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.
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.
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