Last night I watched Michelle Obama address the National Democratic Committee Convention in Denver. I remembered that Barack Obama was affected by multiple sclerosis and I was reminded that Michelle's dad had ms and died from complications. My great-aunt died from ms complications too. So did my childhood neighbor recently -- she was a mom and I think a year younger than my brother, so only 40 years old. It made me uncomfortably squirm when Michelle said her dad died from complications from ms. Michelle Obama spoke eliquently, amazingly. I admire the Obamas.
Can you believe that our government doesn't even keep track of where all of us living with ms were born, where we lived when we were diagnosed? We don't even know for certain how many people live with ms in the United States (there is anecdotal thoughts that the rate is increasing. why?). You'd think our government would be interested in this information to help find a cure.
Yes, everything is political. Most people don't really think about how politics affects almost everything in their lives. When I drove home from work today, I was able to do so because some people got together to pass laws affecting the roads I traveled -- first a law that there could be a road, the road was variously 2 lanes to 5 lanes because of politics, street lights made me stop at least a half dozen times because of politics, politics dictated how fast I drove. And now in some states, politics affects whether I can update this blog while I drive (probably not a good idea and should not be legal). The mileage my car got during the drive was even affected by politics.
Do you ever hear someone say, "Politics don't affect me"? Silly, huh?
I hope that I never miss more elections than I do Green Bay Packer games (never!).
Tomorrow night I am going to walk what will be a couple miles distributing candidate information (a registered nurse, candidate) door to door. Politics affects me so much that I want to make sure that there are good people on the ballot when I go to vote.
For as long as I'm walking, I'm affecting politics; as long as there's politics, politics affects my walking.
Tuesday, August 26, 2008
Thursday, August 21, 2008
Steady
Went to ride the bike at the Y after work tonight. The ride went better today than during Tuesday. The bike said that I peddled 6.02 miles in twenty two minutes, the bike to 11. My pulse was 150 bps mostly. When I finished, I completed a relaxed cool-down. Then I walked, one step after another step, heel to toe without any assistance maintaining my own balance, to the sanitation stuff. I cleaned my own bike. I walked down all the stairs without assistance. I opened my car door, entered and sat in the seat without help and I drove the car.
On Tuesday, I peddled 7.03 miles during 22 minutes. My pulse was pushing 195 bps. Afterward, I needed help moving from the bike to a bench where I sat for about 10 minutes (while Abbey cleaned up after me (I'm lucky)). My head was spinning. I felt a little dizzy. It was unsettling and a little scary. Abbey helped by down the stairs and out the door, into the car and drove us home. We were not home more than a minute and I was in the shower. I felt a lot better after the shower. I agreed that I shouldn't push myself like that again.
When I peddled today, I listened to the Clouds Taste Metallic. It reminded me of 1998. I was thinking about fear, 1998 and the push for the Employee Free Choice Act in Congress today. For so many reasons, not the least including restoring and affirming the human right to bargain collectively again, it is very important that the next Congress passes and the President signs the Employee Free Choice Act into law.
On Tuesday, I peddled 7.03 miles during 22 minutes. My pulse was pushing 195 bps. Afterward, I needed help moving from the bike to a bench where I sat for about 10 minutes (while Abbey cleaned up after me (I'm lucky)). My head was spinning. I felt a little dizzy. It was unsettling and a little scary. Abbey helped by down the stairs and out the door, into the car and drove us home. We were not home more than a minute and I was in the shower. I felt a lot better after the shower. I agreed that I shouldn't push myself like that again.
When I peddled today, I listened to the Clouds Taste Metallic. It reminded me of 1998. I was thinking about fear, 1998 and the push for the Employee Free Choice Act in Congress today. For so many reasons, not the least including restoring and affirming the human right to bargain collectively again, it is very important that the next Congress passes and the President signs the Employee Free Choice Act into law.
Tuesday, August 5, 2008
We did it!
After 7 hours of peddling on Sunday, we rolled into Madison, completing the 125 mile ride; as of this second, we've raised just under $2000 to end multiple sclerosis. I'm thrilled. [NOTE: we ultimately exceeded our goal of raising $2,000!!!! Thank you givers!]
Someday, Abbey and I will do the ride again -- this time with more people -- we've already recruited others to ride with us!
Money raised on the ride and through other fundraising efforts are pooled and distributed to fund research to find a cure -- millions of dollars in grants have been distributed to Wisconsin researchers and others around the world.
We learned on this year's ride that the National Multiple Sclerosis Society has funded $550 million in research since 1947. Sounds like a lot of money, but that's nothing -- today I noticed WI's largest hospital had revenues of $600 million in 2000 alone. If we are spending $200 billion in Iraq each year, that's about $548 million per day.
Speaking of international relations and ms (bike rides against ms). While driving our bikes through the Wisconsin countryside, I observed:
* Too many to count moms, dads and their kids standing beside the road, on the curb, in the driveway, on the porch sharing smiles and words of encouragement;
* 3 large signs urging that the troops be brought home (including a really large one on the east bank of the Rock River);
* 2 Impromto beverage/water stands, unassociated with the NMSS support teams, setup up be generous amazing WI farmers;
* 2 French flags flying on rural WI porches.
The french flags made me smile and I felt a little saddened as I thought about the number of USA flags Abbey and I saw flying in all of Berlin, Prague and Vienna during May -- none! And then there would be another smiling face encouraging us.
While I felt like I fell down a flight of stairs yesterday, today I felt great. Continuing to drink large quanities of water made all the difference.
Someday, Abbey and I will do the ride again -- this time with more people -- we've already recruited others to ride with us!
Money raised on the ride and through other fundraising efforts are pooled and distributed to fund research to find a cure -- millions of dollars in grants have been distributed to Wisconsin researchers and others around the world.
We learned on this year's ride that the National Multiple Sclerosis Society has funded $550 million in research since 1947. Sounds like a lot of money, but that's nothing -- today I noticed WI's largest hospital had revenues of $600 million in 2000 alone. If we are spending $200 billion in Iraq each year, that's about $548 million per day.
Speaking of international relations and ms (bike rides against ms). While driving our bikes through the Wisconsin countryside, I observed:
* Too many to count moms, dads and their kids standing beside the road, on the curb, in the driveway, on the porch sharing smiles and words of encouragement;
* 3 large signs urging that the troops be brought home (including a really large one on the east bank of the Rock River);
* 2 Impromto beverage/water stands, unassociated with the NMSS support teams, setup up be generous amazing WI farmers;
* 2 French flags flying on rural WI porches.
The french flags made me smile and I felt a little saddened as I thought about the number of USA flags Abbey and I saw flying in all of Berlin, Prague and Vienna during May -- none! And then there would be another smiling face encouraging us.
While I felt like I fell down a flight of stairs yesterday, today I felt great. Continuing to drink large quanities of water made all the difference.
Tuesday, July 29, 2008
Heat
The weather forecaster says it's gonna be hot this weekend in Wisconsin, hottest days of the year.
What does heat mean for someone living with ms you ask? Lets put it this way, doctors used to use a hot water tub to assist diagnosis, before MRIs, before spinal taps. Doctors noticed that a person living with ms, may experience symptoms like numbness or renewed numbness, weakness or faint feeling, vision issues, even dizzyness in hot water -- the coroner noticed these people were also the ones whose spinal chords had the plaques (immune system induced scars/damage). Yeah. During 2002, I tried to run in the spring and as the spring turned to summer, I stopped running because as my mileage increased, I'd gotten to about a mile and a half, I just felt really unsafe from symptoms that emerged as my body temperature increased.
In the weirdness that ms is and fortunate for me and as my doctor said a few years ago, "[you] seemed to be getting healthier". I haven't been experience the heat issues like I used to. That's not to say I haven't, just not as pronounced.
The miles on the bike in the sun on the hottest days of the year sorta thrust a gut check -- makes me want to pledge twice as much cash for my ride as I thought I'd do at http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830.
What does heat mean for someone living with ms you ask? Lets put it this way, doctors used to use a hot water tub to assist diagnosis, before MRIs, before spinal taps. Doctors noticed that a person living with ms, may experience symptoms like numbness or renewed numbness, weakness or faint feeling, vision issues, even dizzyness in hot water -- the coroner noticed these people were also the ones whose spinal chords had the plaques (immune system induced scars/damage). Yeah. During 2002, I tried to run in the spring and as the spring turned to summer, I stopped running because as my mileage increased, I'd gotten to about a mile and a half, I just felt really unsafe from symptoms that emerged as my body temperature increased.
In the weirdness that ms is and fortunate for me and as my doctor said a few years ago, "[you] seemed to be getting healthier". I haven't been experience the heat issues like I used to. That's not to say I haven't, just not as pronounced.
The miles on the bike in the sun on the hottest days of the year sorta thrust a gut check -- makes me want to pledge twice as much cash for my ride as I thought I'd do at http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830.
Monday, July 28, 2008
Lee Rayburn show, 92.1 FM The Mic
I've never appeared on a radio show. Before listening to 92.1 in Madison, I found little use for commercial radio, mostly just listened to cds from referals and live shows, occasionally national public radio for news.
Today, I appeared on the Lee Rayburn radio show at 6:45a. I appear at the last 15 minute portion of the hour. Lee is a good radio host and it was really great that he invited me to join him on air. I'm alway eager to talk about how my InterferonB drugs now cost $2,240, even though they were only $980 per month 6.5 years ago -- worse the patent is expired, but the FDA can't license a generic version because congress and the President haven't empowered the FDA to do so; there is a generic verson in Europe (I hope this angers you as much me, probably equal to how angry you feel every time your health insurance costs incease, your out-of-pocket insurance costs increase).
And I was really happy to announce that people can support research for a cure and programs assisting us, me, all of us living with ms and the people who worry about us by supporting me on the Best Dam Bike Ride this weekend, August 2nd and 3rd, Pewaukee to Whitewater to Madison. (You can give at: http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830)
Today, I appeared on the Lee Rayburn radio show at 6:45a. I appear at the last 15 minute portion of the hour. Lee is a good radio host and it was really great that he invited me to join him on air. I'm alway eager to talk about how my InterferonB drugs now cost $2,240, even though they were only $980 per month 6.5 years ago -- worse the patent is expired, but the FDA can't license a generic version because congress and the President haven't empowered the FDA to do so; there is a generic verson in Europe (I hope this angers you as much me, probably equal to how angry you feel every time your health insurance costs incease, your out-of-pocket insurance costs increase).
And I was really happy to announce that people can support research for a cure and programs assisting us, me, all of us living with ms and the people who worry about us by supporting me on the Best Dam Bike Ride this weekend, August 2nd and 3rd, Pewaukee to Whitewater to Madison. (You can give at: http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830)
Tuesday, July 22, 2008
Soliciting
I think people really want to help others. It feels good to help people. I need help ending the effects of Multiple Sclerosis. None of us will end ms by ourselves. Fortunately no one has to do it alone. You can help Abbey and me make a difference ending the effects of ms as they affect me, 400,000 people living with ms across the country and make a difference in the lives of the millions of people that worry about someone living with ms.
Get that good feeling, probably equal to the degree to which I'll probably hurt on the 125 mile Best Dam Bike Ride [against MS]. Click this link: http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830, then please make a tax-deductible donation there.
Thank you.
Oh, please share my blog broadly. I want more people to hear about how a drug, probably slowing my ms, now costs $2,240 per month, up from $980 per month in 2002 and that the patent is expired, but congress hasn't authorized the Food and Drug Administration to license generic biological drugs like the one I use.
Get that good feeling, probably equal to the degree to which I'll probably hurt on the 125 mile Best Dam Bike Ride [against MS]. Click this link: http://main.nationalmssociety.org/site/TR?px=2024772&pg=personal&fr_id=7830, then please make a tax-deductible donation there.
Thank you.
Oh, please share my blog broadly. I want more people to hear about how a drug, probably slowing my ms, now costs $2,240 per month, up from $980 per month in 2002 and that the patent is expired, but congress hasn't authorized the Food and Drug Administration to license generic biological drugs like the one I use.
Training at the Y
I like the YWCA down the road from our house. I'm grateful Abbey signed us up; its a wonderful resource for our community. We've been working out at the Y for the past few months. I wish I could say that we've been on a routine, but we've been so busy. Still, I peddled 6.2 miles in 20 minutes today with a fair amount of resistance, like I was peddling up a hill. I don't think I'd have ever completed the 50+ mile ride a week ago if not for the Y -- and I can listen to headphones with out breaking the law when I'm at the Y (thank you Flaming Lips and Olivia Tremor Control). Hopefully, I go again on Thursday.
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