My latest blog post for the Northwest Parkinson's Foundation is about credible hope. You can find it here or at least, I hope you can!
Showing posts with label Northwest Parkinson's Disease Foundation. Show all posts
Showing posts with label Northwest Parkinson's Disease Foundation. Show all posts
Tuesday, June 18, 2019
17 Year Search for Credible Hope
My latest blog post for the Northwest Parkinson's Foundation is about credible hope. You can find it here or at least, I hope you can!
Tuesday, October 28, 2014
Is there Anything good About Parkinson's Disease?
Having promised to give notice when the Northwest Parkinson's Foundation published a new post written by me for their Community Blog, I would be remiss if I didn't point out this, in which I 'fess up to a bad attitude toward PD.
Wednesday, June 25, 2014
Yet another blog post for the Northwest Parkinson's Foundation
Here is a link to the most recent of my blog posts for the Northwest Parkinson's Foundation. Making a virtue of necessity, part 365. Thoughts on slowness and PD
Saturday, April 26, 2014
Second "Community Blog" Post for the Northwest Parkinson's Foundation is Now Available
My second blog post for the NWPF "Re-prioritizing hope"can be found here. This is part of an exclusive series of posts written especially for the Foundation, which is why I'm linking instead of simply publishing the text here. I hope you'll read it and find it at least thought-provoking. thanks, and festinate forward!
Wednesday, March 12, 2014
New Blog Post for the Northwest Parkinson's Foundation is up!
I recently mentioned that The Northwest Parkinson's Foundation would begin posting blog entries from me as part of their Community Blog. The first one is up, and you may read it here. This is an exclusive article done especially for the NWPF, and is not merely a reposting from this blog. I hope you will read and enjoy it. Be sure to check out the rest of the generous offering of information about PD while you are at the site.
Monday, September 9, 2013
Highlights from the Inland Hope for Parkinson's Conference, 2013 (Part One)
So you missed the 2013 Inland Hope for Parkinson's Conference? Bad move. But it's OK, your faithful blogger was there and has these highlights
Taking it from the top... Steve Wright, head of the Northwest Parkinson's Foundation welcomed the crowd of over 300, and announced a new initiative the NWPF is getting underway called "PD link" which will line up people struggling with PD with mentors. The mentors will be volunteers with PD experience who are nearby and can encourage and give pointers on how to navigate in these tricky waters. Those in need of a mentor, and those who are willing to pitch in should get in touch with the Northwest Parkinson's Foundation.
Wright was followed by a panel on making your medications work. Leading off was Dr. Pinky Argawal, a Seattle-area movement disorders doctor. Dr, Argawal began with one of the themes of the day, the complexity of Parkinson's Disease. One of the most arresting statements of the conference was Dr. Argawal's comment that some non-movement symptoms of Parkinson's Disease show up 30 years before the disease begins to show such classic symptoms as tremor or slowness.
Dr. Argawal's metaphor for PD was the iceberg, with our motor problems as the visible tip, and the non-motor symptoms as the mass below water. Which, I guess, makes we People With Parkinson's the Titanic, only sinking with majestic slowness, rather than in a matter of hours.
Dr, Argawal went on to list a number of non-motor problems with Parkinson's, and suggested ways of coping. Among her list:
Depression, which can surface as many as four years before onset of motor symptoms. Pd usually responds well to standard depression meds.
Hallucinations, can be caused by any of the drugs that are used to treat PD, or not drug related at all. This means that the first place to start is tinkering with the medications you are presently on, seeing if their are some you can lower dosage of or eliminate, altogether. Dopamine agonists and levedopa are the prime suspects in hallucination problems.
Swallowing Problems and Drooling. Dr. Argawal is in the PD-patients-make-the-same-amount-of-saliva-as-anyone-else-they-just-don't-swallow-enough-camp (the other side says our malfunctioning autonomic systems make extra saliva which we then drool out.) Argawal's suggestions for this are 1.) try sucking on hard candy, which will remind you to swallow often 2.) chew gum (Which is also said to help with speech troubles) or 3.) Botox your salivary glands.
Short-term Memory Loss. There are drugs that can help with this, but Dr. Argawal stressed that it should first be established that PD is at fault and that it's not something else at work. She also mentioned that this could be a big problem for people in driving and suggested we test our skills with an online driving exam.
Anxiety Panic attacks can be brought on by meds wearing off. Tinker with dosages and frequency to avoid "off" states.
Gastric Problems can be addressed by using patch-delivered medications, or the hoped-to-be-available-someday-soon inhaled form of levedopa. A non medicine-based strategy she suggested for gastric problems was to change to more-frequent-but-smaller meals.
Constipation suggestions included the usual, more fruits and veggies in the diet, drink more water, the option of stool-softeners, and using the bathroom when you are in an "on"state.
Sweating adjust medications, and wear cooler clothing were two suggestions.
Urgent bladder treat with anticholinergic drugs. Avoid oxybuteline, bad interactions with PD drugs, if I remember correctly.
REM Sleep Disorder this refers to the acting-out of dreams. Healthy people lose muscle tone during sleep, according to Dr. Argawal. Not people with Parkinson's Disease. Because we retain our muscle tone while sleeping we can activate them with untoward consequences, like falling out of bed or punching a bed mate. Treat with clonezepam, says Dr. A.
Obsessive Behavior this can be anything helplessly overdone in a way that causes harm, like too much gambling, sex, or shopping. Many PD medications aim at stimulating motion receptors, but other receptors, like those for pleasure may be stimulated as well. Logically treatment here is adjustment of dopaminergic meds, especially the dopamine agonists.
More coming in Part two, which I hope to post by tomorrow morning.
Taking it from the top... Steve Wright, head of the Northwest Parkinson's Foundation welcomed the crowd of over 300, and announced a new initiative the NWPF is getting underway called "PD link" which will line up people struggling with PD with mentors. The mentors will be volunteers with PD experience who are nearby and can encourage and give pointers on how to navigate in these tricky waters. Those in need of a mentor, and those who are willing to pitch in should get in touch with the Northwest Parkinson's Foundation.
Wright was followed by a panel on making your medications work. Leading off was Dr. Pinky Argawal, a Seattle-area movement disorders doctor. Dr, Argawal began with one of the themes of the day, the complexity of Parkinson's Disease. One of the most arresting statements of the conference was Dr. Argawal's comment that some non-movement symptoms of Parkinson's Disease show up 30 years before the disease begins to show such classic symptoms as tremor or slowness.
Dr. Argawal's metaphor for PD was the iceberg, with our motor problems as the visible tip, and the non-motor symptoms as the mass below water. Which, I guess, makes we People With Parkinson's the Titanic, only sinking with majestic slowness, rather than in a matter of hours.
Dr, Argawal went on to list a number of non-motor problems with Parkinson's, and suggested ways of coping. Among her list:
Depression, which can surface as many as four years before onset of motor symptoms. Pd usually responds well to standard depression meds.
Hallucinations, can be caused by any of the drugs that are used to treat PD, or not drug related at all. This means that the first place to start is tinkering with the medications you are presently on, seeing if their are some you can lower dosage of or eliminate, altogether. Dopamine agonists and levedopa are the prime suspects in hallucination problems.
Swallowing Problems and Drooling. Dr. Argawal is in the PD-patients-make-the-same-amount-of-saliva-as-anyone-else-they-just-don't-swallow-enough-camp (the other side says our malfunctioning autonomic systems make extra saliva which we then drool out.) Argawal's suggestions for this are 1.) try sucking on hard candy, which will remind you to swallow often 2.) chew gum (Which is also said to help with speech troubles) or 3.) Botox your salivary glands.
Short-term Memory Loss. There are drugs that can help with this, but Dr. Argawal stressed that it should first be established that PD is at fault and that it's not something else at work. She also mentioned that this could be a big problem for people in driving and suggested we test our skills with an online driving exam.
Anxiety Panic attacks can be brought on by meds wearing off. Tinker with dosages and frequency to avoid "off" states.
Gastric Problems can be addressed by using patch-delivered medications, or the hoped-to-be-available-someday-soon inhaled form of levedopa. A non medicine-based strategy she suggested for gastric problems was to change to more-frequent-but-smaller meals.
Constipation suggestions included the usual, more fruits and veggies in the diet, drink more water, the option of stool-softeners, and using the bathroom when you are in an "on"state.
Sweating adjust medications, and wear cooler clothing were two suggestions.
Urgent bladder treat with anticholinergic drugs. Avoid oxybuteline, bad interactions with PD drugs, if I remember correctly.
REM Sleep Disorder this refers to the acting-out of dreams. Healthy people lose muscle tone during sleep, according to Dr. Argawal. Not people with Parkinson's Disease. Because we retain our muscle tone while sleeping we can activate them with untoward consequences, like falling out of bed or punching a bed mate. Treat with clonezepam, says Dr. A.
Obsessive Behavior this can be anything helplessly overdone in a way that causes harm, like too much gambling, sex, or shopping. Many PD medications aim at stimulating motion receptors, but other receptors, like those for pleasure may be stimulated as well. Logically treatment here is adjustment of dopaminergic meds, especially the dopamine agonists.
More coming in Part two, which I hope to post by tomorrow morning.
Thursday, May 16, 2013
Two Contrasting Pages From a Work in Progress
These two pages occur in separate chapters, but make an interesting contrast. The first is from a passage about the shock of diagnosis, and how professional healers can compound the pain of disease. The second is about the gratitude due to those from all walks of life who step up and help carry the burden. There are many thoughts to tease out of this contrast, one could write a book...
(Click images to enlarge)
(Click images to enlarge)
Wednesday, November 18, 2009
The Hope Conference online
Here's a great resource for those of us unable to make it to this event put together by the most excellent Northwest Parkinson's Foundation. If as Emily Dickinson said "Hope is the thing with feathers", then the plumage of the NWPF is especially magnificent. Info below is from an email from the foundation.
Each of the presentations given at the 2009 HOPE Conference are now available online. We offer this service so that you may review or share the information offered at the conference. If you know someone that may also benefit from these presentations, please forward this on to them so that they too may enjoy the information provided.
You can go directly to the presentations by clicking here.
Don't forget to visit the newly offered online Wellness Center. There's many more tools and strategies to help improve one's self-care and quality of life. You can explore this new addition to our website by clicking here.
As always, if you have any questions at all concerning the conference, resources available to you, or ways we might help improve your quality of life, please don't hesitate to email us at info@nwpf.org or phone at 1-877-980-7500.
Each of the presentations given at the 2009 HOPE Conference are now available online. We offer this service so that you may review or share the information offered at the conference. If you know someone that may also benefit from these presentations, please forward this on to them so that they too may enjoy the information provided.
You can go directly to the presentations by clicking here.
Don't forget to visit the newly offered online Wellness Center. There's many more tools and strategies to help improve one's self-care and quality of life. You can explore this new addition to our website by clicking here.
As always, if you have any questions at all concerning the conference, resources available to you, or ways we might help improve your quality of life, please don't hesitate to email us at info@nwpf.org or phone at 1-877-980-7500.
Friday, May 8, 2009
Keeping a Lid on the PD Beast: New Coping Resource
Here's an inspired idea from the Northwest Parkinson's Foundation. It's a place for those who deal with this problem to post the tricks that they have come up with to hobble the PD beast. It's called "The Tip Jar"
What are you waiting for? Click here to go there. GO!
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