AARP: Hello and welcome to today's chat!
We're glad to have with us today two experts from the Michael J. Fox Foundation for Parkinson's Research.
Joining us is Dr. Maurizio Facheris, M.D., M.S, associate director of research programs, and Brian Fiske, vice president of research programs.
Maurizio Facheris: Hello, thank you for inviting Brian and myself to chat with the AARP Facebook community.
Brian Fiske: Hello, I'm excited to join you today. Thanks for having us.
AARP: Ok, let's start with the first question.
Comment From Jim: What age does Parkinson's usually start to show?
Facheris: Thanks for your question, Jim. Most commonly Parkinson's starts in the late 50s. About less than 10 percent of cases occur earlier in life.
Comment From Alice: How can I tell the difference between Parkinson's and just shaky hands?
Comment From David: What are the first signs of Parkinson’s and what tests are done to know if you have it?
Facheris: These are similar questions, so we wanted to share them both with our audience.
Starting with David's question first, the first signs of Parkinson's are rigidity, slowness of movement and tremor.
But, not everyone with Parkinson's develops a tremor. To Alice's question, tremor can be associated with other conditions.
The only way to test this today is through clinical evaluations by a neurologist or movement disorder specialist.
Brian Fiske: Maurizio raises a great point; this is one of the greatest challenges to diagnosing Parkinson's today. It can take years to accurately diagnose Parkinson's in some patients, especially in the very young or within the first five years.
This is why the foundation has made it a priority to identify a biomarker of Parkinson's disease.
For those not familiar with the term "biomarker," it is a marker of disease progression. For instance, cholesterol levels are biomakers of vascular disorders.
PPMI is our clinical study to identify a biomarker of Parkinson's; it stands for the Parkinson's Progression Markers Initiative.
Comment From David: Is there any new research on early detection?
Facheris: There is a lot of research looking at potential symptoms that could be detected before the movement problems occur.
Some symptoms like loss of sense of smell, constipation, and certain sleep problems and disorders seem to be early predictors of Parkinson's disease.
Comment From Mary K: If my mother had Parkinson’s, what's the chance I'll get it?
Fiske: Thanks for asking, Mary; this is an important question.
About 10 to 20 percent of people with Parkinson's report a family history of Parkinson's, but we can only associate less than 10 percent of cases with a specific gene that might cause PD.
There is some evidence that people with a parent or sibling with Parkinson's may be at an increased risk. However there is no clear genetic test for most cases of Parkinson's.
In some cases, like in certain ethnic groups and in young onset cases of Parkinson's, genetic testing has been suggested. But we do not have clear genetic links to the vast majority of Parkinson's disease cases.
Comment From Élan: Are there any known alternative medicines or treatments that are effective for PD?
Facheris: Currently we can treat the motor symptoms of Parkinson's with drugs that replace lost dopamine in the brain. Dopamine is the brain chemical most affected in Parkinson's.
Over time and with continued use, the efficacy of these drugs diminishes over time and can cause side effects.
Eventually some individuals can be candidates for surgical therapies, such as deep brain stimulation and intestinal delivery of levodopa.
There are some alternative ways people with Parkinson's can improve their symptoms.
For example, exercise is always good. It's important that you do something that you enjoy and will stick with.
A complete diet is important, but timing meals and medication can sometimes help alleviate complications.
Comment From Robert: What are the prospects of a treatment beyond what is available today?
Fiske: The drug development pipeline for Parkinson's disease has never been better. There are a lot of treatments in development that are looking to improve how we can deliver dopamine. We're also looking at other brain chemicals that might be able to impact the symptoms of Parkinson's, such as glutamate.
We're also pushing hard on drugs that could treat some of the nonmotor symptoms of Parkinson's, things like cognitive impairment, swallowing problems and constipation.
Although genetics only explains a small number of cases, the genetics of Parkinson's is also pointing us to drug targets that could potentially benefit all patients by altering the actual disease course. For example, LRRK2 and alpha-synuclein are two gene targets that many companies are developing therapies against.
Comment From Guest: Do you believe that Parkinson's and dystonia are related? I do suffer from dystonia; so far in my voice and in my hand. I've had it for years
Facheris: Some people with Parkinson's do suffer dystonia as a symptom. But dystonia can also be an independent disorder.
This is the reason it is so important to visit with a neurologist with movement disorders training or specialty who can distinguish between these two conditions.
Comment From Sandy: My husband, 73, suffers from Lewy Body Dementia. Are the symptoms of Lewy Body Dementia often confused with Parkinson's disease, or are they the same?
Facheris: Thanks for sharing, Sandy. This is a great but complex question.
Lewy Body Dementia tends to manifest very quickly after the diagnosis of Parkinson's, whereas cognitive impairment in Parkinson's occurs later in the disease progression and has different features.
Fiske: It sounds confusing and it is. Even the FDA is confused. This is why today we're hosting a meeting with the FDA in Washington, D.C., to better define cognitive issues in Parkinson's disease.
Comment From Michael: What would you say is the biggest obstacle to obtaining a cure?
Fiske: One of the biggest challenges is the time and money it takes to develop even a single new drug for a complex disease like Parkinson's.
Estimates suggest it may take 15 years and a billion dollars. But that is why foundations like ours are pushing so hard to accelerate this process. For example: reducing the duplication of efforts, encouraging collaboration, reducing risk and providing common research tools that everyone can use.
Facheris: On top of this, another major obstacle is the challenges in testing promising drugs in the clinic. Believe it or not, one of the biggest obstacles is finding people willing to participate in clinical trials.
Eighty-five percent of clinical trials are delayed and 30 percent of Parkinson's clinical trials never launch due to lack of clinical trial volunteers.
That's why the foundation and partners have created a clinical trial matching tool to speed the drug development process.
Fox Trial Finder is similar to a dating site, except that it matches you to clinical trials recruiting in your area.
You can create a profile and learn more at: www.foxtrialfinder.org
AARP: OK, I think that will be our last question. We've gotten so many great questions. Any final statements, gentlemen?
Facheris: We agree, this has been a great Q&A. We wish we could have answered more questions. For additional information, please visit our website at www.michaeljfox.org.
Fiske: I agree with Maurizio, thank you for your time.
AARP: Thank you for joining our chat today!