Scott 4 Walks

One Year Goes Fast

2011-04-01T19:44:00.000-07:00

Theo is now a year old. I've been doing the work I do for 9 years as of today.

A year has pasted since last writing.

Theo attended his first mass protest rally. Then his second. Then his third. Many people have been taking a lot of walks in Wisconsin to demand continued collective bargaining rights.

Wisconsin Republican State Senator Dale Schultz deserves much credit for not just following party instructions. Thank you Senator Schultz for standing up for the right to collectively bargaining. Thank you for appreciating history. Thank you for doing the right thing.

Thank you for recognizing the thousands of people in Senate District 17 that contacted you and spoke to you advocating for continued collective bargaining rights.

The incompetence and arrogance of Governor Walker's people is remarkable. Their attack on collective bargaining is being thwarted.

I am hopeful this will also lead to the continuation of BadgerCare, Senior Care and Wisconsin Family Care. These well run programs that make people's lives better than they could be caused individually are examples of good government.

The Wisconsinites of the 17th demonstrated how people can take action together to positively affect their lives.

In a year from now, after all our walking, hopefully we will have a Wisconsin Governor that wants a good government that helps people have a chance.

As much as I wanted to write about Bayer Pharmaceutical's problems with sterilization alcohol pads, that will have to wait.

$3,061.75 per month, Expired Patent, No Competition

2010-05-25T17:40:00.000-07:00

$3,061.75 per month, Expired Patent, No Competition

As I said before, if the German company Bayer Pharmaceutical could determine another way to extract more money from me and the large employer group health insurance plan that my employer provides me, I was confident they would. They recently increased the price of my medicine again. I can think of no other technology product whose price doesn't decline over time, especially when there is no improvement in it's effectiveness, if only due to economies of scale and process improvements that reduce costs..

I remember when my same medicine cost only $960.00 per month. I was reminded recently when I found a mix disc I made to possibly commence the rest of my life using this medicine -- the one with uncertain effectiveness, uncertain safety, possible unpleasant side effects and if nothing else, the sensation of a self administered bee sting every other day -- I found it in my wife's car's cd player. It was the only cd the car could play, all others just skipped, including brand new discs out of the wrapper.

If our political system needed another exhibit describing its current state of being broken, here it is -- my medicine now costs, $3,061.75 per month while never getting more effective. Big Business is buying the government we get. The medicine's patent expired during 2007. The Food and Drug Administration (FDA) doesn't even have a process for approving a generic version of my medicine. Congress never created this needed approval process for medicines like the one I use. Without FDA approval no medicine can be sold in the United States including a generic version of my medicine. Pretty cool huh, if you are the CEO of Bayer Pharmaceutical.

Bayer Pharmaceutical didn't even invent the drug. It was developed at universities around the world, including in the United States.

It's been too long since writing here. Since my last post,

My wife carried a baby to term -- she amazed me and she is well, thankfully.
Our healthy son was born.
Our son added more than 8lbs in the past 12 weeks, he was 7lbs at birth.
President Obama signed health insurance reform legislation into law.
My fantastic sister and her cool long-time boyfriend married.
A lot of people searched for jobs, but too many searched for too few.
Wages for most (North) Americans in the US did not increase, especially in real terms.
The search for ms cures continued, with possibly a major advance coming from Europe, by studying Chronic Cerebrospinal Venous Insufficiency (CCSVI).
By almost any measure the National Multiple Sclerosis Society has become even more effective.
Money spent to wage war in Iraq and Afghanistan has eclipsed $1 Trillion ($1,000,000,000,000.00, that's equal to $186,439.33 for every person living in the state of Wisconsin and a lot of money to me) and I only feel safer because private health insurance companies can no longer discriminate against me and I no longer have to worry about reaching a life time health care money spending limit thanks to President Obama and mostly Democratic members of Congress (and groups like Health Care For America Now, churches, community organizations, many labor unions, like SEIU and many AFL-CIO member unions that together made reforms politically possible.)
We still need health insurance reform, like Medicare for All

Our final 2009 Mix:

SONG, ARTIST, ALBUM

Waitin' For A Superman, Iron and Wine, Around The Well
Don't Forget Me, Case, Neko, Middle Cyclone
Never Had Nobody Like You, Ward, M, Hold Time
Belated Promise Ring, Iron and Wine, Around The Well
Whole Lotta Losin', Monsters Of Folk, Monsters Of Folk
Quiet Dog Bite Hard, Mos Def , The Ecstatic
Roses, Mos Def Feat. Georgia Anne Muldrow, The Ecstatic
The Palace At 4 am, Newman, Carl 'A.C.', Get Guilty
Overjoyed, Circulatory System, Signal Morning
Silver Trembling Hands, Flaming Lips, The Embryonic
Over It, Dinosaur Jr, Farm
Nothing To Hide, Yo La Tengo, Popular Songs
Deeper Down, Wilco, Wilco (The Album)
82 Onewasjohnny, Todd, Singles
Honey Bee, Zee Avi, Zee Avi
Such Great Heights, Iron and Wine, Around The Well
Avalon Or Someone Very Similar, Yo La Tengo, Popular Songs
While You Wait For The Others, Grizzly Bear, Veckatimest
Summertime Clothes, Animal Collective, Merriweather Post Pavilion
The Right Place, Monsters Of Folk, Monsters Of Folk

Not Done Yet

2009-12-20T07:41:00.000-08:00

Dealing

2009-12-11T11:48:00.000-08:00

I am hearing that the "public option" is being dealt away from health care reform / health insurance reform. This is probably very bad news.

It concerns me that when the cost of health insurance goes up because no one can be denied coverage anymore or worse dropped because they learn they've got a tough medical diagnosis (like ms or cancer...), that supporters of reform will be blamed for the health insurance price increase. Making the system universal and more efficient would have helped control costs and it concerns me that people won't be hearing that, just the blame.

I am also hearing that there is a possible compromise in the dealing that would lower the age ability to "buy into" medicare coverage. That could be an exciting development, depending upon how low the age is lowered.

I am hoping that House Speaker Rep. Pelosi will be bold in the dealing and fight for expanding medicare access, create a pathway for FDA approval of generic biological drugs and eliminate the donut hole in medicare part D.

Friends are dealing with the third death from cancer of female friends in their 30s this year. 2009 has been a difficult year.

I guess we have much to be thankful for. Thanks to government action, no one is losing their savings when banks are failing. Thanks to government action, Abbey and I have very high quality water (we had it tested). Thanks to government action, I am not worried about the safety of the food I just purchased (and if there was a reason to be concerned, it was because there wasn't enough government regulation). Thanks to government action, there will be new research funding the search for cures (including for multiple sclerosis). Thanks to government action, the price of a pack of cigarettes went up and fewer people will be smoking as a result helping to keep us healthier. Thanks to government action, I could write all a letter and tell you about it via "snail mail" for less than fifty cents (unlike the more than $10 I pay to send the same news via FedX or UPS).

Ill

2009-11-18T09:51:00.000-08:00

I am home ill from something, hopefully just a cold. I almost never miss work, even when I don't feel at my best. Being home ill gives me room to remember back in the 90's when colds coincided with new ms induced symptoms. I am hopeful I won't have any new challenge tomorrow. The maker of my medicine would probably like to claim credit, but my improved resilience over the decade is probably even more on account of my improved lifestyle/environment.

PHARMA, and the big drug companies overstate themselves. When you hear that health insurance and health care reform will hurt the search for cures, remember:

1. Publicly owned drug companies have a responsibility to their shareholders to maximize returns that trumps healing people.
2. Drug companies' need to maximize profits gives them cause to not develop new and potentially more effective medicines if a new medicine reduces profits (think don't compete with yourself -- to re-enforce the point, google "bayer pain reliever", the maker of the first pain reliever seems to still only be making the pain relieving aspirin. Bayer is a German company and in Berlin, the Bayer label is everywhere -- At $2,800 per month, the cost of my Bayer Interferon-B medicine, I wonder for how much Bayer advertising in Berlin I am responsible?

3. Drug companies spend more money advertising than they do developing new medicines.
4. The biggest funder of new medicine is the US National Institutes of Health (NIH). Through the NIH, government helps make our lives better. The NIH issues grants to hospitals and research universities that help find treatments and cures (and this is really really important because developing new medicines is expensive and most are duds. In order to continue advancing the science that finds cures, the NIH socialized the risk of new medicine development. Publicly owned drug companies and their shareholders have been burned trying to develop medicines.).
5. In our globalized world, science advances planet-wide. The future of science isn't dependent on any one country, including the United States. The future of science isn't dependent on any one pharmaceutical company either.
6. You should ride your bike with me during the 2011 "Best Dam Ride Ride" [Against MS and for an MS Cure]. It was a great experience during 2008 and during a break during that ride, I learned that the National Multiple Sclerosis Society has granted more than $550 million to help fund a cure.

I hope this settles the question about the effects of new medicine development after health insurance and health care reform.

Health care reform and health insurance reform means saving lives, preventing bankruptcies, unleashing the creativity of those who will finally be able to launch new ideas and businesses liberated from the current sickness industry and saving current businesses from the health insurance nightmare of annual double to triple inflation price increases.

Please call your US Senator to encourage their support for reform! Thank you.

Got Liberation?

2009-11-12T18:32:00.000-08:00

I was trying to make the Packers' condition a metaphor for something about health care reform. I couldn't. The Packers forgot the blocking part about football. And about the opposite of blocking: rushing the quarterback.

The House Passes Health Bill.

This is really great news for people living with MS. The Congress is finally creating a pathway for generic biological drugs, after the Senate votes affirmatively too. And I will be able to buy health insurance again. And medicare will receive the money to pay doctors properly. And some doctors' pay will be tied to keeping people healthy rather than getting paid because we're sick or broken. And there will be new programs to pay for the training of more doctors and nurses. And there won't be a maximum lifetime health insurance coverage anymore. And now having health insurance won't mean having to be tied to any individual person or a job -- for some this will be liberating.

I just got liberated from miserable internet access. I just got liberated from having to drive my car to see great music because I think I will walk to see Yo La Tengo during January.

Toes

2009-10-03T19:35:00.000-07:00

I've been doing so well for so long, sometimes, briefly I'll forget that my spinal chord is pocked from the gnawing of my immune system's past "episodes".

During Tuesday evening, I started negative noticing my right foot more than I typically have during the past few years. Wednesday morning, I was aware that I had toes on my right foot, but it was like they were not attached to my foot. The balls of my right foot had significantly reduced feeling -- negative feeling. Walking seemed like my foot was a sponge. Placing my step was a mental exercise, visual guidance was important so as not to trip, fall. I realized that on Sunday, I had strange feelings of emotional waves, briefly, unexplained. Monday, I got choked up at the sight of a television commercial while eating breakfast -- I hadn't considered it at the time, but I remembered that sometimes during previous "episodes" of civil warfare, it wasn't unusual to more easily get emotional.

Thursday morning, I awoke fully aware of my right foot and my toes, but some numbness persisted. I was glad that my toes felt attached again. Abbey and I went to the Y after work on Thursday. I had not gotten much physical activity of late, working longer hours and remodeling our new home and all. I rode 7.62 miles during 22 minutes with the bike to 12 resistance. I couldn't believe it.

When we got home from the Y, I felt pretty good, but I struggled putting my right foot in front of my left. I asked Abbey not to walk behind me up the stairs out of concern that I might trip, fall and knock her down rolling.

I thought about walking with a cane again today, not that I need to use one at this time. My walking is better than Wednesday now.

Made a first draft 2009 mix:

Track Title	Artist	Album
Waitin' For A Superman	Iron and Wine	Around The Well [Disc 1]
Don't Forget Me	Case, Neko	Middle Cyclone
Never Had Nobody Like You	Ward, M	Hold Time
Belated Promise Ring	Iron and Wine	Around The Well [Disc 2]
Whole Lotta Losin'	Monsters Of Folk	Monsters Of Folk
Quiet Dog Bite Hard	Mos Def	The Ecstatic
Roses	Mos Def Feat. Georgia Anne Muldrow	The Ecstatic
The Palace At 4 am	Newman, Carl 'A.C.'	Get Guilty
Overjoyed	Circulatory System	Signal Morning
Nothing To Hide	Yo La Tengo	Popular Songs
Deeper Down	Wilco	Wilco (The Album)
Such Great Heights	Iron and Wine	Around The Well [Disc 1]
82 Onewasjohnny	Todd	Singles
Avalon Or Someone Very Similar	Yo La Tengo	Popular Songs
While You Wait For The Others	Grizzly Bear	Veckatimest
Summertime Clothes	Animal Collective	Merriweather Post Pavilion
The Right Place	Monsters Of Folk	Monsters Of Folk

Running to the light

2009-09-12T08:41:00.000-07:00

Will those of us so hungry for health care, health insurance reform, be a bug, zapped when we think we reached the light?

I can see the prospect of reform, it is right there, behind Sen. Max Baucus. I know it is there, but I'm not sure what it looks like yet. I know what I want it to looks like. I think I'd like it if if looked like the government health insurance my grandparents have, medicare. I think I'd like it if it looks like medicare with a prescription drug benefit that has no donut hole -- I'd happily double my medicare taxes for it to cover me and my family too; I think my employer would too, probably.

But are we getting blinded by the light of reform?

I am concerned that sick people like me, will get a health insurance public option -- a public option that is a group of other sick people, crowded separately by ourselves without healthy people to optimally spread risk. Yeah, we can celebrate that we can finally buy health insurance, but will it be ridiculously expensive and ridiculously inadequate with big co-pays and coverage holes (especially if our government doesn't subsidize it, as our President promises)?

I am concerned that reform will not help bring new medicines to sick people like me, as quickly as we need, as is possible -- sure there will now be a pathway route for FDA approval of generic biological drugs, like for the medicine I use (that now costs $2840 per month, up from $960 per month during 2002). My Congresswoman, whom I like, seems to have successfully scored 12 years of "exclusivity" for biological drug makers. This is a multi-billion dollar gift to an industry that spends more money advertising than on research for cures -- and in our country, we've socialized (yes, socialism) risk developing new drugs because so much of the cost to develop new medicine is bourne by public research universities and public funding from the National Institutes of Health (NIH). If you are a corporate officer at a drug making company or maybe if you own stock in drug makers, congratulations. As a patient, I can expect drug companies to maximize shareholder value and to withhold or retard development of new, potentially more inexpensive or more effective medicines to heal sick people like me if it means competition with drugs they already market (no competing with themselves).

If you need 16 ounces of water to drink and the person holding the gallon water bottle hands you a 4 ounce glass filled with water, what do you do?

I will call my Senators to ask them to support health care reform. Ask them to support the kind of reform sick people like me need, the kind of reform healthy people who aren't sick yet need. You should call your members of Congress too!

11 years 2 years

2009-08-02T19:02:00.000-07:00

Last week marked 11 years of living with ms. And it was my niece's second birthday. All of it, everything, what a momentous month, July!

I am a little frustrated by congressional progress causing health insurance reform and health care reform. That should be disprogress or unprogress or illprogress? I have great insurance and I want everyone to have great insurance too, everyone to get quality affordable healthcare when they need it.

Where are the North Dakota populists? Will Montanans again elect Max Baucus in 5 years? Montana deserves better representation.

I am sending another message to NMSS activists. We need to visit with our elected members of congress, to sensatize them to the needs of patients. Sensatize...

Last week started with this news: • Research links broken marriages with chronic health problems

I've met all kinds of people in different kinds of 'marriages' since I began living with multiple sclerosis. I have met people who have remained in a bad / dysfunctional marriage in order to continue to stay on a spouse's health insurance. I have met people who have remained "legally" married in order to continue to stay on a spouse's health insurance, even though the couple really isn't a couple anymore, living separate lives. I've met committed to each other couples who are legally divorced (but they wear rings), even with kids in the house, so that the person with multiple sclerosis can absorb the huge medical debts and declare bankruptcy so as to not destroy the family. Our country needs Health insurance reform, health care reform.

I think there are counselors who will sometimes recommend legal divorce to help keep people together if one of the spouses has a catastrophic medical condition with ever mounting debts (then bankruptcy).

I have been posting this message variously (and people are actually visiting this blog):

My medicine that cost $960 per month in 2002 now costs $2800 per month. The medicine hasn't gotten more effective. The U.S. patent expired in 2007. The drug is owned by Bayer Pharmacutical and in Germany, a person can buy a more inexpensive generic. The reason there is no generic is because the FDA has not been empowered to license generic "biological" drugs. Please ask Rep. Baldwin to support HR 1427, which would help create a pathway for safe generic biological drugs. You can call representative Baldwin at (608) 257-9800; she sits on the congressional committee handling this. Please ask her to support HR1427 -- for too many people, their insurance requires them to pay a percentage of their prescription as a co-pay, sometime as much as $900 per month for their medicine affecting who might even get the medicine s/he needs. We don't have PHARMA's radio and tv budget (if you seen/heard the recent PHARMA ad blitz) -- you can help make a difference for thousand of ill people and yourself because this is one of the reasons your insurance is getting so expensive. Thanks from a Middleton neighbor.

Talk to your member of congress. Our country needs Health insurance reform, health care reform.

You could be one illness from bankruptcy

2009-07-07T20:11:00.000-07:00

Did you call your Senator yet at 888-436-8427? [Support a public insurance option!] In 2007, nearly two-thirds of all personal bankruptcies filed across the country were linked to illnesses, loss of income or high medical bills, according to a survey published in June by researchers at Harvard University and Ohio University. Of those cases, 78 percent of the debtors had health insurance when they first got sick.

Spring

2009-06-07T17:30:00.000-07:00

I ran 5 kilometers today.

Catch up

2009-06-03T19:25:00.000-07:00

I ran 2 and a half times around the pond today, like the 5th or 6th time since the spring high-water. I've been inspired and its proving a good way to work stuff off. So I am at the computer now, feeling good in my "Extra Vigilant" t-shirt.

I've joked, "all the cool people are getting diagnosed with ms". I've known Will Hart has been living with ms for a while and he recently shared his diagnosis in an interview. I gave him my "join the movement" t-shirt a while ago via a mutual friend. There are a handful of bands that generate a sound that can create the audible sensations of ms at very loud volumes. Will Hart is a member of the Olivia Tremor Control, a band the can induce such sonic sensations. I have been a fan of the Olivia Tremor Control since their music accompanied long distance drives across Montana and their single, "New Day" appeared on my mix for the moving drive back to Wisconsin.

Now if you like that "New Day" song, go buy the album "Black Foliage"!

Gearing Up!

2009-02-25T16:44:00.000-08:00

I am looking forward to this year's Legislative Affairs Day, March 5th at the State Capitol. Close to 100 people from across Wisconsin will gather together against Multiple Sclerosis (MS). I think that every year we are even more effective than the last as more people travel to Madison to share stories and advocate together.

At our first Legislative Affairs Day, five years ago, we successfully secured the money to fund MS screenings for Wisconsin women through the Wisconsin Well Woman Program. The majority of people living with MS are women. This legislative accomplishment was made possible by Wisconsin volunteers who visited legislators and shared their stories about MS.

I look forward to talking to my Representative and State Senator this year about the problem with allowing "Tier 4" insurance drug co-pays to exist in Wisconsin. Tier 4 drugs include biological drugs scientifically proven to reduce the incidence of MS disease activity in people living with MS. My interferon drug, Interferon-B, now costs $2600 per month. Tier 4 co-pays are typically 25% or even 33% of a drugs costs.

For a person living with MS, who has Tier 4 drug co-pays in his/her insurance plan, s/he can have an $850 out-of-pocket expense -- that's like a mortgage on a modest home in many Wisconsin towns.How free is this person? Can't go shop for a different policy because no insurance company will sell him/her one. People who need this medicine to keep moving (and working and staying optimally productive) need it affordable or too many will decide to stop using it. And some will find themselves bound to a job, for only insurance that covers necessary healthcare services.

Tier 4 drug co-pays are a recent development in health insurance. Insurers are increasingly offering health insurance with Tier 4 drug co-pays as a way to "control costs" [for them]. Plans with Tier 4 drug co-pays cost less. Employers that provide employee insurance, looking for a way to "control [the] costs" might seek to save money [for themselves] and buy this insurance. Maybe your employer has already announced that your health insurance has changed?

Employers have an economic interest in buying health insurance that include a Tier 4 prescription drug plan. If you do not have a health insurance plan with Tier 4 prescription co-pays and you use a biological drug, you are lucky -- for now, but be aware you could be next!

I'm going to Legislative Affairs Day to advocate to end Tier 4 health plans in Wisconsin. We need to end Tier 4 -- there needs to be a cap on how much out-of-pocket any drug costs.

Exciting Times

2008-12-09T18:31:00.000-08:00

I'm optimistic for results in the effort to pass legislation that causes quality, affordable health insurance for every American. There are so many people working to this end. I am so looking forward to 139 days from today to assess our progress.

Bayer, the company that now owns the patent on Interferon-B, the drug I use, has rolled out a "new" 30 gage needle for the injection. I think my first injections, 7 years ago when the price of 15 injections was only $960 per month, were with a 30 gage needle. Then the last company that owned the drug patent did a reformulation and designed a new system to "ready" the injection -- they sold 15 injections with a larger needle at a cost of about $1300 per month. No one asked for my opinion, but I prefered the $960 per month drug version because I had more control of the injection preparation process (and even though I'm insured, I prefer to not enrich an industry that spends twice as much on advertising than on research to find cures).

Now Bayer, in their brilliant greediness has reduced the number of "monthly" injections to 14, even though they kept the price of the drug, no more effective than when I started using it in 2001, at the private health insurance killing price of only $2360 per month. I'm sure if they can think of another way to squeeze another dollar out my insurance company, they'll figure it out.

Can you believe that their patent expired a couple years ago? And they have no competition?

The hardest walk

2008-10-20T17:35:00.000-07:00

You thought I was gonna talk about the Jesus and Mary Chain song here, didn't you? It is one of my favorites by them.

I was thinking about the race for President.

The next President will profoundly affect healthcare for the next 4 years and beyond. Our Federal Government spends like 60% of all healthcare money -- that's powerful.

And its shameful that the Fed isn't doing more to affect healthcare. Our Federal Government should be negotiating with drug companies to lower drug costs with that 60% collective buying power. To protect our Federal Government's resources that are paying for new healthcare facilities, our Federal Government should negotiate with Healthcare companies any time one wants to build new facilities. Our Federal Government should create an FDA pathways to approve generic biological drugs and help remove barriers to new therapies. The Federal Government should allow for the importation of foreign drugs too -- like Europe's generic interferon-B drug.

Federal Government agencies can promote research, even say what research can't be done. Research can find cures, save lifes, save money. We need more research and our Government can promote it.

And the next President will affect who has health insurance, whether it is affordable and who does not.

Senator McCain's health insurance plan will increase my family's taxes by making us pay taxes on the cost of our benefits. My employer will lose the tax deduction for providing employee health insurance. My insurance costs $14,000 per year (a $2,000+ new tax) and McCain's tax credit of $5000 to buy our family's insurance is a joke. No insurance company will sell me any health insurance. If I could somehow get a plan, it will be a government subsidized plan filled with other sick people so the rates will be crazy expensive.

I hope everyone votes. Please vote.

2 miles

2008-09-22T17:12:00.000-07:00

I did something today, that I've not done since I was probably 17 years old. Abbey and I ran 2 miles together. She was nice enough to run with me (she runs more regularly and usually farther than 2 miles). Back when I was 17, I was running cross country in high school. I wasn't a very good runner, but I liked getting into good shape for basketball season (I wasn't a great basketball player either, but being 6th or 7th guy off the bench meant I usually scored a few points each game).

The temperature outside today was in the mid 70s. At about the 3/4 mile point, I was aware that the flesh of my right leg, the lower femor area was growing numb. A mile later, both knee areas were numb and my forearms, especially my right forearm was very numb. Abbey helped walk me to our home. Climbing the stairs, my head was spinning.

Fortunately, Abbey turned the shower water on at a room temperature for me. Conditions normalized after about 10 minutes of not-too-warm water runner over me. I ran two miles!

Abbey is always doing things to assist me. Recently, she picked up my meds for me. When I got home, she handed me the box of Interferon-B, noting that the box color changed. She wasn't sure the box contained the same meds I usually got from the pharmacist. I told her, they must have changed the price. I've noticed when the box colors change, the price is usually increased. When I looked at the receipt, yup, the price was increased from $2240 per month to $2369 per month. Same meds, different color box colors, no more effective, just more expensive. I wonder how many other people using biological drugs witnessed the color of their med box change this month? This is at least the second time the box color has changed since the start of the year.

If only Abbey had the power to cause congress to pass a law that created an FDA approval route for generic biological drugs -- the patent on Interferon-B is expired -- she'd do it if she was a member of congress. My parents saw Barack Obama in Green Bay today -- I'm confident that Barack Obama would create an FDA approval route for generic biological drugs.

Everything is political

2008-08-26T16:20:00.000-07:00

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.

Steady

2008-08-21T18:02:00.000-07:00

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.

We did it!

2008-08-05T17:45:00.000-07:00

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.

Heat

2008-07-29T16:34:00.000-07:00

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

2008-07-28T15:02:00.000-07:00

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

2008-07-22T19:42:00.000-07:00

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

2008-07-22T19:12:00.000-07:00

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

2008-07-16T19:11:00.000-07:00

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

2008-07-14T17:33:00.000-07:00

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.

2008-06-30T19:21:00.000-07:00

Abbey and I are preparing to ride bicycles in this year's Best Dam Bike Ride (against MS) August 2-3. We were at the YWCA tonight. I like being a member of the Y and riding the stationary bike.