeks. The osprey cam that I featured last summer should be up and running again soon and I'll post the link to it when that happens. The Wookie got better shots than I did but hasn't posted them yet. So mine will have to do.
Along the power line were these transitioning pussy willows:
Following the power line we arrived at the stream (though now a river) that empties Sandy Lake into Marsh Lake. Following the stream into the woods towards Sandy Lake was an option we hadn't enjoyed before so we tramped through the wet trail that was there. On the way we came across a mouse condo:
I saw tons of ferns sprouting from the wet ground. Almost time for fiddleheads! Boiled with butter and salt or a little bit of vinegar....yum:
We managed to traipse around the eastern side of Sandy Lake and got right back to our starting point with no problems. Now I need to get to the western side. I also found an insect pupa. No idea what it is or what it's going to be so a little research first and pics and identification will follow. The fish ladder cleaning was cancelled because of high water and it's been rescheduled for next weekend.
We also attended a skating party yesterday afternoon. I foolishly borrowed someone's skates, got 5 feet on the ice and promptly smashed onto it, butt first. I ended up straining some butt muscles so am walking a little slowly today and it will delay my biking by a few days, but I'll be riding soon enough. I also have to write a note of apology to the rink maintenance people for cracking their ice......
S.
Saturday, April 25, 2009
Frog Eggs.....and Deer Poop
Today the Wookie and I went for a few short jaunts. Neither of us had the energy for one big hike. The first pic is of one of the neighbourhood "gate hinges" as I like to call hem. Blue Jays are one of the noisiest of birds and sound like gate hinges to me. My father says they sound like a laundry line pulley.
We came across a couple pf wet spots in the woods and upon closer examination discovered clutches of frogs' eggs.
In the same wet spot another species of frogs' eggs. I think there are 4 or 5 different species of frog in Nova scotia and they all live fairly well together; bullfrogs, leopard spotted, green frogs, peepers, they all share the land and water.
The flying insects were out in great numbers today; I came across a few different beetles, flies, and bees. And the spiders were scurrying like mad. Except for this one. I suspect it's a species of crab spider; small but brave it will put up it's first two pairs of legs in a defensive motion (or maybe it's offensive). And what would a hike in the woods be without the obligatory shot of deer poop for Braincheese?
Tomorrow we'll be helping to clean out the fish ladder at Heffler's Mill on the Sackville River. I hope to return with a few more caddisflies to put in the aquarium. And pictures!
S.
We came across a couple pf wet spots in the woods and upon closer examination discovered clutches of frogs' eggs.
In the same wet spot another species of frogs' eggs. I think there are 4 or 5 different species of frog in Nova scotia and they all live fairly well together; bullfrogs, leopard spotted, green frogs, peepers, they all share the land and water.
The flying insects were out in great numbers today; I came across a few different beetles, flies, and bees. And the spiders were scurrying like mad. Except for this one. I suspect it's a species of crab spider; small but brave it will put up it's first two pairs of legs in a defensive motion (or maybe it's offensive). And what would a hike in the woods be without the obligatory shot of deer poop for Braincheese?
Tomorrow we'll be helping to clean out the fish ladder at Heffler's Mill on the Sackville River. I hope to return with a few more caddisflies to put in the aquarium. And pictures!
S.
PD and MS
Sergey Brin is the brains behind Google. But he's got a "bug" in his brain. From Wikipedia:
In May 2007, Brin married Anne Wojcicki in The Bahamas. Wojcicki is a biotech analyst and a 1996 graduate of Yale University with a B.S. in biology. [4][16] She has an active interest in health information, and together she and Brin are developing new ways to improve access to it. As part of their efforts, they have brainstormed with leading researchers about the human genome project. “Brin instinctively regards genetics as a database and computing problem. So does his wife, who co-founded the firm, 23andMe,” which lets people analyze and compare their own genetic makeup (consisting of 23 pairs of chromosomes).[6] In a recent announcement at Google’s Zeitgeist conference, he said he hoped that some day everyone would learn their genetic code in order to help doctors, patients, and researchers analyze the data and try to repair bugs.[6]
Brin's mother, Eugenia, has been diagnosed with Parkinson's Disease. In 2008, he decided to donate a large sum to the University of Maryland School of Medicine, where his mother is being treated.[17] Brin used the services of 23AndMe and discovered that although Parkinson's is generally not hereditary, both he and his mother possess a mutation of the LRRK2 gene that puts the likelihood of his developing Parkinson's in later years between 20 and 80%.[6] When asked whether ignorance was not bliss in such matters, he stated that his knowledge means that he can now take measures to ward off the disease. An editorial in The Economist magazine states that "Mr Brin regards his mutation of LRRK2 as a bug in his personal code, and thus as no different from the bugs in computer code that Google’s engineers fix every day. By helping himself, he can therefore help others as well. He considers himself lucky. ... But Mr Brin was making a much bigger point. Isn’t knowledge always good, and certainly always better than ignorance?"
There is a bit of controversy with genetic testing and licencing to companies that offer it. The industry of "educational genetic testing" is still in its infancy. Many companies offer to test your DNA to determine your ethnic ancestry, which parts of the world your ancestors came from. But there is also a growing number of labs that will check your DNA for certain diseases or "markers".
Brin is in the process of getting people signed up with 23AndMe who have Parkinson's Disease or who may have a genetic connection to it. He is offering reduced rates for testing in order to build a database to be used for further study. At a glance, this appears a cool idea. But it is peppered with criticism about scientific validity. Whatever happens with his study I'll be watching. My interest in the project and perhaps others like it is my connection with Parkinson's and Multiple Sclerosis.
I'm not worried that I will develop PD on top of my MS. What concerns me is that if I do develop PD, symptoms may be confused with MS symptoms and treatment for the two diseases is different. I contacted a friend's wife who is a genetic counselor at a local hospital. She passed on some info to me that explains "familial PD" and the process of differentiating the many types of PD. My odds of developing PD are only slightly more that the general population, which is what I thought. Unless I have my DNA analyzed, I won't know for sure. Familial PD occurs less frequently than other PD, and of the two aunts I had who did have PD, one developed early onset PD, the other, late onset PD. The uncle and grandfather who had (undiagnosed but evident) essential tremor developed it late in life.
So what do I take from all this info? There appears to be a propensity for movement disorder on my paternal side of the family. MS is not a movement disorder, though movement is definitely affected. Right now it is classed as an auto-immune disorder. But both PD and MS are diseases of the brain. Where does MS fit in? That's what I'm waiting to find out.
S.
In May 2007, Brin married Anne Wojcicki in The Bahamas. Wojcicki is a biotech analyst and a 1996 graduate of Yale University with a B.S. in biology. [4][16] She has an active interest in health information, and together she and Brin are developing new ways to improve access to it. As part of their efforts, they have brainstormed with leading researchers about the human genome project. “Brin instinctively regards genetics as a database and computing problem. So does his wife, who co-founded the firm, 23andMe,” which lets people analyze and compare their own genetic makeup (consisting of 23 pairs of chromosomes).[6] In a recent announcement at Google’s Zeitgeist conference, he said he hoped that some day everyone would learn their genetic code in order to help doctors, patients, and researchers analyze the data and try to repair bugs.[6]
Brin's mother, Eugenia, has been diagnosed with Parkinson's Disease. In 2008, he decided to donate a large sum to the University of Maryland School of Medicine, where his mother is being treated.[17] Brin used the services of 23AndMe and discovered that although Parkinson's is generally not hereditary, both he and his mother possess a mutation of the LRRK2 gene that puts the likelihood of his developing Parkinson's in later years between 20 and 80%.[6] When asked whether ignorance was not bliss in such matters, he stated that his knowledge means that he can now take measures to ward off the disease. An editorial in The Economist magazine states that "Mr Brin regards his mutation of LRRK2 as a bug in his personal code, and thus as no different from the bugs in computer code that Google’s engineers fix every day. By helping himself, he can therefore help others as well. He considers himself lucky. ... But Mr Brin was making a much bigger point. Isn’t knowledge always good, and certainly always better than ignorance?"
There is a bit of controversy with genetic testing and licencing to companies that offer it. The industry of "educational genetic testing" is still in its infancy. Many companies offer to test your DNA to determine your ethnic ancestry, which parts of the world your ancestors came from. But there is also a growing number of labs that will check your DNA for certain diseases or "markers".
Brin is in the process of getting people signed up with 23AndMe who have Parkinson's Disease or who may have a genetic connection to it. He is offering reduced rates for testing in order to build a database to be used for further study. At a glance, this appears a cool idea. But it is peppered with criticism about scientific validity. Whatever happens with his study I'll be watching. My interest in the project and perhaps others like it is my connection with Parkinson's and Multiple Sclerosis.
I'm not worried that I will develop PD on top of my MS. What concerns me is that if I do develop PD, symptoms may be confused with MS symptoms and treatment for the two diseases is different. I contacted a friend's wife who is a genetic counselor at a local hospital. She passed on some info to me that explains "familial PD" and the process of differentiating the many types of PD. My odds of developing PD are only slightly more that the general population, which is what I thought. Unless I have my DNA analyzed, I won't know for sure. Familial PD occurs less frequently than other PD, and of the two aunts I had who did have PD, one developed early onset PD, the other, late onset PD. The uncle and grandfather who had (undiagnosed but evident) essential tremor developed it late in life.
So what do I take from all this info? There appears to be a propensity for movement disorder on my paternal side of the family. MS is not a movement disorder, though movement is definitely affected. Right now it is classed as an auto-immune disorder. But both PD and MS are diseases of the brain. Where does MS fit in? That's what I'm waiting to find out.
S.
Monday, April 20, 2009
More Hikes
The past week has been rather on the busy side, with work commitments, dinner with friends, and then getting the Wookie at the airport.
Last Wednesday I took a trek to Jack's Lake from the western side. It's completely cleared of ice as this picture can attest. If you look to the opposite side of the water you can see the little beach I normally come to for pics.
Saturday morning I was part of a spring clean up in and around a small part of the Little Sackville River. It didn't take us long to gather 25 bags of garbage plus bigger stuff that won't fit in a garbage bag. I had a young partner, Jennifer, who, though quiet, was excited to be part of the clean up. And as an added bonus we came across another cocoon in a pussy willow tree. It was almost hidden by leaves and grass but I gently pried off a bit of the leaves to reveal the cocoon to Jennifer. I later sent her pics of our discovery and pics of the moth that I believe will emerge.
On a trek today I found a skull in a tree. OK, not a real skull:
On our hike yesterday, the Wookie and I tried to get pictures of a couple of woodpeckers but they were uncooperative. I did spy the cutest little racoon pawprint, though:
But I think the greatest discovery was of the rare, endangered, and dangerous Kung Fu Panda Bear:
S.
PS:
The bike will be coming out of hibernation very soon. I'm hoping that all the hiking is building muscle in my legs in preparation for the long bike rides I'm planning for the spring and summer. And I'm currently researching Parkinson's Disease. It is a very different animal from MS, but it does run in my family. I hope to have something on that in the near future.
Last Wednesday I took a trek to Jack's Lake from the western side. It's completely cleared of ice as this picture can attest. If you look to the opposite side of the water you can see the little beach I normally come to for pics.
Saturday morning I was part of a spring clean up in and around a small part of the Little Sackville River. It didn't take us long to gather 25 bags of garbage plus bigger stuff that won't fit in a garbage bag. I had a young partner, Jennifer, who, though quiet, was excited to be part of the clean up. And as an added bonus we came across another cocoon in a pussy willow tree. It was almost hidden by leaves and grass but I gently pried off a bit of the leaves to reveal the cocoon to Jennifer. I later sent her pics of our discovery and pics of the moth that I believe will emerge.
On a trek today I found a skull in a tree. OK, not a real skull:
On our hike yesterday, the Wookie and I tried to get pictures of a couple of woodpeckers but they were uncooperative. I did spy the cutest little racoon pawprint, though:
But I think the greatest discovery was of the rare, endangered, and dangerous Kung Fu Panda Bear:
S.
PS:
The bike will be coming out of hibernation very soon. I'm hoping that all the hiking is building muscle in my legs in preparation for the long bike rides I'm planning for the spring and summer. And I'm currently researching Parkinson's Disease. It is a very different animal from MS, but it does run in my family. I hope to have something on that in the near future.
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