May 20 Overview of “in home” exercise programs – Dan Spangler will be reminding us of
familiar programs available and new ones. Remember exercise is the key.
June 17 Deep Brain Stimulation Roundtable – A panel of our Support Group members will share their experiences and answer questions regarding their DBS surgeries.
March Meeting
Dr. Vance Van Drake had to cancel his speaking engagement with us due to illness. We will be making arrangements to reschedule him for a later date. This provided us an opportunity to work our brains once again with puzzles and games brought to us by Dan Spangler.
Old faces were combined with new faces, and we took the challenge of trying new games. Everyone seemed to enjoy the refreshments and had a good time.
A Note from Dan Spangler
Good news! Thanks to Marijo Sliger and her colleagues at Parkview Hospital, we are making progress getting the word out to nurses and staff that people with Parkinson’s need to be better understood when they are admitted to the hospital for another unrelated matter. Our medications may need to be given more frequently or at different times than the hospital’s normal routine might specify. Sometimes hospitals won’t allow Parkinson’s meds to be brought from home. Our behaviors may be misunderstood (tremors, stiffness, drooling, speech, balance, etc.). Many times hospital staff does not even know that a patient has Parkinson’s.
FWPSG has prepared, and presented a report outlining our concerns. Two events are taking place as a result. (1) Important points are being taken from the report and will be presented to hospital staff via a nurse’s newsletter. (2) I have the privilege of addressing a large group of nurses and other staff members on May 20, 2010, in which I will further present our concerns.
I need your help! If you have been in the hospital and had an unpleasant Parkinson’s experience after being admitted for an unrelated mater, please contact me. I would like to use your personal examples and share them with the Parkview staff. Your identity will not be revealed. Thank you!
Editor’s note: This is your opportunity to support (that is what we’re all here for) another person with Parkinson’s disease. The future hospital stays will be a better experience because of your contribution. Pick up the phone and call Dan now.
Spring, spring come now here,
I'll pick your sweetest flowers
Bouquet of colors!
– Peter S. Quinn
Walking with someone can be better than using a walker. Hold on to the arm of someone else while walking. You might want to say, “Left, right, left, right, left, right.” This can help you concentrate on your movements. Your physical therapist can help determine when using a walker is safer.
Ask first, “Would you like help?” Never grab an arm or try to help a person without permission. Let the PWP tell you how to help her/him. Remember, you are supplying balance control not physical support. Don't try to pull the person along or lift them.
If the PWP wears bifocals, he may need extra help when using stairs. Going down stairs is often more difficult than walking up. When we go upstairs, we usually look through the top of our glasses lens (the long-distance part), and when we go down we usually look through the near-distance (or reading part) of the lens. When we look down our feet are not close enough for our eyes to focus on through the reading part. This is why God invented handrails! Whether going up or down be very careful. Take one step at a time if you need to.
If you use a cane, and you must go out in icy weather, screw a removable ice gripper tip into the bottom of your cane, or use a ski pole or Nordic walking pole when walking on icy sidewalks.
New Directions in Parkinson's Treatments
taken from the Young Parkinson's Newsletter winter 2010
Current drugs for Parkinson's treat the symptoms but do not stop the progression of the disease. While there is no cure for PD to date, what follows is a review of some promising new drugs that could change the way Parkinson's disease is treated.
Continuous Dopaminergic Stimulation
The standard oral medication for handling motor fluctuations in PD is levodopa. However, for some people, levodopa's beneficial effects wear off before the next dose of medication is due. Infusion therapies may offer people with PD an alternative, when oral medications are no longer effective. This type of treatment aims to provide a more continuous stimulation of the brain receptors for dopamine.
Infusion therapies/DUOPDOPA
There is a new technology in which Duodopa, a concentrated gel-form of levodopa/carbidopa, is pumped through a small tube into the duodenum so it goes into the bowel on a continuous basis. One advantage of this style of medication delivery is that "you can formulate the exact dose, at certain times of the day, in a much more precise way than when using oral preparations; so you can adjust the dose by 1 mg rather than in 50 mg steps," says Dr. Mark Guttman, Director of the Centre for Movement Disorders in Markham, Ontario.
Duodopa therapy does have some drawbacks: it requires a surgical procedure which could lead to complications, the pump and tubing could be subject to technical problems, it requires careful monitoring and nursing support, and some people find it burdensome to carry a pump at all times. It's a complicated way of giving a medication..." says Dr. Anthony Lang, Director of the Morton & Gloria Shulman Movement Disorder Centre at Toronto Western Hospital "it's better suited to people who are taking levodopa many times a day and have bad, and often unpredictable, motor fluctuations." Guttman notes, "It could be seen as an option for people who are considering deep brain stimulation (DBS) surgery but either don't qualify for DBS or don't want to take the risks.
Although Duodopa is not yet available in the United States, it is coming. Last year, Solvay Pharmaceuticals, Inc. announced that the U.S. Food and Drug Administration (FDA) had granted Fast Track designation to the development program for levodopa/carbidopa intestinal gel. Once a drug receives Fast Track designation, early and frequent communication between the FDA and the drug company is encouraged throughout the entire drug development and review process. The frequency of communication assures that questions and issues are resolved quickly, often leading to earlier drug approval and access by patients.
Enhancing the Effect of Dopamine
A new monoamine oxidose B inhibitor
Monoamine oxidose B inhibitors (MAO-B compounds) enhance the effect of dopamine by preventing its breakdown. International phase III clinical trials are underway for a new investigative drug to determine its effectiveness and safety as an add-on dose to either levodopa or dopamine agonist medications.
Looking Ahead
Dr. Jonathan Brotchie, senior scientist at the Toronto Western Research Institute, highlights three promising drugs that are currently being studied and that could change Parkinson's treatment:
Fipamezole
Fipamezole is a drug which, when taken with dopamine medication, appears to do two things: reduce the problem of dyskinesia and increase the time the dopamine medication works. “I think this could change the way we treat Parkinson's inn a relatively short time," says Brotchie.
BllB014
The experimental drug BllB014 is one of the first non-dopamine approaches to treating PD. 'It reverses a different chemical imbalance in the brain than our current therapies," says Brotchie. "Because it is non-dopaminergic, we anticipate that it won't have the same side effects as current dopamine therapy."
Preliminary studies have shown that BllB014 can successfully do two things: One, alleviate Parkinson's symptoms, when given on its own. "That's probably the first time we've had a drug which isn't replacing dopamine that can do that," says Brotchie. Two, it appears that, when added to existing therapies, BllB013 can improve the action of those therapies, decreasing the "off time between the action of each pill. "This means that you either have to take fewer tablets every day or each tablet works longer.
Prm50028/Cogane
"Cogane has potential to restore the dopamine system in the brain, not just provide symptomatic benefit,' says Brotchie.
Glial cell-derived neurotrophic factor (GDNF) is a protein made in the brain. It helps brain cells grow when the brain is developing or recovering from injury. For the past decade, scientists have been exploring ways to increase the levels of GDNF in the Parkinson's brain to help cells survive or even grow back. Previous approaches have involved injecting GDNF into the brain through surgery or gene therapy. Gogane offers the possibility of delivering GDNF to the brain via a pill, thereby switching on the brain's ability to make GDNF.
Noting that the animal data and early human data on safety and dosage look promising, Brotchie says, "I think Cogane offers the best hope today for a drug what could actually reverse the disease. And if you could reverse the disease early enough, you could change its impact on your life. Parkinson's would then be something that you could be diagnosed with but, if you received the drug early enough, and if the drug lives up to its promise, you could imagine that it might start to reverse symptoms and even reverse the disease process."
adapted from e-Parkinson Post, a blog of Parkinson Society Canada December, 2009
I'll pick your sweetest flowers
Bouquet of colors!
– Peter S. Quinn
TIPS TO MAKE TOUR LIFE BETTER AND MORE ENJOYABLE
WALKING AND MOBILITY
A NOTE OF CLARIFICATION: I have never written about this before, but I think it is worth mentioning. As stated in several of the Newsletters most of the TIPS come from other people or from the book 300 Tips by S.P.Schwartz. The tips come to me basically as stated and rarely say anything about how advanced the PWP (person with Parkinsons) is with the disease. Many of the tips are for PWP who are more progressed in the illness and, therefore, not useful for those who are more recently diagnosed, and vice versa. If you are more recently diagnosed you might want to start a file or an envelope where you collect ideas for future use; be sure to include the ideas you come up with on your own. And, while you are at it, share your idea with the rest of us by sending a note or a phone call to Ed Gatke.WALKING AND MOBILITY
Walking with someone can be better than using a walker. Hold on to the arm of someone else while walking. You might want to say, “Left, right, left, right, left, right.” This can help you concentrate on your movements. Your physical therapist can help determine when using a walker is safer.
Ask first, “Would you like help?” Never grab an arm or try to help a person without permission. Let the PWP tell you how to help her/him. Remember, you are supplying balance control not physical support. Don't try to pull the person along or lift them.
If the PWP wears bifocals, he may need extra help when using stairs. Going down stairs is often more difficult than walking up. When we go upstairs, we usually look through the top of our glasses lens (the long-distance part), and when we go down we usually look through the near-distance (or reading part) of the lens. When we look down our feet are not close enough for our eyes to focus on through the reading part. This is why God invented handrails! Whether going up or down be very careful. Take one step at a time if you need to.
If you use a cane, and you must go out in icy weather, screw a removable ice gripper tip into the bottom of your cane, or use a ski pole or Nordic walking pole when walking on icy sidewalks.
New Directions in Parkinson's Treatments
taken from the Young Parkinson's Newsletter winter 2010
Current drugs for Parkinson's treat the symptoms but do not stop the progression of the disease. While there is no cure for PD to date, what follows is a review of some promising new drugs that could change the way Parkinson's disease is treated.
Continuous Dopaminergic Stimulation
The standard oral medication for handling motor fluctuations in PD is levodopa. However, for some people, levodopa's beneficial effects wear off before the next dose of medication is due. Infusion therapies may offer people with PD an alternative, when oral medications are no longer effective. This type of treatment aims to provide a more continuous stimulation of the brain receptors for dopamine.
Infusion therapies/DUOPDOPA
There is a new technology in which Duodopa, a concentrated gel-form of levodopa/carbidopa, is pumped through a small tube into the duodenum so it goes into the bowel on a continuous basis. One advantage of this style of medication delivery is that "you can formulate the exact dose, at certain times of the day, in a much more precise way than when using oral preparations; so you can adjust the dose by 1 mg rather than in 50 mg steps," says Dr. Mark Guttman, Director of the Centre for Movement Disorders in Markham, Ontario.
Duodopa therapy does have some drawbacks: it requires a surgical procedure which could lead to complications, the pump and tubing could be subject to technical problems, it requires careful monitoring and nursing support, and some people find it burdensome to carry a pump at all times. It's a complicated way of giving a medication..." says Dr. Anthony Lang, Director of the Morton & Gloria Shulman Movement Disorder Centre at Toronto Western Hospital "it's better suited to people who are taking levodopa many times a day and have bad, and often unpredictable, motor fluctuations." Guttman notes, "It could be seen as an option for people who are considering deep brain stimulation (DBS) surgery but either don't qualify for DBS or don't want to take the risks.
Although Duodopa is not yet available in the United States, it is coming. Last year, Solvay Pharmaceuticals, Inc. announced that the U.S. Food and Drug Administration (FDA) had granted Fast Track designation to the development program for levodopa/carbidopa intestinal gel. Once a drug receives Fast Track designation, early and frequent communication between the FDA and the drug company is encouraged throughout the entire drug development and review process. The frequency of communication assures that questions and issues are resolved quickly, often leading to earlier drug approval and access by patients.
Enhancing the Effect of Dopamine
A new monoamine oxidose B inhibitor
Monoamine oxidose B inhibitors (MAO-B compounds) enhance the effect of dopamine by preventing its breakdown. International phase III clinical trials are underway for a new investigative drug to determine its effectiveness and safety as an add-on dose to either levodopa or dopamine agonist medications.
Looking Ahead
Dr. Jonathan Brotchie, senior scientist at the Toronto Western Research Institute, highlights three promising drugs that are currently being studied and that could change Parkinson's treatment:
Fipamezole
Fipamezole is a drug which, when taken with dopamine medication, appears to do two things: reduce the problem of dyskinesia and increase the time the dopamine medication works. “I think this could change the way we treat Parkinson's inn a relatively short time," says Brotchie.
BllB014
The experimental drug BllB014 is one of the first non-dopamine approaches to treating PD. 'It reverses a different chemical imbalance in the brain than our current therapies," says Brotchie. "Because it is non-dopaminergic, we anticipate that it won't have the same side effects as current dopamine therapy."
Preliminary studies have shown that BllB014 can successfully do two things: One, alleviate Parkinson's symptoms, when given on its own. "That's probably the first time we've had a drug which isn't replacing dopamine that can do that," says Brotchie. Two, it appears that, when added to existing therapies, BllB013 can improve the action of those therapies, decreasing the "off time between the action of each pill. "This means that you either have to take fewer tablets every day or each tablet works longer.
Prm50028/Cogane
"Cogane has potential to restore the dopamine system in the brain, not just provide symptomatic benefit,' says Brotchie.
Glial cell-derived neurotrophic factor (GDNF) is a protein made in the brain. It helps brain cells grow when the brain is developing or recovering from injury. For the past decade, scientists have been exploring ways to increase the levels of GDNF in the Parkinson's brain to help cells survive or even grow back. Previous approaches have involved injecting GDNF into the brain through surgery or gene therapy. Gogane offers the possibility of delivering GDNF to the brain via a pill, thereby switching on the brain's ability to make GDNF.
Noting that the animal data and early human data on safety and dosage look promising, Brotchie says, "I think Cogane offers the best hope today for a drug what could actually reverse the disease. And if you could reverse the disease early enough, you could change its impact on your life. Parkinson's would then be something that you could be diagnosed with but, if you received the drug early enough, and if the drug lives up to its promise, you could imagine that it might start to reverse symptoms and even reverse the disease process."
adapted from e-Parkinson Post, a blog of Parkinson Society Canada December, 2009
April is a rainbow month,
Of sudden springtime showers.
Bright with golden daffodils
and lots of pretty flowers
Of sudden springtime showers.
Bright with golden daffodils
and lots of pretty flowers
