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.

Boys of Summer Book - Entry #156

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

100% proceeds go to the Michael J Fox Foundation. 

Interview Dr. Shill
Dr. Shill

RC:
Why did you decide to come here to the Muhammad Ali Parkinson’s Research Center?

DS:
A couple of reasons, one is I’m from here, so there’s some family loyalty there. And the other, major reason, is that I was interested in managing Parkinson’s and I thought they did a really quality job here.

RC:
What got you interested in Parkinson’s?

DS:
I think it was the aspects of movement disorders in general, that you could really lay your hands on it. You can see a tremor, you can feel rigidity in a limb, you can really get a sense of how the movement disorder affects the person just by looking at them, just by talking and interacting with them. That was really appealing to me to really get my hands around it and understand it.

RC:
So it’s a more tangible disease than some others?

DS:
Right. I think the physical manifestations of Parkinson’s are often very easy for people to see and I think that was appealing to me in helping me understand it better.

RC:
What are some of the common symptoms of Parkinson’s?

DS:
One of the first things people associate is shaky hands or a tremor. 75% of people with Parkinson’s Disease will have some degree of tremor. And that’s one of the first manifestations in quite a few folks. Some of the other symptoms associated with Parkinson’s are problems related to slowness of movement, small, cramped handwriting, a softening of the voice, maybe dragging a leg when you walk or shuffling your feet -- those types of symptoms.

RC:
Are there any symptoms that maybe people are less aware of that are also in the Parkinson’s camp, so to speak?

DS:
I think one thing that’s part of Parkinson’s that some people don’t understand is some of the cognitive issues; there’s a slowness of thinking, so sometimes it’s hard to get words out. People will have the impression that someone has a lessened IQ because of that and obviously that isn’t true. There’s an impression that maybe the person isn’t “all there” but really it’s just a slowness of thinking that is causing the physical symptoms or really what you see. Pain is a symptom of Parkinson’s in about 30% of people and I don’t think people appreciate that. Some of the stiffness in the arms and legs can lead to some discomfort.

RC:
I’ve heard some Parkinsonians talk about the problem that they are perceived as being drunk because of some of the loss of motor skill and such.

DS:
Right. I’ve certainly had some of my patients who were driving and were pulled over, maybe they’re swerving just a little bit. We actually give people cards that say “I am not intoxicated, I have Parkinson’s Disease.” And they carry that in their wallets.

RC:
That’s great -- can’t let too many people know about that, might be a scapegoat. How does the nervous system function normally -- in a person who’s not afflicted by any sort of brain disorder?

DS:
I’m not exactly sure what you’re getting at, but I’ll try to answer it. When you start to move, there’s a signal that goes from the brain to the muscles. Normally that happens very rapidly -- within 10 or 20 milliseconds. With Parkinson’s Disease, that impulse is slowed. You think about doing something but by the time it’s reached the muscles it’s slowed down. There’s a slowness in initiation of the movement and a slowness in completing it. That’s particularly true for very coordinated movements. Things like handwriting, speech, walking, things that require a coordinated muscle activity, those are the things that are preferentially affected by Parkinson’s Disease.

Boys of Summer Book - Entry #117

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

100% proceeds go to the Michael J Fox Foundation. 

January 6, 2006 - Bob

Las Vegas, NV

Though I appreciate Dr. Sawchuck’s concern, I am put off by one of his comments, in particular: 

“Based on what is known about Parkinson's disease (and we certainly don't know everything but do know quite a bit)...”

That statement is logically bankrupt. How can one claim to know any quantitative amount of a thing while at the same time acknowledging he doesn’t know everything? It’s akin to the six blind men touching different parts of the elephant and each  missing the fact that what they’re touching is part of the same thing.

I understand only being able to speak knowledgeably about what one knows. But don’t shit on what you don’t know just because you don’t know.

January 7, 2005 - Dad 

Walnut Creek, CA

After attempts to reach the PRP without success I joined an online PRP support group through which I found a practitioner trained by PRP, Lori Gilbert located in Sacramento, CA. I had a conversation with Lori to explain my circumstance. After some discussion and initial resistance she agreed that if I was completely off my medication for at least 10 weeks she would be willing to meet me and evaluate the possibility of treatment. I continued to suffer the effects of coming off Mirapex.

The portrayal that I have seen in the movies of addicts going through withdrawal is accurate. The movie that comes to mind is The French Connection II. Popeye Doyle was in France and the bad guys held him hostage and injected him with heroine over a period of time. Then they left him and he went through the withdrawal/recovery experience.

There is no position of comfort. I felt extremely anxious, like I would jump out of my skin if I could. There was a deep body ache like a bad case of flu. It is very hard to concentrate on anything but the pain. There is also a feeling of claustrophobia which I think goes along with anxiety. Quite different from what Dr Sawchuk predicted.

Boys of Summer Book - Entry #116

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

100% proceeds go to the Michael J Fox Foundation. 

December 31, 2004 - BOB

Las Vegas, NV

Mike is making significant progress with the film. He hopes to have a two-hour cut to show me by next week. He's very hopeful and excited about his process. I am too!

The first rough cut (for the festivals consideration ONLY) should be together by mid-February. That leaves me with a main target of Seattle’s Film Festival. I’ve heard a lot of good things about this festival and we have a tremendous amount of support up there. 

There is a lot of work to do between now and then. 

January 5, 2005 - Dad

Walnut Creek, CA

I wrote Dr. Sawchuk to explain my intention (of getting off of the Parkinson’s medications I am currently on so that I can begin the Parkinson Recovery Project) and ask his advice. 

This was his response:

I have briefly reviewed the techniques proposed. I have not seen any published literature on the results of the techniques.  

Based on what is known about Parkinson's disease (and we certainly don't know everything but do know quite a bit) I do not see how these therapies have any chance of "curing" Parkinson's disease. They might make you feel better for a short while.

  

Additionally I am concerned that you might be worse off overall coming off of medication. It seems that they offer no expectation of how much or when any benefit of their treatment will occur. I am concerned that you will spend a lot of money, be worse off while you are off of the medications, and end up no different in the end. I say this without malice or smugness and wish someone could come up with a curative treatment. Hope is not always reality though.

However, to come off of medications, I would taper the Mirapex to 1 mg 3 times per day for 3-5 days, then 0.5 mg 3 times per day for 3-5 days, then discontinue it. If you only have 1.5 mg pills, I can prescribe 0.5 mg pills for the taper. Since you didn't give me your medical record number I can't check or prescribe anything.”

I had already begun cutting back on my medication and by now was at half my previous dosage. At times I felt like scenes from movies about drug addiction. I was very anxious, unable to find a position of comfort and had great difficulty sleeping.

Boys of Summer Book - Entry #115

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

100% proceeds go to the Michael J Fox Foundation. 

December 1, 2004 - Bob

Las Vegas, NV

I got an official notice from Sundance today that though they appreciated the opportunity to watch my film, “Boys of Summer” it did not make the final cut for their film festival. That’s odd, seeing as how I NEVER SENT THEM A TAPE. 

I got this same form rejection from Sundance last year when I actually did submit, “Luckey Quarter”. So, this begs the question: how does one know that anyone is actually even watching these films at all if you get the same rejection slip whether you sent them a tape or not?

What is that smell?

December 23, 2004 - Dad

Walnut Creek, CA

I received an e-mail from Bob with some web sites describing alternative approaches to treating PD. One of the sites was for the Parkinson Recovery Project (PRP). I found out from the PRP web site that their approach combined Yin Tui Na and acupuncture. They also had a warning that they could not accept anyone for treatment who was on or had been on anti-Parkinson medication.

What was most interesting about their program was the concept of recovery form PD. My neurologist assured me that there is no cure for PD. He says there is only more and stronger medication and, eventually, deep brain surgery.