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.

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