At 9 pm on April 18th, 2009, Charles D. Peebler passed away peacefully with his family around him. He lived by this motto all the way until the end,
"Life is life, fight for it!"
On this page you will find his health updates that were sent out during his courageous battle with PSP.
A letter from one of Charles D. Peebler, Jr.'s doctors when asked what he can expect in the future:
"...I can provide some sort of estimate for you. Your symptoms began in early 2003. A PSP Rating Scale score of 22 two years later is average for PSP, as the average patient worsens by 10 to 12 points per year. Therefore, we might expect the overall course of your illness to progress at the average rate going forward. If that occurs, it means that:
- One year from now, you would probably require assistance to walk.
- Two years from now you would have clear difficulty swallowing food or drink safely.
- Six years from now, you would require a wheelchair and would have difficulty speaking.
- The chance of surviving more than eight years from now be less than 50%
Keep in mind that all of these figures are rough and are based on the meager presently available treatment for PSP. There may be considerable improvements thereupon in the next few years in the present rate of scientific discovery continues."
Response from Charles D. Peebler, Jr.:
"Thank you for your letter of March 4th. It made me stop and think ... about PSP ... my situation ... raising money for research, etc.
To begin with, your letter was a real "shocker" for me! I had anticipated that you would hold out hope that I would beat the averages. The first thing I want you to know is that I'm a fighter. I'm at my best when my back is against the wall. Resilience is a trademark of main! If I'm to progress at a normal rate (I've never considered myself normal of average), I believe we need to be more aggressive with my treatment.
Now I don't want to be critical; however, I get the feeling that more is being done gathering and analyzing clinical data than in providing treatments and hope. I'm searching for hope, so is every other patient in my opinion, as well as their family, friends, and potential contributors to PSP research! Hope, I've come to believe, is as vital to our lives as the very oxygen we breathe. If I were to believe that I couldn't exert any level of control over my circumstances, I would have already lost the game! I understand that you have to continue to concentrate on understanding the nature of PSP - but, by the same token, everyone connected with PSP has to find ways to better understand the connections between emotions and how the brain and body biologically talk to each other. This may be harder to accomplish than it would appear, since from you or any physician to effectively impart real hope, you have to believe yourself.
In that regard, I have two thoughts: 1) doctors are fallible, in particular in the language they use, and 2) each disease and each case of each disease is uncertain in its outcome, and within that uncertainty, we can find hope! The disease and the brain cells affected have not read a textbook or research paper, and treatment can have an unexpectedly dramatic impact. This is the great paradox of true hope because nothing is absolutely determined. There are more reasons for hope than fear! So we must find ways to bridle fear and give greater rein to hope. We all must believe that science will progress and in time new therapies will make PSP curable! Therefore, I want to know, in your opinion, what current treatments seem to hold the most promise. Are they in this country? Are they in Europe? I need to go where there is hope! I'm willing to be used as a test case!
Like many other people searching for hope, I'm looking more than ever to my faith. I have found strength and solace in the tradition and structures of retreat. This combined with daily medication ... there is deep comfort in the sense that we are not alone when we try to pass out the shadow of death (see the 23 Psalm). I'm going to be talking to Richard Zyne about developing a 10-year plan which concludes with a cure. We need a timetable with dollars indicated so that we can sell hope as we seek to raise money! As you can tell, I see hope at the very heart of healing. For those of us who have hope, it may help us live longer. An if it doesn't, it will certainly help us to live a better life!"
All my best.
Charles D. Peebler, Jr.
3/10/2009 - Note from the Peebler Family (.PDF)