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.

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)

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.

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.

20s and 30-somethings

Last night, the Wisconsin Chapter of the National Multiple Sclerosis Society held a social event at a bar in Madison (thanks Great Dane). This was the second event of the group. I was glad that there were other guys living with MS there. Still, women out-numbered men 3 or 4 to 1. I think this is about the ratio in the general public. I do not recommend doing something like going to Iraq to increase your chances of developing the disease as a strategy for meeting girls (Iraq veterans seem to be developing MS at an above average rate, something I worry about for my 5 cousins who served there, especially two first cousins who share with me a common great-aunt who died from complications related to MS in 1971, the year I was born.).

I think it was very smart to begin building 20s and 30-something groups. Really smart. No disrespect more seasoned individuals when I say here what someone said to me when I was first diagnosed, "you might find attending MS support groups difficult". This promotes isolation so I ultimately did get connected with a support group near me when I first returned to Madison, after living in Montana 6+ years, the last 3 with MS, 4 with symptoms and never before attending a group meeting.

I'm glad I got together with other people in my age group living with MS last night. From having attended support groups, I'm grateful for the science conducted at research universities where new drugs were developed that will help me and those at the bar last night to hopefully never see the years without the therapies too many know or knew like my great-aunt. [all those fundraising activities, like MS walks, rides... help fund the research and provide services to people living with MS, including helping to bring us together to laugh and learn together.]

50 mile peddle

Abbey and I peddled 50 miles yesterday -- Middleton, through Madison, to Verona, to Riley, to Mount Horeb. Peddling is like walking with wheels.

Riding through Riley, I thought about a friend who is ill. She wants to see Riley. Someday she will see Riley and Abbey and I will be with her then. And of course then I started thinking about Social Security -- how it is there for people when they're older like my grandparents and how it is there for people when they're sick and can't work. In 2 weeks, I'll hit 10 years since diagnosis with ms. This is a milestone for many reasons including celebrating my continued ability to hold a job. That was one of the scariest things to me when I learned that I had ms -- that at 10 years following diagnosis, 90% of people are unable to work.

Well, if I couldn't work, even at age 36 I'd still be able to collect social security. It wouldn't be much, but at least I wouldn't starve, which is how the so-called "free market" used to treat people before people elected a congress and a president who created it.