Tuesday, April 23, 2013

Deciding to do the DBS

The DBS (Deep Brain Stimulation) treatment is an elective option that is available to those with Parkinson's Disease contingent upon meeting qualifications based upon the outcome of their longevity with PD as well as to testing associated that will help the doctors determine the patients cognitive abilities and response to medicine on and off.

Having been challenged with PD for 5+ years, I was beginning to see my off cycles more prolonged and harder to work through. In the past 6 months I have been considering if DBS is the next step for me, putting it off at times merely for the fact that I would be allowing my head and my brain to be drilled in to.

Last August 2012, I was invited to participate in a golf tournament that knowing what I know now, would be a life changing experience.

Meet Chase Robertson:

Chase is my cousin on Leisa's side of the family. His great grandmother, Ruth Bowen, and Leisa's grandmother, Twila Knight, are sisters. Twila and Ruth's husband, Bob, have passed away.  Bob was challenged with Parkinson's disease.


Bob and Ruth Bowen

After having married Leisa, and getting to know the family better, I got to know the Bowen family fairly well, and always felt good around them. Bob and Ruth, their children, Bobby, Karen and Sharon, Scott, were often at family events. I also did some yard work at Bob's home. They were always so good to me.

Two of Bob and Ruth's granddaughters are Debra and Jacque.
Both are beautiful women who are blessed with great musical talent, have been contestants in the Miss Utah and Miss America beauty pageants, performed in Nashville, USO Tours, etc. In other words, very talented and beautiful individuals who I knew, but can't say that I knew very well.

Let's cut to "the Chase". Debra's son Chase has chosen for his Eagle Scout project, to do a charity golf tournament in honor and memory of his great grandfather, Bob Bowen. This would be known as: The Bob Bowen 4 Parkinson's Charity Golf Tournament.

See www.bobbowen4parkinsons.blogspot.com

I became aware of the event and was invited to participate. I was fortunate to have my employer, Knight Transportation, whose owners are related to Aunt Ruth, to donate funds to allow us to have three foursome's participate. I was also invited to give a short speech at the awards dinner after the golfing was over.

Also there to participate and speak would be Brent Peterson, who is a former Nashville Predators hockey player/coach, and is challenged with PD. He has had the DBS surgery and was going to speak about it that day. His wife, Tami, was with him, and soon recognized my conditions and felt prompted to encourage me to look further into the DBS process. She said it helped Brent so much and was sure that it would help me.

I listened to her and felt positive about what she was telling me but put it off thinking that then was not the time for me to do it. Within the next few months, as I noticed my Parkinson's progression, and my off cycles became more prolonged, I looked further into it. I talked to many people who had had it and always got good reports about it. I talked to Dr. Mahant about it and she seemed okay with it, but ultimately it was my decision.

I also got to know Joey Gregan, who works for Medtronics, the makers of the DBS device and as I got to know him better, I was able to ask questions and get a better feeling about the process. I proceeded with the testing and was soon scheduled for it on April 18.

When I called Debra Robertson, Chase's mother, to tell her of my scheduled surgery, she was very pleased. Debra has always been one of my greatest encouragers and support. She told me that Tami and Brent would be very pleased and I talked to Tami that afternoon and indeed she was very excited. In my conversation with Debra, she told me that as Chase went before the board of review for his eagle project, when asked what he learned most from his project, he told the people there that his greatest desire was to have his cousin, Carl, in Arizona undergo the DBS surgery. Up to this point, even though I had felt good about my decision, I was still seeking a strong confirmation that it was the right thing to do. Knowing Chase had a strong desire for me to receive it, and hearing those words from Debra caused me to feel that was the answer I needed to confirm my decision. I am grateful for Chase for his maturity and strength, his understanding and a big heart, and his desire to do something good for Parkinson's Disease. I am grateful to have had this opportunity to participate in that golf tournament to get to know the Robertson family better, to meet Brent and Tami Peterson, and to have this be a major part of my decision to go through this process.

On the blog that was created for Chase's project, www.bobbowen4parkinsons.blogspot.com, this was information about Brent Peterson. As you read it, note the maturity of Chase. He is a special young man who will go far in many ways throughout his life. I love you Chase and am so very grateful for getting to meet you last summer. May we have many more golf outings!


Honorary Guest


We had the opportunity of becoming friends with a wonderful family known as The Peterson's. Mr. Peterson just retired as an assistant coach for the NHL team The Nashville Predators. Brent is also a former NHL player for 11 years and well respected athlete. At age 45 he was diagnosed with Parkinson's. It was devastating news for all who know him especially his family. Brent chose not to let this disease get the best of him. He has become an active spokesman and advocate for the disease. His celebrity golf tournament, Peterson for Parkinson's, has raised thousands of dollars for the Peterson for Parkinson's organization . Last year in December Brent had the DBS ( deep brain stimulus) implanted in his brain. What an amazing thing it is to see the video and how this device has changed his quality of life. I felt such a personal connection with Brent because our families are good friends and I too am an athlete and can't imagine what it would be like to be in the height of your coaching career, still have that competitive spirit he has and have someone tell you that you have Parkinson's.

Because he has been an inspiration to me, I felt it would be appropriate to invite Brent Peterson to fly out to the Bob Bowen 4 Parkinson's tournament I am organizing. He willingly accepted my request so he will be our honorary guest at the tournament. He will also be a guest speaker at the luncheon directly following the tournament. I believe he will be showing a video clip of the actual DBS device being implanted into his brain. In hopes of educating all who are there about this disease. I have chosen to put the money raised at the tournament toward Brent's Peterson for Parkinson's organization. The money will help people who have this disease but cannot afford to get the DBS device.
I may be young but I have seen and felt in my own experiences the happiness you feel when you serve others. My Great Grandpa was a perfect example of this. His life was dedicated to serving people. This happiness acquired through giving is what I hope to attain from this project as well as educating others about the effects and treatment options for this disease. I hope you will all come and help me raise awareness and money for this great cause.




Sunday, April 21, 2013

Recent Cakes I have decorated!



An Inspirational Biking Story


This is a very inspiring story about a very inspiring young man, Taylor Phinney, son of a very inspiring man, Davis Phinney. I am grateful for stories like this that show that there are some very great examples of true athleticism out there. Thank you Taylor Phinney!
___________

This is a story about a guy who finished last. Which is technically true. You can look up the results of the race, and you'll see his name, right there, lonely at the bottom. Taylor Phinney. USA. Finishing time of six hours, twenty-two minutes, fifty-four seconds. One hundred-and-ninth place. Last.
But this story is better than that.
First, about Taylor Phinney. Remember that name. You might already know it. Bike racer from Boulder, Colo., 22 years old. The son of two cycling legends, Davis Phinney and Connie Carpenter. A big dude on the bike, at 6 feet 5 inches, 180 pounds, Taylor Phinney is one of the most promising young cyclists in the world. He's already been to the Olympics twice. Won a stage of the prestigious Giro d'Italia last year. He is expected to have many great days in the sport.
Monday didn't begin like one of those days. Phinney was competing in Italy's Tirreno-Adriatico stage race, and this penultimate stage was a doozy. Up and down, down and up, 209 kilometers of punishment, including a 27% climb so comically steep that some riders got off their bikes and pushed them uphill. Many riders quit. Later the race organizer would admit that the stage was too difficult, even for elite pros.
Phinney didn't expect to win this stage. He just wanted to hang around, because the next day brought a time trial against the clock, and Phinney had a chance for a good result in that event. But the day soon unraveled. His legs weren't feeling great, and then his bike busted its chain. He had to get a replacement and chase his way back to the pack.
"I just was dangling," Phinney said on the phone, from his home in Tuscany. "We kept going over these really difficult climbs. I'd get back to the group and I would get dropped. I'd get back again, then get dropped."
Bike racing is a sport that fetishizes suffering. Anyone who's done it talks almost mystically about painful days on the bike, about the serenity achieved by pedaling through the agony. But even the best can only take so much. Soon Phinney found himself in a small group of 30 or so riders who had fallen off the main field, with about 130 kilometers, or 80 miles, left. The riders in the group began talking. Phinney said it became clear that nobody wanted to finish. Drop out now, get out of the cold. This is no shame. It happens all the time. Fight another day.
But Phinney wanted to fight now. He had to complete the race under the time limit to do the time trial Tuesday. "If I wanted to finish the race, I was going to have to do it by myself," he said.
So that's what he did. As the rest of the group abandoned the race, Phinney put his head down and pedaled. He was suddenly alone. The weather was miserable. It began to rain. And Phinney kept thinking of one thing.
"I would just think of my dad," he said.
Davis Phinney has lived with Parkinson's disease for more than half of Taylor Phinney's life. One of the great American racers of all time, a Tour de France stage winner and Olympian, Davis's day is often met by frustrating physical challenges. Tasks that were once simple take so much longer. Ordinary life requires patience.
That's what kept his son pedaling in the cold Italian rain.
"I knew that if my dad could be in my shoes for one day—if all he had to do was struggle on a bike for six hours, but be healthy and fully functional—he would be me on that day in a heartbeat," Taylor Phinney said. "Every time I wanted to quit, every time I wanted to cry, I just thought about that."
He had so many miles to ride. "It's kind of embarrassing," he said. "The race has gone by, and people aren't really expecting one rider slogging along by himself." Fans on the side of the road offered to push him up hills. But Phinney remembered a story his Dad had told him about one of his old Tour de France teams, making a pact to decline pushes.
Taylor would do the same. No pushes.
"He never lost his motivation," said Fabio Baldato, an assistant director for Phinney's team, BMC Racing, who was driving a car behind Phinney the entire route. "It was unbelievable."
"He wanted so badly to finish the race," said Phinney's teammate, Thor Hushovd, a former world champion.
Hours later, Phinney crossed the line, exhausted. He finished almost 15 minutes after the second-to-last rider, thirty-seven minutes behind the winner. He didn't make the time cut for the day, which meant he couldn't compete in Tuesday's time trial. It was a bummer, but Phinney was too zonked to be devastated. During his post-race massage, he cried like crazy. On Twitter, Phinney wrote about riding for his Dad and called it "probably the most trying day I've had on a bike." When Phinney's saga was reported on the website VeloNews, cycling fans went crazy. These have been bleak times for the sport, ripped apart by doping scandals. Phinney's solo effort—and his emotions post-race—had stirred something soulful. "Emotion is powerful and undeniably human," Phinney's mother, Connie Carpenter, said in an email from Italy.
Back home in Colorado, Davis Phinney was marveling at the whole story. You can still find Davis on his bike, usually on the fancy carbon-fiber city commuter he got from his son. Cycling remains a sanctuary—"easier than walking, in a sense," he said. But the daily routine remains full of hassles. Davis Phinney keeps a sense of humor about it, jokingly referring to himself as "Turtleboy." He began a foundation to give people living with Parkinson's tools for living well—for achieving little victories.
Davis Phinney said he didn't learn about Taylor's ride until after it was over. Friends told him how inspired they were by his son. When he heard that Taylor had been thinking about him the whole time, he was floored.
"I have almost no words for how amazing it makes me feel," Davis Phinney said. He wrote in an email to his son:
You make me so happy and beyond proud—and that is better than any medicine and can defeat any disease.
The results are wrong. This is not a story about a guy who finished last. Taylor Phinney won that race.
Write to Jason Gay at Jason.Gay@wsj.com

2013 Baehr Challenge Highlights!

April 6, 2013, proved to be a great day. The 4th Annual Baehr Challenge!
Kamrie and friends from Centennial Bel Canto Choir sing a great rendition of the National Anthem
Brian Baehr-Announcing

Grandson Brigden enjoying a snow cone

Knight Transportation's obstacle, a balance bridge. Thanks to Clayton Carr for his building skills1

Carl and McKelle doing the tires. Note little Brigden not far behind.


Go Jordan Go!


There you go Brigden! You can do it!
Doing the  tower!

Kamrie and Spencer doing the army crawl obstacle built by Medtronics. This is who Joey Gregan works for. Joey was getting us all wet. It was a great obstacle.


Jordan is definitely having fun!

The spider web

Brigden doing the spider web

Brigden doing the balance bridge

The balance bridge

Jordan and Carl doing the spiderweb

Jordan and Carl doing the spiderweb

Carl doing the balance bridge

McKelle and Brigden doing the balance bridge

Jordan!

Our team atop the haystack victorious!

Carl and Brigden on the segway

My great family 

Delbert Johnson 1st Annual Charity Golf Tournament

On Wednesday, April 10th, I participated in the Delbert Johnson 1st Annual Charity Golf Tournament, held at Pinnacle Peak Country Club in Scottsdale, AZ. Joey Gregan had invited me to be the guest speaker at the dinner afterwards. My golfing partners were: Brian Baehr, David Pootricull, and Joey Gregan. We had a great time with beautiful weather. I actually hit some pretty nice shots and on the last hole made a beautiful putt for birdie!

While on the course we got to meet Muhammad Ali and his wife. The Muhammad Ali Center was one of the beneficiaries receiving some of the proceeds of the event. They brought him out in a golf cart, his wife in another one. I was able to shake his hand and introduce myself. He didn't say anything but that was all right.  It was awesome to have that experience.

I played probably my best round of golf that day. Afterwards I spoke at the dinner. I was introduced by Margaret-Ann Coles, program director at the Muhammad Ali Center, and gave a short talk on my life with PD. Leisa, Kamrie, Torie, Jacie, and JJ Lemoine were there. It was nice to have that experience. I was able to talk to others who have PD as well as those who don't. One couple, Jeff and Ashley, helped me in the parking lot when I first arrived, and I acknowledged them in my talk, he wants to follow my DBS progression, we exchanged numbers, and I felt like the day was well worth it. Thanks Joey for inviting me to participate.

One of my PD Hero's: Mick "Captain Angel" Beaman

Mick Beaman, friend indeed. Mick came up to the hospital on Thursday afternoon and spent the rest of the day and night with me, allowing Leisa to go get some rest at home. Throughout the night he helped me with whatever I needed and we enjoyed this opportunity. Two PD friends helping each other, sharing a common bond. I am grateful for Mick. He is a great friend!

Saturday, April 20, 2013

My DBS Surgery-My Next Step in the Parkinson's Disease Progression

On April 18, 2013, I underwent the first stage of DBS surgery under that skilled hands of Dr. Francisco Ponce, and his amazing team, including Joey Gregan and Bill of Medtronics. It truly was an amazing experience. I was awake the majority of the time and was able to interact with Dr. Ponce, Joey, Bill, and others. Dr. Ponce said that it went remarkably well, and that he "hit the bullseye!"

Funny experiences: After they completed the right side which was the first side to do, I had the urgency to go to the bathroom. I whispered to Joey," What if I have to pee?", and he said to Dr. Ponce that I had to pee, and Dr. Ponce directed them all to turn their heads giving me a privacy break while the nurse held a urinal bottle to me (which was awkward). I was bashful at first but finally decided it was time to go.  All went well and pretty soon they were  doing the left side!

At the end of the surgery one of the nurses who had made contact with the recovery team to make sure that there was a bed ready, found out that there were no beds available. So in her innocent attempt to hide it from me, she, just like she would do with her child, said "there aren't any b-e-d-s" spelling the word bed, and then realized that I could spell so she realized how funny that sounded. We laughed about that for awhile.


Sunday morning April 21, 2013: Recap of the last few days. Thursday morning I checked in to Banner Good Samaritan Hospital around 6:00. I was off medication per doctors instructions so walking was not good. A wheelchair quickly became my friend, but not a comfortable friend. Leisa was my driver and did a great job. Thank you Leisa for everything! You are an awesome wife!

Also there was my good friend Stew Martz, who also has PD. He has had one side of his brain DBS'd and sometime in the future will have the other. Stew is a great man, always positive. He makes me laugh. More good things to come as we get to know him better. Thanks Stew for being a great friend!

So,after checkin I am taken to pre-op, change into the fashionable hospital gown, and start the typical checkup stuff. Dr. Andrews, the anesthesiologist, comes in and we get to know him. He asks if I am Mormon, and after responding yes, he said, "I can tell". He is LDS (Mormon) too. I am grateful my Mormon light is shining that day. Finally Dr.Ponce comes in and we are about to go to the operating room. I meet the two nurses who will be attending to me, Jillian and Lisa. I am warned that there is going to be alot of people in the room because they are using a new scanning machine that allows them to take all the readings right there rather than having to take me from one room to another. I have prior opted to be awake during the surgery which apparently will help in the process.

I am wheeled into the room and sure enough there are many people there,including Joey Gregan and Bill Valls from Medtronics. 
It is great to see Joey, a good friend.





I was awake for most the procedure. The only time I wasn't was when they put the halo on my head and I don't  remember the scanner. I remember hearing a drill but I don't remember my head being drilled into. Dr. Ponce said later that I had really hard bone which he like. Another way of saying I have a hard head.

During the process there was alot of interaction, conversation, instructions. There seemed to be a big to do about the shower curtain, which was the plastic sheet between my skull and Dr. Ponce. I found out at the end of the surgery that it was being held up by a piece of PVC pipe! Of all things, PVC in an operating room where everything else is metal. Well, I did tell them that I was going to purchase them there first chrome plated shower rod!

The surgery went very well. I was able to respond to his requests fo me to do certain movements. I am glad I did it awake. I was there until about 11:30 or so and then was taken to recovery for awhile. While there, Wayne and Helen Smithson came to visit, as well as Tate Linford. Tate is my cousin and attends Grand Canyon University and plays LaCrosse. He is a great young man and a good friend. Thanks Tate for being there.

Also, Stew Martz, who had been there earlier, came back and visited awhile longer. He left and then came Mick Beaman, who had driven up from Tucson. He had been there awhile but had got some incorrect directions and had become very familiar with the hospital. Both Stew and Mick have PD and are very good friends of mine. 

Eventually I was taken to my room on the 6th floor. Room 634 D Pod. I shared the room with a man by the name of Merrill. He was also LDS. 

Leisa got me settled and made sure that all was well for quite some        time. Mick actually did not see me until I got to the room. Mick was so gracious and encouraged Leisa to take a break, go for a walk, relax, unwind, and let him sit with me for awhile. She did, and then Jacie, Kamrie,and Torie came to visit, bringing me ice cream. We had a fun visit.