In 2014 Doug’s big ride will be “Ride the Rockies.” Ride the Rockies is a weeklong annual bicycle tour through the Colorado Rocky Mountains. The route changes each year but always includes scenic roads with challenging and breathtaking (literally in my case) mountain passes.
In 2012 Doug and I were fortunate to have been invited by the Davis Phinney Foundation to Ride the Rockies. Doug said, “Sure sign me up! I would love to go on a 400+ mile bike ride with five mountain passes and over 20,000 vertical feet of climbing, raise money for the Davis Phinney Foundation and spit in the face of Parkinson’s disease.” Ok, those weren’t really his words but I think that was his sentiment.
So, off we went. For Doug, usually a self-supported solo rider, this would be his first supported ride and he would share the road with 2,000 other cyclists. For me, this would be my first big ride ever. I had never ridden up a mountain pass or really ever been much higher than 700 feet above sea level on a bike.
We spent the week before the ride acclimating to the altitude in Steamboat Springs where Doug’s incredibly generous friends, Anita and Rich put us up in a fabulous resort. We relaxed around Steamboat Springs and took in the Wild West.
On Saturday we headed to Gunnison, the starting point of Ride the Rockies. During the nearly four-hour-long bus ride from Denver to Gunnison, I thought to myself, they are taking us deep into the mountains… to the middle of nowhere. I was intimidated.
We finally arrived in Gunnison where the Ride the Rockies camp was brimming with energy and excitement. After a long day of travel we set up our tent and tried to get some rest. The next morning was freezing cold. It took us quite some time to eat breakfast, tear down the tent and get on the road. Actually it took us two hours!
Ride the Rockies camp in Gunnison
We learned a few things about how to pack for Ride the Rockies the hard way. I packed as though RTR was going to be a camping vacation. We were carrying all of our clothes from the week in Steamboat plus a few major, heavy and unnecessary items like camping chairs. RTR would transport our bags to each location but we lugged them around the campsites.
I couldn’t convince Doug on the first day to ride without his panniers. He refused to let go of being self-sufficient. In the shuffle of setting out in the morning he didn’t even go through his panniers to eliminate non-essentials. Doug and I went on many training rides to prepare. He can outride me any day. But he was slow carrying extra weight. He was also riding his heavy touring bike, as it was the bike he had set-up with the pannier rack. At the end of the day I found out that he had a six-pack of coca-cola in his panniers!
Day One: Gunnison to Hotchkiss 79 miles
Day one was a brutal day for me. 79 miles isn’t very far but the endless hills were a killer under the relentless sun. The climbing started after the first twenty miles and lasted for… twenty miles! There weren’t any mountain passes on this day just an ascent to the top of beautiful Black Canyon. I had an amazing feeling of relief when I reached the top. The scenic overlook was almost worth the pain I felt in my knees.
At the top of the canyon I sat next to a young man in tears. He was upset because he had taken the sag wagon. He told me about how he had trained for several months and that he was disappointed with himself that he gave up riding on the first day. I couldn’t help but notice his bike. It was a mountain bike with tires that looked like they belonged on a motorcycle. I tired to comfort him and explain that his bike and extra-wide tires added substantially to the work of the ride. Then Doug came rolling up the hill completely bushed, saddled with all of his gear.
There would be one more short but steep hill on the descent to Hotchkiss and then it was smooth sailing all downhill for the next 20 miles.
To be continued…
I had to have a better picture come up than the one of me just after surgery. That’s why I put up that last post, entitled “A Lazy Post”. I mean when I look at that picture of me taken in the recovery room, it reminds me of a turkey or something, just before you put it in the oven to bake. I’m aware that some of those pictures in the last post are repeats of previous posts, but I don’t want to be remembered as a turkey. That being said, some of you probably think I am a turkey anyway, but that’s OK.
I’ll try to be a little more profound with my next post.
Several people have asked me to comment on my post surgical results. I believe the main benefit, right now, seems to be a decrease in my “dyskinesia” and “bradykinesia”. Dyskinesia is uncontrolled muscle movement, it is associated with flailing arms and legs. My dyskinesia is not that bad, right now it manifests itself in less dramatic ways: my shoulder or head move without me wanting them to. There also seems to be some improvement in how long I can go before I have to take another dose of Sinemet. That in itself sounds good, but what happens is that I forget to take it (because I’m feeling good) and then become very stiff (bradykinesia) and my movements really slow down. Then it takes 45 to 60 minutes for the pill to kick in.
I may have mentioned before (in earlier blogs) that Carbidopa only has a half-life of about 45 minutes. That means that 45 minutes after you take the drug only 1/2 of what you took is still working. Forty-five minutes after that, only have of that amount is available. What researchers have tried to do is use different metabolic pathways to get the drug to your brain and increase the half-life. One such drug is called Stalevo. I was on Stalevo, but am now back on a drug called Sinemet. I like Sinemet because it is a lot less expensive.
Getting back to the stimulator: It has to have its output programmed. For example, the amplitude, pulse width and frequency are all important. I don’t know if the signal shape (for example sine wave or square wave) is important or even if it can be varied.
So far I’ve had two stimulator sessions. The first was interesting because when I first entered the room I commented, as did several others, about how cold the room was. After the doctor had entered some new settings, I said it was nice how they were able to get the room temperature up so quickly. The doctor and nurse exchanged glances: “You’ve got the amplitude too high, it’s affecting his hypothalamus,” the nurse said. “Look his face is turning red!”
The room temp had not changed but my brain perceived it as if it had.
The doctor quickly dialed back the settings and the room felt chilly again.
I’m not talking about my goals. I’m talking about my sleep dreams.
As far as I’m concerned, I live in two places: one is here, on planet earth. When I fall asleep, I usually visit another place. It is not always a happy place. Most of the time someone is trying to kill me. I wake up screaming, yelling, fighting. I punch the wall or my poor wife. One time I bit my wife on her arm; it took two weeks for the bruise to go away. I could feel her tissue give way when I bit into her arm. I had no choice: I thought she was a vampire trying to kill me. Another time, in an effort to jump behind a log and hide from my pursuers, I actually jumped out of bed. You should know that is about a 30 inch drop from the bed top surface to floor, and I never woke until I hit the floor.
My dreams are vivid, they are life-like. I see colors, have conversations, and everything has great detail. I have snowball fights, fly through the air (that’s usually fun) and walk around. But all too often things turn into nightmares. Horrible nightmares. Horrible.
My neurologist has suggested not taking my meds just before going to bed, and he is right, doing so seems to stop the nightmares. But the other part, the vivid part remains. This is not a new thing. I’ve had vivid dreams for years.
For me it is one of the four symptoms of Parkinson’s. The other three are lack of, or severely diminished, sense of smell, chronic depression, and balance problems. I’m not saying that if you have vivid dreams that you have Parkinson’s.
The problem is that you can’t just go to your doctor and say “Please check me for Parkinson’s.” There is no test; no way to draw a blood sample and know. There are no genetic markers. A diagnosis is often made by giving the patient Carbidopa-Levodopa and seeing if it helps. If it does , you have Parkinson’s. If not, you don’t. That’s a really lousy way to diagnose such a serious disease, but that’s all we got. That’s what I’m trying to change.
I’ll be the first to tell you: I don’t believe in ghosts. I don’t believe in UFO’s. And I don’t believe in spirits. So how do you explain this (true) story?
In the summer of 1972 my, father, grandfather, brother and sister drove down to St. Louis from Cleveland. My uncle lived in St.Louis, along with his wife (my favorite Aunt Mary) and kids. Uncle Eddy lived in an 100-year-old house.
It was a big place, with three floors, a central stair case and maybe five or six bedrooms. It was a cool house and had a back stair well, basement and back porch too.
I was 20 years old, full of energy, and I’d bound up the stairs two a time. One day I was running up the front stairs, intending to go to one of the bed rooms. When I reached the top, I saw the door to the third floor. I had absolutely no intention of going to the third floor, but when I saw that door, I instantly changed my mind, and ran up tat third flight. At the top I made a180 degree turn to my right.
What I saw will remain imbedded in my mind. It was an old man with long hair, all grey in color. He was sitting qt a desk and there was a window behind him.
He looked at me in a surprised fashion, as if he was not expecting to see me.
Without a word he got up, and walked out through the window.
I can’t explain what I saw. I went down stairs and told my dad. He laughed then he realized how shook up I was.
Did you really see that he asked? Yes, I replied, that is what I saw.
To this day I can not explain it. Whenever I think of it, I get goose bumps.
But that’s what I saw, And that is a true story.
This particular blog is not about me, but is about a family friend, Courtney Miller. Courtney is pursuing a Doctor of Musical Arts Degree at Boston University. She is an oboist. The amount of dedication and work she puts into this is simpy amazing. I’ve never met anyone as dedicated as she. I know professors, doctors, engineers, but none of this people show this dedication.
Focused, intent, well-spoken and talented. Do I sound like a fan? You betcha!
So if you enjoy classical music please check out her music video. You’ll be glad you did. Doug