Boys of Summer Book - Entry #161

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

100% proceeds go to the Michael J Fox Foundation. 

July 9, 2006 - Bob
Walnut Creek, CA

Some ups, some downs...

We didn’t get the New York Post article as we had hoped. They loved our story, but were looking for something a little more local. Easy enough to understand as we’re on the left coast and all.

The good: the Oprah Winfrey show has expressed interest. I’ve long felt we’d be a perfect fit. The producer who contacted me said they keep projects on file to see if they fit with any of their upcoming shows. There’s no guarantee this does anything but put us into what I’m sure is a very big vault, but hey, it’s Oprah’s big vault. Here’s to hoping.
August 1, 2006 - Mom
Walnut Creek, CA

The difference in therapy now and then, is huge. I feel like I’m on a road -- it’s a good path. Before it was like a report card -- 1/2 hour and goodbye. This is working. Our therapist is working with us, helping us to work directionally.

I came from a place of fear with Kaiser. What I learned at the  clinic (in Seattle) was I don’t need to be afraid. It was having dad with me, that he was learning right along with me, that love and support that he showed was absolutely incredible.

The staff there were just so direct. They made me look at the disease, take responsibility. Giving me the actual tools was just amazing to me. It definitely empowered me. It’s a lifelong process. It’s like having diabetes -- you are never going to get rid of it. But you can manage it by your insulin (medication) and through behavior modification. Here are the tools. Each of us had particular behavior modifications for each of our temperaments, personalities and behaviors. It was specific to each of us -- not generic. I wasn’t categorized. I was dealt with as a PERSON, not a disease.

The spiritual aspect was huge to me. It was an important level to connect to. It wasn’t thrown in my face. It wasn’t fundamental or judgmental. It was comforting, informative and still challenging... but it was in a way that I like. It spoke to me.

 

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.

Boys of Summer Book - Entry #158

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 III

RC:
Is there a prototypical type of Parkinson’s patient (age, sex, race, etc.)?

DS:
Males are a little more likely to be affected by Parkinson’s -- the ratio is about 55% to 45%. There is no ethnic predominence -- it’s seen equally across all races. As far as age, the average age of onset is about 60, 61. About 10-15% of folks are diagnosed before the age of 40 and that would be what we term “Young Onset Parkinson’s Disease.”

RC:
What’s a typical prognosis for a person who is diagnosed with Parkinson’s Disease? What do you tell them?

DS:
First, the most important thing I reinforce with patients is that Parkinson’s is associated with a near normal life span. So we don’t consider Parkinson’s a lethal disease, rather it’s a nuisance that’s part of you every day. It is effectively managed by medication, but the medications do have some downsides associated with them. But it is possible to manage the disease effectively.

RC:
What are some of those downsides?

DS:
There’s a class of medications that are classified dopamine agonist; they tend to make you sleepy. In fact, there are warning labels about driving with that class of medications. There’s been a lot in the news about compulsive behaviors associated with that class of medications. And I think that’s true to some extent. These medications can drive that. sinemet, which is actually the “Gold Standard” of medications for Parkinson’s Disease is leva-dopa which is converted into dopamine, so it really remains the most effective medication we have. Long term use of that is associated with what we call motor fluctuations. Where the medication kind of kicks in and then wears off over a fairly rapid period of time. Sinemet or leva-dopa can also lead something called dyskinesia which is involuntary movements that are a side effect of the medication, rather than the good motor effect that you like to see, you actually see excessive movement.

RC:
Does dyskinesia show up without medication.

DS:
No the dyskinesias really are a side effect of medication.

RC:
What do you know about rasagiline?

DS:
Rasagiline is a drug recently released into the market in the U.S.. It is what we call an M.A.O. inhibitor, so that blocks the breakdown of dopamine. There’s also some suggestion that it may function as an antioxidant and slow progression of Parkinson’s Disease.

RC:
One article we read suggested that it could possibly even turn symptoms around.

DS:
Right and that’s what we mean by neuro-protection or slowing progression and that’s a possibility. The drug is still under research but that is a possibility with that class of medication.

RC:
So there is a good deal of hope with this rasagiline?

DS:
Right.

RC:
What about physical therapy as part of the treatment? How important is it?

DS:
When you talk about treating Parkinson’s, when you come to the doctor, you spend most of the time talking about the different medications. But we also make sure to spend some time talking about what else you could be doing in terms of management. Exercise is very important with Parkinson’s Disease, I tell my patients, “Use it or lose it”. Physical therapy plays a role in that. Physical therapy can help with specific problems. Say you’re having difficulty with your gait, they can teach you strategies to compensate for that. In terms of dealing with certain kinds of rigidity or stiffness they can help with that. The whole goal is all of these strategies sort of feed in together: the medications do part of it, the physical and occupational therapy techniques play a role, exercise plays a role, nutrition plays a role so when you’re seeing people in the clinic you want to be focusing on all those different aspects.

RC:
That seems like a really important message to me. Too many people just take a pill and say, “That’s the answer”, as opposed to it being a part of an integrated system.

DS:
Right.

RC:
What is gene therapy?

DS:
The basic strategy is to use a virus that’s not infectious, so it can’t cause infections. You mutate it, you add the genetic code into that virus code, into it’s own genetics. Then you give somebody an infusion of the virus and then whatever protein you want produced, the virus starts kicking that into gear and increasing that protein.

RC:
So it works like a virus -- my understanding of a virus is that when you get one, it’s always in you. It doesn’t go away. So that’s using something we often negatively associate with, a virus, and making it positive.

DS:
Right. A non-infectious virus. They actually use the common cold virus to do that.

RC:
What do centers like the Muhammad Ali Research Center and others like these need more than anything? What’s your biggest challenge?

DS:
We do a really good job of supporting Parkinson’s locally, within the Phoenix area. What we’d like to see is litlle Muhammad Ali Centers all over the country so that if you’re living in...Ames, Iowa, you still have access to quality Parkinson’s care, where you can get multi-discipline care and you can get someone who really specializes in Parkinson’s Disease. So you don’t have to travel to a major city to get that done.

RC:
Do you have any rough numbers of about how many people are affected by Parkinson’s in  the U.S.?

DS:
The old number is 1.5 million people. It’s probably higher than that now. But nobody’s done and up to date epidemiology study so we really don’t have a handle on that. It’s probably quite a bit higher than 1.5 million.

RC:
The other thing is the number of people who have it and don’t know. What is the average 3-5 years people usually live with it before they’re diagnosed?

DS:
Exactly. Unless you have a very obvious tremor, it can take several years before you’re diagnosed with Parkinson’s Disease. The symptoms start very subtly. Sometimes patients are explained off as a shoulder injury or bunions in your feet or something like that is said to be causing the symptoms. It takes a while before the symptoms are obvious enough that someone can be diagnosed officially.