Pramipexole is a non-ergot dopamine agonist that has been used to treat Parkinson's for several years now. Researchers are now studying whether or not this drug has neuroprotective properties and if it could possibly be used to help treat depression in PD.
Before we get into the latest research I want to define what a 'non-ergot' vs. ergot dopamine agonist is. A dopamine agonist is a compound that binds directly to dopamine receptors in the brain and can help relieve symptoms of Parkinson's Disease. An ergot compound is one that is derived from the ergot fungus, while a non-ergot compound is not. Many of the older dopamine agonist drugs were ergot dopamine agonists and they have now been associated with an increased risk for valvular heart disease because of their ability to act on serotonin (5-HT) receptors within the heart. The non-ergot dopamine agonists are not associated with this risk and tend to be used more prevalently today. (Note: Do not start or stop taking any medications without talking to your doctor. The author of this blog is not a doctor and is not offering medical advice.)
Pramipexole has been used to treat the general symptoms of Parkinson's for several years. That fact is not what interested me in this drug though.
The fascinating part to me is that researchers are now testing if this drug has neuroprotective abilities which could thereby slow the clinical progression of Parkinson's. Obviously that would be wonderful news for the PD community. There is currently a study called PROUD (http://www.medicalnewstoday.com/articles/119308.php) taking place in the UK that is examining this question of neuroprotection using pramipexole. I will be watching for the results from this study.
Other research into pramipexole's uses that intrigues me is the study of whether or not pramipexole is able to help treat depression in Parkinson's. Since depression is estimated in 40-60% of PD patients and about 50% of these patients do not respond to the usual anti-depressants, news of a dopamine agonist having a positive effect in this area would be great. Researchers are studying the effect on depression by pramipexole alone and also as adjunctive therapy along with another anti-depressant. I am particularly interested in depression in Parkinson's as research seems to note that people with PD and depression have a lesser quality of life than those that remain more optimistic.
Disclaimer: I felt I needed to add an additional disclaimer to this post. I am not a doctor or a scientist and am not offering medical advice in this blog. I am merely offering up information that can be used by the PD community in the hopes of helping others. Please consult your doctor about any medical treatment questions you have.
Friday, August 29, 2008
Thursday, August 28, 2008
Parkinson's Disease and Brain Prosthetics?"
Could “brain prosthetics” be the futuristic fix for Parkinson’s Disease. Given the fact that Deep Brain Stimulation already uses neural implants hooked up to a type of pacemaker, I say Why Not?
US News and World Report recently had an article about neuroengineers and some neuroengineering work at MIT that could potentially be applied to treat Parkinson’s Disease. (I have to say that I find it fascinating that a discipline such as neuroengineering even exists. Just think if you’d heard about this type of work 20 years ago and what you would have thought.) The article talked about research into robotic exoskeletons, better prosthetic arms and legs, and the most interesting to me, the development of a “tiny LED light switch” that could be implanted into the brain to treat patients with conditions such as Parkinson’s or blindness. The idea is to use this tiny device as a “stoplight, turning neurons on and off in a thousandth of a second.”
Obviously this type of research having real life applications is a little ways off, but I have no doubt that we will see these ideas and therapies becoming realities in the next 10 years. I highly recommend reading this short article. It won’t take you more than 5 minutes.
http://www.usnews.com/articles/science/medical-science/2008/07/24/will-upgrades-enhance-our-bodies.html
US News and World Report recently had an article about neuroengineers and some neuroengineering work at MIT that could potentially be applied to treat Parkinson’s Disease. (I have to say that I find it fascinating that a discipline such as neuroengineering even exists. Just think if you’d heard about this type of work 20 years ago and what you would have thought.) The article talked about research into robotic exoskeletons, better prosthetic arms and legs, and the most interesting to me, the development of a “tiny LED light switch” that could be implanted into the brain to treat patients with conditions such as Parkinson’s or blindness. The idea is to use this tiny device as a “stoplight, turning neurons on and off in a thousandth of a second.”
Obviously this type of research having real life applications is a little ways off, but I have no doubt that we will see these ideas and therapies becoming realities in the next 10 years. I highly recommend reading this short article. It won’t take you more than 5 minutes.
http://www.usnews.com/articles/science/medical-science/2008/07/24/will-upgrades-enhance-our-bodies.html
Wednesday, August 27, 2008
Azilect and Parkinson's
What is Azilect? Azilect is a PD drug made by Teva Pharmaceutical Industries, Ltd. It is Teva's version of a rasagiline compound. It is classified as a monoamine oxidase-B (MAO-B) inhibitor and it is touted as a drug that may slow down the progression of early stage Parkinson's. Now you may ask, "What the heck is monoamine oxidase-B and what does it have to do with PD?" And here is the answer.
Monoamine oxidase is an enzyme that comes in 2 forms, MAO-A and MAO-B. MAO-B is far more prevalent in the body and is responsible for the breakdown of dopamine in the synapses in your brain. Essentially, dopamine is secreted from neurons into the synapse (space between neurons). The dopamine is then picked up by dopamine receptors on other "receiving" neurons. In patients with PD the amount of dopamine released into the synapses is significantly decreased as the number of dopamine-releasing neurons is drastically reduced. MAO-B is the enzyme responsible for burning up "extra" dopamine in the synapses.
Azilect works by inhibiting the production of MAO-B in the brain. By decreasing the amount of MAO-B in the synapses the rate that dopamine is burned, or metabolized, is reduced. This reduction allows for more dopamine to remain in the synapses longer and to then bind to the dopamine receptors on other neurons. The overall effect is to increase the amount of "effective" dopamine in the brain. By increasing the amount of dopamine that binds to neurons the PD symptoms are lessened.
Azilect is currently being widely touted as a drug that may slow the progression of Parkinson's Disease. Researchers are also suggesting that this may be a good drug to use in early PD before symptoms become too debilitating without medication. Now, I researched this topic on the Internet extensively and I have seen both sides of this issue discussed. Some researchers are of the mind that this drug will truly slow the progression of the disease. Others are of the opinion that it is another possible drug in the arsenal for movement disorder specialists, but that slowing the progression is over stating the drug's potential. I am not a doctor or a medical scientist so I will not weigh in on my thoughts on this debate. I do think that it is great that researchers are looking for ways to slow the progression significantly.
If you want more information about Azilect here are several websites that I found useful. Of course always discuss any medications with your doctor.
http://www.azilect.com/
http://www.drugs.com/azilect.html
Monoamine oxidase is an enzyme that comes in 2 forms, MAO-A and MAO-B. MAO-B is far more prevalent in the body and is responsible for the breakdown of dopamine in the synapses in your brain. Essentially, dopamine is secreted from neurons into the synapse (space between neurons). The dopamine is then picked up by dopamine receptors on other "receiving" neurons. In patients with PD the amount of dopamine released into the synapses is significantly decreased as the number of dopamine-releasing neurons is drastically reduced. MAO-B is the enzyme responsible for burning up "extra" dopamine in the synapses.
Azilect works by inhibiting the production of MAO-B in the brain. By decreasing the amount of MAO-B in the synapses the rate that dopamine is burned, or metabolized, is reduced. This reduction allows for more dopamine to remain in the synapses longer and to then bind to the dopamine receptors on other neurons. The overall effect is to increase the amount of "effective" dopamine in the brain. By increasing the amount of dopamine that binds to neurons the PD symptoms are lessened.
Azilect is currently being widely touted as a drug that may slow the progression of Parkinson's Disease. Researchers are also suggesting that this may be a good drug to use in early PD before symptoms become too debilitating without medication. Now, I researched this topic on the Internet extensively and I have seen both sides of this issue discussed. Some researchers are of the mind that this drug will truly slow the progression of the disease. Others are of the opinion that it is another possible drug in the arsenal for movement disorder specialists, but that slowing the progression is over stating the drug's potential. I am not a doctor or a medical scientist so I will not weigh in on my thoughts on this debate. I do think that it is great that researchers are looking for ways to slow the progression significantly.
If you want more information about Azilect here are several websites that I found useful. Of course always discuss any medications with your doctor.
http://www.azilect.com/
http://www.drugs.com/azilect.html
Tuesday, August 26, 2008
10 Mountains 10 Years
So Parkinson's Disease or Alzheimer's Disease has touched your life in some way and possibly turned it upsidedown. Hundreds of questions race through your mind. Why me? What does this mean to my life or the life of a loved one? What can I do about it? I'm sure that these questions are asked by most people that deal with these types of diseases personally.
Here is the story of a group of people called 'The Regulars' (because they are regular people like you and me) who have launched a campaign to climb 10 Mountains in 10 Years. They are working to raise money and awareness for both Parkinson's Disease and Alzheimer's Disease.
The founder of the group, Enzo Simone, has been involved with several charities for numerous years. He started this particular quest because his mother has Alzheimer's and his father-in-law has Parkinson's. He is not willing to sit back and let these diseases win.
The group is now in its third year and they climbed their 3rd mountain in July, Mt. Hood in Oregon. These intrepid mountain climbers come from all walks of life. Some have mountain climbing experience, some don't. One member even has Young Onset PD.
Here is the video of their Mt. Hood expedition on YouTube. It's quite amazing what 'Regular' people can accomplish. http://www.youtube.com/watch?v=Shj5adqMKo8
To learn more about their story and their quest for a cure please take a look at the group's Myspace page- http://www.myspace.com/10mountains10years -or visit their blog- http://10mountains10years.blogspot.com. If you want to join them in their adventure please reach out through their MySpace page. I know all who wish to help conquer these diseases are welcome.
As Enzo would say, "World Up!"
Here is the story of a group of people called 'The Regulars' (because they are regular people like you and me) who have launched a campaign to climb 10 Mountains in 10 Years. They are working to raise money and awareness for both Parkinson's Disease and Alzheimer's Disease.
The founder of the group, Enzo Simone, has been involved with several charities for numerous years. He started this particular quest because his mother has Alzheimer's and his father-in-law has Parkinson's. He is not willing to sit back and let these diseases win.
The group is now in its third year and they climbed their 3rd mountain in July, Mt. Hood in Oregon. These intrepid mountain climbers come from all walks of life. Some have mountain climbing experience, some don't. One member even has Young Onset PD.
Here is the video of their Mt. Hood expedition on YouTube. It's quite amazing what 'Regular' people can accomplish. http://www.youtube.com/watch?v=Shj5adqMKo8
To learn more about their story and their quest for a cure please take a look at the group's Myspace page- http://www.myspace.com/10mountains10years -or visit their blog- http://10mountains10years.blogspot.com. If you want to join them in their adventure please reach out through their MySpace page. I know all who wish to help conquer these diseases are welcome.
As Enzo would say, "World Up!"
Monday, August 25, 2008
How Do You Know you have Parkinson's Disease?
The most common question that people seem to ask is, "How do I know that I have Parkinson's Disease?" I'm going to try to answer that to the best of my ability.
First, there is no clinical test available to diagnosis PD. A true, definite diagnosis can only be confirmed by an autopsy. Rather than a clinical test doctors rely on the presence of several symptoms and ruling out other possible causes.
Generally the diagnosis is made on the presence of at least 2 of the following symptoms: Tremor, Muscle Rigidity, and Slow Movement (Bradykinesia). Several other tests (MRI, CT Scan, etc.) are sometimes conducted to rule out other possible causes. The diagnosis should be made by a neurologist, not a general practitioner, and it is often recommended that a second opinion be sought, preferably by a movement disorder specialist. Due to the lack of a definitive test there are a decent number of misdiagnoses.
Part of the diagnosis can also be to watch how the symptoms progress over time and also to see if the patient responds to Parkinson's medications.
If you think you may have PD, but are not sure, here are a couple of websites that might help you understand the disease and its symptoms in more detailed.
http://michaeljfox.org/living_aboutParkinsons_parkinsons101.cfm
http://www.wemove.org/par/par_dia.html
http://www.neurologychannel.com/parkinsonsdisease/symptoms.shtml
The best advice is probably to consult with a good specialist in your area.
First, there is no clinical test available to diagnosis PD. A true, definite diagnosis can only be confirmed by an autopsy. Rather than a clinical test doctors rely on the presence of several symptoms and ruling out other possible causes.
Generally the diagnosis is made on the presence of at least 2 of the following symptoms: Tremor, Muscle Rigidity, and Slow Movement (Bradykinesia). Several other tests (MRI, CT Scan, etc.) are sometimes conducted to rule out other possible causes. The diagnosis should be made by a neurologist, not a general practitioner, and it is often recommended that a second opinion be sought, preferably by a movement disorder specialist. Due to the lack of a definitive test there are a decent number of misdiagnoses.
Part of the diagnosis can also be to watch how the symptoms progress over time and also to see if the patient responds to Parkinson's medications.
If you think you may have PD, but are not sure, here are a couple of websites that might help you understand the disease and its symptoms in more detailed.
http://michaeljfox.org/living_aboutParkinsons_parkinsons101.cfm
http://www.wemove.org/par/par_dia.html
http://www.neurologychannel.com/parkinsonsdisease/symptoms.shtml
The best advice is probably to consult with a good specialist in your area.
Friday, August 22, 2008
Let's Hear it for Plastic!
Whoever thought that having plastic put in your brain could help your health??? Sounds completely ridiculous doesn't it? Even sounds kind of scary at first blush.
But... that is exactly what some researchers are working on in order to help Parkinson's patients and other disease sufferers too.
Here's the gist of what is going on in terms of Parkinson's Disease. Scientists already have neuronal implants that are currently used for Deep Brain Stimulation in some Parkinson's patients. What's Deep Brain Stimulation?? Essentially tiny electrodes are placed in the brain and hooked up to a "pacemaker" that then can stimulate the brain, in a regulated way, to release more dopamine. This procedure is generally done in an effort to minimize the symptoms in fairly advanced cases. I do not know any scientific studies about the exact effectiveness of this treatment (I'm sure they exist and I have not found them yet), but the anecdotal evidence I have read is quite amazing. People that have been quite incapacitated often seem to have a significant reduction in symptoms after this type of treatment. Since there is still no cure for PD no treatment works forever.
Now you're asking... "Exactly how the heck does plastic come into the picture?" And here's the answer... Researchers are creating polymers (strings of plastic molecules in this instance) that are infused with neurotrophins. What's a neurotrophin you ask? Neurotrophins are proteins that allow neurons to grow and survive. Think of them like food at a neuronal level. Researchers are coating the neuronal implants with these neurotrophin-infused polymers.
The idea is to have the polymers release the neurotrophins in a steady dose over time. The aim is to have the actual neurons grow and connect with the implants both because of the neurotrophins and because the plastic coatings on the implants provide a scaffold-like structure for the neurons to grow onto.
Because the plastic coatings encourage the neurons to grow into the implants they may allow for smaller implants to be developed and implanted. It may also make them more effective as the neurons interact with them more directly and possibly in a more complex way.
Researchers are working to have the implants release neurotrophins for up to 90 days after implantation in the brain. It takes approximately 3 months (90 days) for nerves in the body to heal after surgery so releasing the neurotrophins for 3 months may greatly improve the chances for the neurons to grow with the implants and make the implants more effective.
Now how cool is that? Who would ever think that plastic could be used in such an ingenious way?
For more information please see this article. http://www.physorg.com/news138526436.html
But... that is exactly what some researchers are working on in order to help Parkinson's patients and other disease sufferers too.
Here's the gist of what is going on in terms of Parkinson's Disease. Scientists already have neuronal implants that are currently used for Deep Brain Stimulation in some Parkinson's patients. What's Deep Brain Stimulation?? Essentially tiny electrodes are placed in the brain and hooked up to a "pacemaker" that then can stimulate the brain, in a regulated way, to release more dopamine. This procedure is generally done in an effort to minimize the symptoms in fairly advanced cases. I do not know any scientific studies about the exact effectiveness of this treatment (I'm sure they exist and I have not found them yet), but the anecdotal evidence I have read is quite amazing. People that have been quite incapacitated often seem to have a significant reduction in symptoms after this type of treatment. Since there is still no cure for PD no treatment works forever.
Now you're asking... "Exactly how the heck does plastic come into the picture?" And here's the answer... Researchers are creating polymers (strings of plastic molecules in this instance) that are infused with neurotrophins. What's a neurotrophin you ask? Neurotrophins are proteins that allow neurons to grow and survive. Think of them like food at a neuronal level. Researchers are coating the neuronal implants with these neurotrophin-infused polymers.
The idea is to have the polymers release the neurotrophins in a steady dose over time. The aim is to have the actual neurons grow and connect with the implants both because of the neurotrophins and because the plastic coatings on the implants provide a scaffold-like structure for the neurons to grow onto.
Because the plastic coatings encourage the neurons to grow into the implants they may allow for smaller implants to be developed and implanted. It may also make them more effective as the neurons interact with them more directly and possibly in a more complex way.
Researchers are working to have the implants release neurotrophins for up to 90 days after implantation in the brain. It takes approximately 3 months (90 days) for nerves in the body to heal after surgery so releasing the neurotrophins for 3 months may greatly improve the chances for the neurons to grow with the implants and make the implants more effective.
Now how cool is that? Who would ever think that plastic could be used in such an ingenious way?
For more information please see this article. http://www.physorg.com/news138526436.html
Thursday, August 21, 2008
Pancakes for Parkinson's
Since I joined Team Fox (the volunteer fundraising arm of the Michael J. Fox Foundation) I have been amazed at what people can do to help find a cure. One of the fundraising efforts that has truly astounded me is Pancakes for Parkinson's. This fundraising group was started at the University of Virginia by an undergraduate student, Mary McNaught. Mary started this annual fundraiser because her Grandma suffers from Parkinson's. She wanted to do something to help find a cure and better treatments.
Since it's inception in 2004 the annual fundraiser has grown into a full fledge movement with an entire team working to raise money for this cause. Mary McNaught was even on the Rachael Ray show. How is that for some national publicity?
Pancakes for Parkinson's in now held annually at the University of Virginia. Please see their website for more details. http://www.pancakesforparkinsons.org/index.html
This year for the first time Pancakes branched out to other university- Harvard University in Cambridge, MA. Three students from Harvard held their first Pancakes for Parkinson's event on May 3, 2008 and raised over $5000! Here is their Team Fox page if you are interested in learning more about their efforts or in donating. http://www.teamfox.org/siteapps/personalpage/ShowPage.aspx?c=mqITL0PHJtH&b=3944179&sid=9qLGIXNHKhISK3PEIrH
Needless to say, I am astounded at the hard work of college students and their community spirit. I think it takes a special person to donate so much time to organize a fundraising event while still keeping up with your classes and studying.
Best of Luck to all of them and keep on serving those Pancakes!
Since it's inception in 2004 the annual fundraiser has grown into a full fledge movement with an entire team working to raise money for this cause. Mary McNaught was even on the Rachael Ray show. How is that for some national publicity?
Pancakes for Parkinson's in now held annually at the University of Virginia. Please see their website for more details. http://www.pancakesforparkinsons.org/index.html
This year for the first time Pancakes branched out to other university- Harvard University in Cambridge, MA. Three students from Harvard held their first Pancakes for Parkinson's event on May 3, 2008 and raised over $5000! Here is their Team Fox page if you are interested in learning more about their efforts or in donating. http://www.teamfox.org/siteapps/personalpage/ShowPage.aspx?c=mqITL0PHJtH&b=3944179&sid=9qLGIXNHKhISK3PEIrH
Needless to say, I am astounded at the hard work of college students and their community spirit. I think it takes a special person to donate so much time to organize a fundraising event while still keeping up with your classes and studying.
Best of Luck to all of them and keep on serving those Pancakes!
Wednesday, August 20, 2008
Gene Therapy
There are always new treatments for Parkinson's being researched. One of the most intriguing approaches to me is gene therapy. The idea of gene therapy is to use a carrier molecule, called a vector, to insert a gene into a patient's targeted cells. This newly inserted gene then helps to create the functions that are needed in the patient's cells. For a good overview of gene therapy please visit the following website. http://www.ornl.gov/sci/techresources/Human_Genome/medicine/genetherapy.shtml#whatis
One biotechnology company, Neurologix Inc, has just been granted permission to begin a Phase II study of a gene therapy protocol to treat advanced Parkinson's Disease. Their approach is a non-dopamingeric approach to reestablishing motor function. Non-dopaminergic means that the company is not replacing dopamine in the patient's brain or working directly to increase the amount of dopamine available to the patient.
Neurologix's approach is to increase the amount of GABA (another neurotransmitter) in the patient's brain. GABA is generally known as an inhibitory neurotransmitter, meaning that it's affect in the brain is to reduce the amount that neurons fire. Dopamine loss in Parkinson's patients results in a reduced amount of GABA being released as it is dopamine in the affected area of the brain that triggers the release of GABA. The reduction in GABA in turn causes neurons to fire more frequently than normal as the inhibitory GABA is not as plentiful. The increase in neuronal firing causes motor coordination issues in Parkinson's patients. By increasing the amount of GABA in the brain directly the hope is to decrease the neuronal firing thereby decreasing the amount of motor issues. If this approach is successful it will mean that there will be another potential therapy for people with advanced Parkinson's who are no longer responding to dopamine replacement therapy.
Of course another positive to this study being successful will be gene therapy progressing to a point where it is effective in helping to treat such a complicated disease as Parkinson's.
To read more about this study please visit this website.
http://www.earthtimes.org/articles/show/neurologix-initiates-recruitment-for-phase-2-parkinsons-disease-trial,509688.shtml
One biotechnology company, Neurologix Inc, has just been granted permission to begin a Phase II study of a gene therapy protocol to treat advanced Parkinson's Disease. Their approach is a non-dopamingeric approach to reestablishing motor function. Non-dopaminergic means that the company is not replacing dopamine in the patient's brain or working directly to increase the amount of dopamine available to the patient.
Neurologix's approach is to increase the amount of GABA (another neurotransmitter) in the patient's brain. GABA is generally known as an inhibitory neurotransmitter, meaning that it's affect in the brain is to reduce the amount that neurons fire. Dopamine loss in Parkinson's patients results in a reduced amount of GABA being released as it is dopamine in the affected area of the brain that triggers the release of GABA. The reduction in GABA in turn causes neurons to fire more frequently than normal as the inhibitory GABA is not as plentiful. The increase in neuronal firing causes motor coordination issues in Parkinson's patients. By increasing the amount of GABA in the brain directly the hope is to decrease the neuronal firing thereby decreasing the amount of motor issues. If this approach is successful it will mean that there will be another potential therapy for people with advanced Parkinson's who are no longer responding to dopamine replacement therapy.
Of course another positive to this study being successful will be gene therapy progressing to a point where it is effective in helping to treat such a complicated disease as Parkinson's.
To read more about this study please visit this website.
http://www.earthtimes.org/articles/show/neurologix-initiates-recruitment-for-phase-2-parkinsons-disease-trial,509688.shtml
Tuesday, August 19, 2008
Focus on a Cure Foundation for Parkinson's
The Focus on a Cure Foundation for Parkinson's (http://www.focusonacure.com/) is a charity with a mission- to cure Parkinson's Disease. I have met the Foundation's founders, Ann and Ken Glowienke, and am impressed with their hard work and determination. Ann was kind enough to allow me to interview her about the Foundation and its goals. Here is the interview.
Q: Why did you start Focus on a Cure?
A: After Ken was diagnosed at age 38 with Young Onset Parkinson’s disease, we were both very devastated and unsure what our future would hold. I immediately started researching what Parkinson’s was and what I could do to help Ken. I came across the Michael J. Fox Foundation. They were just about to launch their grass-roots fundraising opportunity called Team Fox, so I jumped at the chance to join. Shortly there after I started to organize our first event, and when all plans were set I finally shared it with Ken. He was surprised and very excited.
Q: What type of events does the Foundation hold?
A: We have held 3 main events. Our first 2 events were held at a neighborhood park district. Our first year we had about 35 family and friends attend. Our second year we had a little over a 100. This past May 2008 we held a “Picnic in the PARKinson’s” at the Morton Arboretum. We had over 360 people come from 5 surrounding states. We also hold Poinsettias for Parkinson’s around the holidays. We have a website that we communicate our current and upcoming events on. http://www.focusonacure.org/ We also have a mailing list as well as e-mail communication.
Q: How did you decide on the name Focus on a Cure?
A: After I told Ken about Team Fox, we decided to come up with a name. I came up with Keep your eye on a Cure. Ken has always loved eagles and they represent who he is and his vision in life. We decided that Focus on a Cure was the perfect name to describe our goals.
Q: How much have you raised to date to help find a cure for Parkinson's Disease?
A: To date we have raised over $40,000.
Q: How can anyone that is interested in assisting Focus on a Cure with its mission to cure Parkinson's Disease help?
A: Anyone interested in making a donation can mail it to:
Focus on a Cure
PO Box 933
Oswego, IL 60543
In the near future secure online donations will also be available. Anyone who is interested in volunteering can contacts us. (info@focusonacure.com)
Check our website for upcoming events, as we always have something in the works.
Q: What challenges have you faced in starting this foundation and in raising money and awareness for a cure?
A: The most difficult part of fundraising is getting the word out there and finding
sponsors. Since we started we have now become our own 501(c) (3) foundation, The Focus on a Cure Foundation for Parkinson’s. We felt this was the next step to help us achieve our goals and also allow corporate sponsors to get involved.
Q: What, if anything, have you learned from this experience?
A: This has truly been one of the greatest experiences of my life. I decided from day one that we were not going to sit back and let Parkinson’s take over our life. I knew we could make a difference in our lives and the lives of others. Starting the Focus on a Cure Foundation for Parkinson’s has given us the opportunity to raise awareness and funds for Parkinson’s disease. We will continue our efforts until the day they find a cure.
If you are interested in helping Ann and Ken Glowienke with the Focus on a Cure Foundation for Parkinson's please visit their website at http://www.focusonacure.com/. (They are currently building a new website http://www.focusonacure.org/ which will be online shortly.)
Q: Why did you start Focus on a Cure?
A: After Ken was diagnosed at age 38 with Young Onset Parkinson’s disease, we were both very devastated and unsure what our future would hold. I immediately started researching what Parkinson’s was and what I could do to help Ken. I came across the Michael J. Fox Foundation. They were just about to launch their grass-roots fundraising opportunity called Team Fox, so I jumped at the chance to join. Shortly there after I started to organize our first event, and when all plans were set I finally shared it with Ken. He was surprised and very excited.
Q: What type of events does the Foundation hold?
A: We have held 3 main events. Our first 2 events were held at a neighborhood park district. Our first year we had about 35 family and friends attend. Our second year we had a little over a 100. This past May 2008 we held a “Picnic in the PARKinson’s” at the Morton Arboretum. We had over 360 people come from 5 surrounding states. We also hold Poinsettias for Parkinson’s around the holidays. We have a website that we communicate our current and upcoming events on. http://www.focusonacure.org/ We also have a mailing list as well as e-mail communication.
Q: How did you decide on the name Focus on a Cure?
A: After I told Ken about Team Fox, we decided to come up with a name. I came up with Keep your eye on a Cure. Ken has always loved eagles and they represent who he is and his vision in life. We decided that Focus on a Cure was the perfect name to describe our goals.
Q: How much have you raised to date to help find a cure for Parkinson's Disease?
A: To date we have raised over $40,000.
Q: How can anyone that is interested in assisting Focus on a Cure with its mission to cure Parkinson's Disease help?
A: Anyone interested in making a donation can mail it to:
Focus on a Cure
PO Box 933
Oswego, IL 60543
In the near future secure online donations will also be available. Anyone who is interested in volunteering can contacts us. (info@focusonacure.com)
Check our website for upcoming events, as we always have something in the works.
Q: What challenges have you faced in starting this foundation and in raising money and awareness for a cure?
A: The most difficult part of fundraising is getting the word out there and finding
sponsors. Since we started we have now become our own 501(c) (3) foundation, The Focus on a Cure Foundation for Parkinson’s. We felt this was the next step to help us achieve our goals and also allow corporate sponsors to get involved.
Q: What, if anything, have you learned from this experience?
A: This has truly been one of the greatest experiences of my life. I decided from day one that we were not going to sit back and let Parkinson’s take over our life. I knew we could make a difference in our lives and the lives of others. Starting the Focus on a Cure Foundation for Parkinson’s has given us the opportunity to raise awareness and funds for Parkinson’s disease. We will continue our efforts until the day they find a cure.
If you are interested in helping Ann and Ken Glowienke with the Focus on a Cure Foundation for Parkinson's please visit their website at http://www.focusonacure.com/. (They are currently building a new website http://www.focusonacure.org/ which will be online shortly.)
Monday, August 18, 2008
Parkinson's and Tai Chi
My Mom has been going to Tai Chi classes for the past 3 years or so. I have yet to read any truly definitive studies on whether tai chi helps Parkinson's patients or not, but I don't see how it could hurt. Since one of the goals in Tai Chi is to improve balance I see this exercise as a great way to help her (and others) maintain their balance as long as possible.
I know that my Mom's neurologist, a Parkinson's specialist at Columbia Presbyterian Hospital, believes the Tai Chi is helpful even if it is not proven.
Because of my Mom's experiences I have read lots of articles and blogs on the Internet about PD and how Tai Chi may help. One of the sites that I found most interesting is http://www.worldtaichiday.org/. The site is about Tai Chi and Qigong meditation in general, but this particular page is about Tai Chi and Parkinson's in particular. http://www.worldtaichiday.org/LIBRARYArticles/LIBRARYTaiChiPARKINSONS.html.
I recommend taking a look at this article. It has a lot of interesting information and links to other sites.
Read on and stay balanced!
I know that my Mom's neurologist, a Parkinson's specialist at Columbia Presbyterian Hospital, believes the Tai Chi is helpful even if it is not proven.
Because of my Mom's experiences I have read lots of articles and blogs on the Internet about PD and how Tai Chi may help. One of the sites that I found most interesting is http://www.worldtaichiday.org/. The site is about Tai Chi and Qigong meditation in general, but this particular page is about Tai Chi and Parkinson's in particular. http://www.worldtaichiday.org/LIBRARYArticles/LIBRARYTaiChiPARKINSONS.html.
I recommend taking a look at this article. It has a lot of interesting information and links to other sites.
Read on and stay balanced!
Thursday, August 7, 2008
Possible Diagnostic Tests?
There is no known way to definitively diagnose Parkinson's while the patient is living. Instead doctors must rely on observing the symptoms and progression of those symptoms. Finding a method to diagnose Parkinson's early would greatly help with developing a cure, better treatments and maybe even a way to slow or stop the disease early on.
I am fascinated by the numerous different approaches that researchers are taking to search for an early diagnostic tool. The methods range from brain scans, to genetic mutations, to assessing a person's sense of smell. I am hopeful that an early diagnostic tool will be found, if for no other reason than to help people with early symptoms know if they truly have Parkinson's or not. It took 10 years to diagnosis my mom properly and I think that is way too long.
One of the methods that has received a lot of press lately is using spectroscopy (http://wiki.answers.com/Q/What_is_the_basic_principle_of_ir_spectroscopy) as a way to analyze a patient's blood and look for a "chemical signature" or biomarkers for the disease. Here is one of the numerous articles I have read on this subject. http://www.upi.com/Health_News/2008/08/06/Test_for_Parkinsons_being_developed/UPI-28711218039021/
Another method that I find intriguing is to assess a person's sense of smell. Loss of smell is one of the symptoms of Parkinson's and it will be interesting to see if assessing this sense in people is a reliable method for detecting such a major disease. It seems that non-Parkinson's people can identify 35-40 smells correctly while Parkinson's patients can identify only 20 or less smells correctly. It would be amazing if assessing something so basic, and that we all take for granted, is the key to an early diagnosis. Here is a recent article on this topic.
http://www.news4jax.com/news/17107808/detail.html
One of my hopes is that by finding a tool for early diagnosis we can also develop methods to protect the brain and the remaining dopaminergic neurons so that the disease does not progress or at least progresses at a much slower rate.
I am fascinated by the numerous different approaches that researchers are taking to search for an early diagnostic tool. The methods range from brain scans, to genetic mutations, to assessing a person's sense of smell. I am hopeful that an early diagnostic tool will be found, if for no other reason than to help people with early symptoms know if they truly have Parkinson's or not. It took 10 years to diagnosis my mom properly and I think that is way too long.
One of the methods that has received a lot of press lately is using spectroscopy (http://wiki.answers.com/Q/What_is_the_basic_principle_of_ir_spectroscopy) as a way to analyze a patient's blood and look for a "chemical signature" or biomarkers for the disease. Here is one of the numerous articles I have read on this subject. http://www.upi.com/Health_News/2008/08/06/Test_for_Parkinsons_being_developed/UPI-28711218039021/
Another method that I find intriguing is to assess a person's sense of smell. Loss of smell is one of the symptoms of Parkinson's and it will be interesting to see if assessing this sense in people is a reliable method for detecting such a major disease. It seems that non-Parkinson's people can identify 35-40 smells correctly while Parkinson's patients can identify only 20 or less smells correctly. It would be amazing if assessing something so basic, and that we all take for granted, is the key to an early diagnosis. Here is a recent article on this topic.
http://www.news4jax.com/news/17107808/detail.html
One of my hopes is that by finding a tool for early diagnosis we can also develop methods to protect the brain and the remaining dopaminergic neurons so that the disease does not progress or at least progresses at a much slower rate.
Wednesday, August 6, 2008
Extraordinary People That Inspire Hope
I debated today about whether to blog about an article I came across online today in the New York Times. It is this amazing audio/video about 7 individuals living with Parkinson's Disease and what they are doing to offer hope for themselves and others. It does not discuss anything directly about a cure or about better treatments, but I thought it was inspirational.
All 7 of these people live each day with Parkinson's which can be physically, mentally and emotionally difficult. Each one of them has found a unique way to move forward and offer hope. I completely believe that your outlook is 80% of life and my hat is off to each of these people for what they are accomplishing and for so publically sharing their stories.
People like this inspire me to continue to fight for a cure each and every day!
Here is the link to the "article".
http://www.nytimes.com/interactive/2008/08/05/health/healthguide/TE_PARKINSONS.html#
All 7 of these people live each day with Parkinson's which can be physically, mentally and emotionally difficult. Each one of them has found a unique way to move forward and offer hope. I completely believe that your outlook is 80% of life and my hat is off to each of these people for what they are accomplishing and for so publically sharing their stories.
People like this inspire me to continue to fight for a cure each and every day!
Here is the link to the "article".
http://www.nytimes.com/interactive/2008/08/05/health/healthguide/TE_PARKINSONS.html#
Tuesday, August 5, 2008
How Do I Help Find a Cure?
Do you have Parkinson's Disease or does someone close to you have PD? Do you want to do more to help find a cure? Then this is the post for you!
My Mom has PD and broke her hip in a fall last September. I was finally tired of sitting on the sidelines so I decided to help find a cure by joining Team Fox, the volunteer fundraising arm of the Michael J. Fox Foundation for Parkinson's Disease. (http://www.michaeljfox.org/) Deciding to help fight back was one of the best decisions I ever made. I know that the cure is out there and we just have to find it. The people I have met through Team Fox have been amazing and are truly an inspiration.
For anyone else that is interested in helping to find a cure here are several resources that can help you on your way.
1. Team Fox- http://www.teamfox.org/- Join a team that is working to make a difference in the lives of people living today with Parkinson's.
2. Focus on a Cure- http://www.focusonacure.com/- This charity is run by Ann and Ken Glowienke and raises money to fund research and ultimately a cure.
3. Parkinson's Unity Walk- http://www.unitywalk.org/- This walk is held each year in April in Center Park in NYC. I attended last year and was amazed at the turn out.
4. American Parkinson Disease Association- http://www.apdaparkinson.org/- This organization helps to organize Walk-a-Thons all over the country. Visit the site to see if a walk-a-thon is scheduled near you or for help in starting your own.
5. Hope For a Cure- http://www.hopeforacure.org/- Visit this site to learn about ways Hope For a Cure is working to find a cure.
6. National Parkinson's Foundation- http://www.parkinson.org/- You can donate to the NPF to help fund research
7. Parkinson's Disease Foundation- http://www.pdf.org/- Another private foundation working to find a cure
You can also always work to raise awareness of this disease by talking about it and letting people know how difficult it can be to live with or watch someone you love with PD. The more people realize that this disease is not just a small inconvenience or only affects a few people the more we can do to help find a cure and stop people from suffering needlessly from Parkinson's.
Good luck whatever you chose!
Karen
PS- Please send me any other links to organizations that you believe are useful in our journey to a cure.
My Mom has PD and broke her hip in a fall last September. I was finally tired of sitting on the sidelines so I decided to help find a cure by joining Team Fox, the volunteer fundraising arm of the Michael J. Fox Foundation for Parkinson's Disease. (http://www.michaeljfox.org/) Deciding to help fight back was one of the best decisions I ever made. I know that the cure is out there and we just have to find it. The people I have met through Team Fox have been amazing and are truly an inspiration.
For anyone else that is interested in helping to find a cure here are several resources that can help you on your way.
1. Team Fox- http://www.teamfox.org/- Join a team that is working to make a difference in the lives of people living today with Parkinson's.
2. Focus on a Cure- http://www.focusonacure.com/- This charity is run by Ann and Ken Glowienke and raises money to fund research and ultimately a cure.
3. Parkinson's Unity Walk- http://www.unitywalk.org/- This walk is held each year in April in Center Park in NYC. I attended last year and was amazed at the turn out.
4. American Parkinson Disease Association- http://www.apdaparkinson.org/- This organization helps to organize Walk-a-Thons all over the country. Visit the site to see if a walk-a-thon is scheduled near you or for help in starting your own.
5. Hope For a Cure- http://www.hopeforacure.org/- Visit this site to learn about ways Hope For a Cure is working to find a cure.
6. National Parkinson's Foundation- http://www.parkinson.org/- You can donate to the NPF to help fund research
7. Parkinson's Disease Foundation- http://www.pdf.org/- Another private foundation working to find a cure
You can also always work to raise awareness of this disease by talking about it and letting people know how difficult it can be to live with or watch someone you love with PD. The more people realize that this disease is not just a small inconvenience or only affects a few people the more we can do to help find a cure and stop people from suffering needlessly from Parkinson's.
Good luck whatever you chose!
Karen
PS- Please send me any other links to organizations that you believe are useful in our journey to a cure.
Monday, August 4, 2008
Cognitive Symptoms
Most of the discussion on Parkinson's deals with the motor symptoms. These symptoms are the easier to recognize and usually respond to dopamine agonists (replacements). There are, however, many cognitive symptoms as well. Some (but not all) of the cognitive symptoms are: memory loss, depression and dementia. These symptoms are not discussed as much, are definitely harder to research on the Internet and seem to be more poorly understood in general. Unfortuntately many of these symptoms do not respond to dopamine and need different intervention.
The research on the cognitive aspects seems much more limited to me and the research varies widely on the frequency of cognitive issues, their possible causes and their treatments. It is an area of the disease that truly needs more attention and research as these symptoms have direct effects on the quality of life for the PD patient and their families.
Here is one useful webpage that I ran across while researching this topic.
http://www.waparkinsons.org/edu_research/articles/Cognitive_Changes.html
The research on the cognitive aspects seems much more limited to me and the research varies widely on the frequency of cognitive issues, their possible causes and their treatments. It is an area of the disease that truly needs more attention and research as these symptoms have direct effects on the quality of life for the PD patient and their families.
Here is one useful webpage that I ran across while researching this topic.
http://www.waparkinsons.org/edu_research/articles/Cognitive_Changes.html
Friday, August 1, 2008
Speech Therapy
I was at the Parkinson's Unity Walk (http://www.unitywalk.org/) with my parents back in April when a woman suddenly stopped my parents and began talking to them about Speech issues and Parkinson's. She was telling them about a type of speech therapy directed especially for Parkinson's. My Mom does not experience any major issues with her voice, but I found listening to this woman fascinating. I had no idea that someone had developed a special speech therapy program geared largely towards Parkinson's. The name of the therapy is the Lee Silverman Voice Treatment (LSVT) and the website is http://www.lsvt.org/.
The woman asked my Mom about her voice and she told her that she didn't have any problems. The woman asked what she had done for a profession and my Mom told her she was a teacher. The woman said, "And that's why you don't have problems. " It seems that teachers and actors often don't experience voice problems because they are used to projecting their voices.
I thought this was fascinating and could see how a treatment could be developed if certain professions didn't experience these issues. Obviously figuring out why would help others.
My family does not personally deal with voice difficulties (at least not yet), but I have talked to other families whose loved ones have lost their voices completely. I can't imagine how trapped someone must feel in their own bodies if they have no voice and especially if they have a tremor that limits their writing abilities.
Here again is the link to this special speech therapy http://www.lsvt.org/ and also a link to another informational site I found while researching this issue. http://www.fortunecity.com/meltingpot/farley/817/aspeech.html
Best of luck and keep on talking!
The woman asked my Mom about her voice and she told her that she didn't have any problems. The woman asked what she had done for a profession and my Mom told her she was a teacher. The woman said, "And that's why you don't have problems. " It seems that teachers and actors often don't experience voice problems because they are used to projecting their voices.
I thought this was fascinating and could see how a treatment could be developed if certain professions didn't experience these issues. Obviously figuring out why would help others.
My family does not personally deal with voice difficulties (at least not yet), but I have talked to other families whose loved ones have lost their voices completely. I can't imagine how trapped someone must feel in their own bodies if they have no voice and especially if they have a tremor that limits their writing abilities.
Here again is the link to this special speech therapy http://www.lsvt.org/ and also a link to another informational site I found while researching this issue. http://www.fortunecity.com/meltingpot/farley/817/aspeech.html
Best of luck and keep on talking!
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