Boys of Summer Book - Entry #160

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

June 30, 2006 - Bob

Walnut Creek, CA

Mom and dad have enrolled in a program in Seattle for them both to get more understanding about her bipolar. I’m so proud that mom’s brave enough to go to it and through it. I also admire my dad for standing by her to encourage, support and sometimes offer the bits of information my mom’s disease would rather leave in the dark. There is that odd distinction that I’ve come to accept with chronic diseases like Parkinson’s and bipolar: they are both part of us and separate from us. When we “have” them or are afflicted by them, they do become part of us. They can, in fact, overtake us and become us. We must fight daily, hourly, minute-by-minute to manage them.

Therein lies the rub: “manage” not “cure”. Some things, at least as far anyone I know understands them right now, are not curable. That’s a very contradictory thought for a people and a culture here in the U.S., in particular, that often believes it can accomplish anything, cure everything and defeat anyone.

Diseases like these are like a full plate of humility served cold. Victory, in the classic sense (i.e. annihilation, surrender) is not an option. Management is the only thing on the table.

Diseases thrive in dark, stagnant areas devoid of life, light and circulation. In the light, where they must be dealt with and where those with experience, training and compassion can help is where we can all learn to manage our difficulties, whatever they are.

It’s scary, exposing one’s self to the light. What will people think about me? What does this say about who I think I am and how I present myself? What if no one loves me? What if I am weak? What if I am worthless? What if I am a fake, a fraud, a fool?

I look forward to seeing my parents and sharing this new segment of their adventure with them.

Boys of Summer Book - Entry #159

You can see the complete film "Boys of Summer" for free by clicking here. 

100% proceeds go to the Michael J Fox Foundation. 

Interview with Dr. Shill at the Muhammad Ali Parkinson's Research Center

part IV

RC:
Can the disease be handled more effectively if a patient is diagnosed sooner than later?

DS:
Right now we don’t have true neuro-protective drugs. We still desperately need that. The advantage to getting diagnosed early would be most important if we had good neuro-protective strategies that could actually slow or stop progression. That being said, I think there is an importance to getting diagnosed early to reduce the patient’s worry. People struggle for a long time before they reach their diagnosis, wondering what they have and what can be causing the symptoms, going from doctor to doctor until they finally get a correct diagnosis. So I think there is an importance in early diagnosis. There’s been some thought that even the drugs that are currently available may work in some fashion to slow the progression of Parkinson’s Disease. There may be a rationale to starting therapy very early in people, even with the very first sign of symptoms.

RC:
What, based on what you hear from talking to patients, is the scariest thing about Parkinson’s Disease?

DS:
Progression. Worrying about the future. All my patients I talk to say, “If I can just stay the way I am, I can deal with this. This is the devil I know and I can cope with it.” What they worry about is two years from now or five years from now or 10 years from now, where are they going to be?

RC:
And that’s a real unknown because it’s different in different patients, right?

DS:
Right. I heard one of my senior colleagues say, “You’ve seen one Parkinson’s patient, you’ve seen one Parkinson’s patient,” which basically means that everyone’s different. Everyone progresses differently, everyone has different pattern of symptoms, so everyone really is a unique individual with Parkinson’s.

RC:
So it sounds like, while many people, yourself included appear hopeful about what has been learned -- particularly over the last 20 years since Parkinson’s has really come on the scene --

DS:
I would agree, yes.

RC:
-- that there still seems to be kind of a, “the more we get to know, the more unknown there is.” In other words, there’s a lot to be known still about Parkinson’s.

DS:
Right. So we get one battle fought and won -- say, that we can manage early Parkinson’s very effectively, but how do we keep it from progressing and how do we deal with the symptoms that we still don’t deal really well with?

RC:
What do you tell Parkinson’s patients who just tell you they’re scared?

DS:
It’s okay. It’s okay to be scared.

RC:
And if they’re here at this center, do you tell them they’re in a good place?

DS:
Yes, I always talk to my patients like we’re a team in this together. I’m on their side and we’re going to fight when different symptoms crop up, we’ll deal with them. Our whole goal is just to keep Parkinson’s a minor nuissance in your life so that you’re still going about doing the things you love.

RC:
So it really is management?

DS:
Right. Maintaining quality of life and management of symptoms.

RC:
The human element seems to play a really big part  in that. You seem to have a really strong human element to balance your clinical nature. I’m guessing patients notice that and it makes a difference to them.

DS:
I hope so. A good  physician should be part of the therapy. They should be part of the hope and encouragement that you’re going to do well.

RC:
Is it as simple sometimes as making a little human contact, say putting your hand on their shoulder --

DS:
Absolutely. I would suspect a good portion of my patients have been hugged.