Saturday, December 06, 2008

Changing gears-- After a long battle with Parkinson's...

For those of you that have read my blog regarding my DBS experience I appreciate your involvement, comments and good wishes. This week I went for a "tune up" one of several I will have over the next year. It is a basic appointment to evaluate the effects of the stimulator as balanced with your current regiment of medications.

Changing gears, although this DBS has been a major event in my life and sharing it with you have been a positive experience for me I no longer want to dwell on it as it is time to move forward. So I am changing gears and the blog will be from this point on a realistic look at life with PD and a voltage induced brain.

"After a long battle with Parkinson's..."
I am a Parkinson's news junkie, I receive Google updates on PD news every 15 minutes in my email box. Lately I have noticed a trend that I find disturbing. When I first became addicted it was because my appetite to learn everything I could about this un-chosen partner in my life was veracious. Then as Ann and I began to develop Focus on a Cure I felt compelled to stay informed on the latest clinical studies, breakthroughs and controversies to be a better resource for those who look to Focus on a Cure for support. The headlines used to read like salesman's handbook of power words; NEW, EXCITING, BREAKTHROUGH, PRIMARY END POINT REACHED, PERSON... WITH PARKINSON"S ACCOMPLISHES....

If you frequent certain circles in the PD community you still hear of these exciting moments and news you hear of is positive. Lately I have been discouraged by the Google alerts headlines I have been receiving most no start like this (insert a name here) After a long battle with Parkinson's...

First let me say I have the deepest sympathy and respect for those that have fought the good fight against PD or any other disease and have left this world still fighting and it is because of these people who after a long battle with Parkinson's have lost the fight and gone to rest that we must continue to be vigilant in our efforts to do everything we can so this battle can be won!

10 years ago many headlines read " After a long battle with Breast Cancer..." and that fight was vigorously fought and today though they may have not won the war but they sure have won some major battles. There are more women and men today who start their stories or headlines with "I am a ___Year cancer survivor" What a wonderful word SURVIVOR.

Survivor is defined as:

  • a person who continues to function or prosper in spite of opposition,hardship, or setbacks
  • one who lives through affliction
  • one who outlives another
  • an animal that survives in spite of adversity

Too many stories that discuss Parkinson's or people with Parkinson's whether they are accomplishing great things or they have been recognized for a good deed are refered to as "sufferers" I for one have always stood by my statement "I do NOT suffer from Parkinson's I live with it." Just recently there was a article in People magazine about Michael J. Fox and several times during the article the author used the statement "suffering from Parkinson's" now I have followed Michael's life with Parkinson's and have had the good fortune to meet him on several occasions and have a conversation with him about this. I can tell you first hand this is a man who does not suffer from Parkinson's he lives with it, he fights it, he challenges it he makes Parkinson's fight to stay in his life, but I can assure you he does not suffer from it. Michael J Fox is the most recognizable face of Parkinson's and a great example of how we should try to live as I described above of how he faces Parkinson's every day.

Suffer or Suffering is defined as:

  • to tolerate or allow; to undergo a penalty, as of death;
  • to sustain injury, disadvantage, or loss;
  • To appear at a disadvantage;
  • an unfortunate person who suffers from some adverse circumstance

So now go back a re-read the definition of Survivor and look at how Sufferer is defined and every night you lay your head down BELIEVE you have not suffered but you have SURVIVED to fight another day!

Stay Focused,



278-005 said...

Thanks for your blogging. I am scheduled for experimental DBS for depression later this month. I started a blog at

I truly appreciate your willingness to talk about it. Not to minimize your experience but the population as a whole sympathizes with people with Parkinson's. When I've talked to even close relatives, depression is something you "get over" and they don't understand the pain. I've elected to only let a very few close people know that I am considering brain surgery for my depression. The stigma is too much. I really hope it works for me and gives me the courage to talk freely about it.

Anyway - thanks for your insights. I'll ask more questions when I meet with my surgeon on Wednesday.


Dave said...

Thanks so much for blogging your whole DBS experience thus far. You don't know me, but my brother, Dan, is a good college friend of your brother, Bob. I guess the 4 of us share a lot in common.

I have been seeing Dr. Verhagen since 2001 and have finally decided to let them drill! February 9 is the big day...sometimes I am anxious to get it done, and at times I wonder if this is the right thing to do. But, I have made my decision based on the faith I have in you and others who share their experiences and more importantly, faith in God to guide the whole event.

My blog is entitled "Without Hope...what is left?" I just started on T'giving day morning.