The Keynote address was delivered by former Spokane neurologist Anthony Santiago. Tremendously popular with local patients, he was credited by several people I talked to for the high turnout at the conference. He walked vigorously up and down the stage as he went through his PowerPoint slides. He began by explicitly addressing the complexity of Parkinson's Disease, and by explaining that PD is not a dopamine-centered disorder. In fact, the substantia nigra, where the brain manufactures dopamine is one of the final stops of this disease, PD is present in the gut and olfactory systems years before it begins its mischief in the motor center of the brain. For this reason, mere dopamine treatment is neither sufficient, nor efficient in treating the entire disease.
Dr. Santiago offered a number of observations of interest. Among them were:
-treated Parkinson's Disease is not fatal
- The idea of postponing any dopamine-related therapy is based on myth, and leads to lesser quality of life
-In fact, the earlier treatment is introduced, the better patients do.
Although his talk was entitled "Dopamine Replacement Therapies" the most interesting part was when he talked about new medications that look beyond dopamine to other chemicals that contribute to Parkinson's miseries. He mentioned Addex, still at the trial stage, which aims at the substance glutamate. Addex acts on a receptor that that causes dyskinesia, allowing more on time with less excess movement.
In some ways Dr. Santiago summed up the conference with his emphasis on the complexity of Parkinson's, and pointed the way forward by talking about looking beyond the narrow focus on dopamine-centered treatments. While acknowledging that complexity, he also embodied the spirit of hope and optimism that were at the core of this event. Certainly the reach and infernally tangled nature of Parkinson's disease has never been clearer. But until a problem is clear, how can you hope to resolve it? By that light, we're much closer to where we need to go than we were ten years ago.
==========================================
A note on these posts about the Inland Hope Conference: These reports are based on my notes, and reflect my biases and abilities to make accurate recordings of the event as I experienced it. Corrections, questions or disputes about facts or their interpretation are welcome. Please post with civility in the comments section.
Showing posts with label Inland Hope for Parkinson's Conference. Show all posts
Showing posts with label Inland Hope for Parkinson's Conference. Show all posts
Wednesday, September 11, 2013
Tuesday, September 10, 2013
Highlights of The Inland Northwest Hope for Parkinson's Conference, 2013 (Part three)
Holy Moly, here we are at post three on the Spokane Parkinson's conference, and we are only up to late morning! We have arrived at the third panelist of the "Making Your Medicines Work for You" segment, Physiotherapist Leo Norfleet, Dr. of Neuro-kinetics. Norfleet has been working on a Parkinson's-targeted therapy program for the past twelve years.
"Hold on!" I hear you say, "Therapy isn't medicine." But therapy is exercise. Exercise is a way to tap into the body's own pharmaceutical factory, producing "trophic" chemicals, cell growing substances in the brain. As for the panel topic, "Making Your Medications Work" Dr. Jay Alberts has shown vigorous exercise can improve symptoms 30% or more after a month of regular sessions. Or as Norfleet put it "Exercise is essential, because it's about moving."
Moving well starts with good posture, described by Norfleet as "Ears over shoulders, shoulders over hips". When rising from a chair, rely on your strongest muscles, those in your legs, not those in your hands. Lean forward and push off using legs and toes. He also talked about pacing and endurance, noting that Parkinson's requires both fast and slow exercise. In addition, exercise should require full range of motion, and should aim for both strength and flexibility.
Working out when you are "on" will lead to better results and minimize your risk of injury.
Norfleet also had advice for care partners. Where possible, avoid pulling a person with PD. This leads to tug of war. He advises leading the person with Parkinson's with their hand on the care partner's shoulder. This fits with my experience. When troubled by freezing, I have been able to walk by following my wife and concentrating on stepping in her foot steps. This is a thought that leads neatly to the next speaker, Psychologist Jennifer Van Wey.
Dr. Van Wey, who specializes in geriatric psychology, spoke on "Finding a new path". Her fundamental idea is that psychologically, the person with Parkinson's and their care partner need to be treated as a unit. One person may get Parkinson's, but the effects ripple through all they are involved with, their care partner most profoundly. So her talk was aimed at the "Unit". Complexity again.
The two who make up the unit may react differently to the news of diagnosis. One may be energized or relieved to have the trouble identified and categorized. The other may be frightened and feel helpless. She asserted that each person will deal with Parkinson's according to their nature, but that common feelings shape reactions to disease. People with Parkinson's do not want to be defined by their disease. Care partners did not sign up for their role (except in the broadest sense, where they have made marriage vows.) The different reactions can lead to friction. Partners need to set the pattern for healthy coping skills early, as they form the template for behavior down the road.
Dr. Van Wey emphasized numerous times that the fundamental coping skill was honest talk, communication within the unit. The talk must in general be guided by reciprocity and respect of differences. And what is there to talk about? Plenty. Among the changes the unit faces in the patient over time will include slowness in movement, difficulty in speech, difficulty in grooming, changes in sexual desire and practices. Care partners will experience changes in the role they play in the relationship, reactions to the progression of disease in their partner, and fatigue from the extra responsibility. For the unit to adjust successfully, these things have to be made manifest to each partner through talk.
Advice for caregivers was to try to blend the new role with the old role as spouse. Both partners need to accept the "Bad" thoughts that may come. They are inevitable as thoughts, but not as outcomes. When things do go badly, look to the wider circle of care. Doctors, family and support groups are all there to help.
Cues to seek help include two that demand attention. If your partner is not sleeping well, the unit is headed for trouble. If your partner no longer does the things they formerly enjoyed, beware.
What to ask for when you need help. Consider changes in meds, working with a psychologist, taking part in research aimed at your particular problem.
That ends part three of this series. I hope to have part four up tomorrow.
"Hold on!" I hear you say, "Therapy isn't medicine." But therapy is exercise. Exercise is a way to tap into the body's own pharmaceutical factory, producing "trophic" chemicals, cell growing substances in the brain. As for the panel topic, "Making Your Medications Work" Dr. Jay Alberts has shown vigorous exercise can improve symptoms 30% or more after a month of regular sessions. Or as Norfleet put it "Exercise is essential, because it's about moving."
Moving well starts with good posture, described by Norfleet as "Ears over shoulders, shoulders over hips". When rising from a chair, rely on your strongest muscles, those in your legs, not those in your hands. Lean forward and push off using legs and toes. He also talked about pacing and endurance, noting that Parkinson's requires both fast and slow exercise. In addition, exercise should require full range of motion, and should aim for both strength and flexibility.
Working out when you are "on" will lead to better results and minimize your risk of injury.
Norfleet also had advice for care partners. Where possible, avoid pulling a person with PD. This leads to tug of war. He advises leading the person with Parkinson's with their hand on the care partner's shoulder. This fits with my experience. When troubled by freezing, I have been able to walk by following my wife and concentrating on stepping in her foot steps. This is a thought that leads neatly to the next speaker, Psychologist Jennifer Van Wey.
Dr. Van Wey, who specializes in geriatric psychology, spoke on "Finding a new path". Her fundamental idea is that psychologically, the person with Parkinson's and their care partner need to be treated as a unit. One person may get Parkinson's, but the effects ripple through all they are involved with, their care partner most profoundly. So her talk was aimed at the "Unit". Complexity again.
The two who make up the unit may react differently to the news of diagnosis. One may be energized or relieved to have the trouble identified and categorized. The other may be frightened and feel helpless. She asserted that each person will deal with Parkinson's according to their nature, but that common feelings shape reactions to disease. People with Parkinson's do not want to be defined by their disease. Care partners did not sign up for their role (except in the broadest sense, where they have made marriage vows.) The different reactions can lead to friction. Partners need to set the pattern for healthy coping skills early, as they form the template for behavior down the road.
Dr. Van Wey emphasized numerous times that the fundamental coping skill was honest talk, communication within the unit. The talk must in general be guided by reciprocity and respect of differences. And what is there to talk about? Plenty. Among the changes the unit faces in the patient over time will include slowness in movement, difficulty in speech, difficulty in grooming, changes in sexual desire and practices. Care partners will experience changes in the role they play in the relationship, reactions to the progression of disease in their partner, and fatigue from the extra responsibility. For the unit to adjust successfully, these things have to be made manifest to each partner through talk.
Advice for caregivers was to try to blend the new role with the old role as spouse. Both partners need to accept the "Bad" thoughts that may come. They are inevitable as thoughts, but not as outcomes. When things do go badly, look to the wider circle of care. Doctors, family and support groups are all there to help.
Cues to seek help include two that demand attention. If your partner is not sleeping well, the unit is headed for trouble. If your partner no longer does the things they formerly enjoyed, beware.
What to ask for when you need help. Consider changes in meds, working with a psychologist, taking part in research aimed at your particular problem.
That ends part three of this series. I hope to have part four up tomorrow.
Monday, September 9, 2013
Highlights of The Inland Northwest Hope for Parkinson's Conference, 2013 (Part two)
We bring you now up to mid-morning at the Inland Hope for Parkinson's Conference, 2013. The second speaker in the "Making Your Medicines Work For You" panel, Laurie Mischley, N.D. a Naturopath who also holds a Master of Public Health in Epidemiology from the University of Washington.
Dr. Mischley had several worthwhile points to make. First, that Government-set RDA's (Recommended Dietary amounts) are guidelines for healthy people (Whoever THEY are) and those of us with Parkinson's Disease need to address the differences in our needs. In her view, because of the presence of apparent cell-death in PD, we need to manage our diets for anti-oxidants. A good rule of thumb here is to follow the Mediterranean diet: lots of fruits and vegetables, preferably of rich color, the more colors the better. Not so much red meat, oily fish instead, (Wild Alaska Salmon fills the bill uniquely well) go very easy on the processed grains, whole grains in moderation. Cut way down on sugar.
Dr. Mischley emphasized the "Customized " nature of each person's case of PD (There is the complexity theme again) saying that each person has to assess their unique situation. One thing she recommended looking at was your homocysteine level. High levels are neuro-toxic. For such situations she recommends citicolene, citing a study that found that when administered at moderate levels it resulted in a drop in levedopa requirement of 30-50 %. This is to me an amazing claim, so I Googled and found this on Pubmed, from the NIH:
Citicoline is available as an over the counter supplement, common in health food stores. The ususal warnings about unregulated supplements apply. Further reading indicates no significant side effects or horrible interactions with PD meds, so talk it over with your doctor and see what feedback you get.
Dr. Mischley also cited a study in which the authors found that DHA Fish oil. which is the form of fish oil with the longest molecule was helpful with Dyskinesia, reducing it 40% with a tablespoon a day of the oil. Again I was floored, again I Googled, and came up with this, from the 2013 World Parkinson Congress in Sydney, Australia:
So this is a study of one guy for five weeks. The room here for the placebo effect is wide. It will be nice if they can confirm this with a larger study. The question for you is "How much do I like fish oil?"
Dr. Mischley then went on to offer some sensible thoughts on protein and levedopa, saying that people are a bit over-afraid of protein, and that you need it. She has found a 30-40 minute buffer time around meals does the trick for those who have the problem of with protein interference with levedopa.
Dr. Mischley had several worthwhile points to make. First, that Government-set RDA's (Recommended Dietary amounts) are guidelines for healthy people (Whoever THEY are) and those of us with Parkinson's Disease need to address the differences in our needs. In her view, because of the presence of apparent cell-death in PD, we need to manage our diets for anti-oxidants. A good rule of thumb here is to follow the Mediterranean diet: lots of fruits and vegetables, preferably of rich color, the more colors the better. Not so much red meat, oily fish instead, (Wild Alaska Salmon fills the bill uniquely well) go very easy on the processed grains, whole grains in moderation. Cut way down on sugar.
Dr. Mischley emphasized the "Customized " nature of each person's case of PD (There is the complexity theme again) saying that each person has to assess their unique situation. One thing she recommended looking at was your homocysteine level. High levels are neuro-toxic. For such situations she recommends citicolene, citing a study that found that when administered at moderate levels it resulted in a drop in levedopa requirement of 30-50 %. This is to me an amazing claim, so I Googled and found this on Pubmed, from the NIH:
"Eighty-five patients with an established diagnosis of primary Parkinson's disease were randomly assigned to receive their usual dose of levodopa (mean, 381 mg daily) plus 1,200 mg of citicoline daily or half their usual dose of levodopa (mean, 196 mg daily) plus the citicoline. Results of the Webster Rating Scale, a pegboard test, drawing, writing, and walking tests, a test of emotional state, and an overall assessment, administered before and after four weeks of treatment, revealed no significant between-group differences. Improvements on the tests were shown by more patients who received half their levodopa dose plus citicoline than by those who continued to receive their usual levodopa dose plus the citicoline. It is concluded that the levodopa-saving effect of citicoline could be used to decrease the incidence of side effects and retard the loss of efficacy of levodopa in long-term treatment."
Citicoline is available as an over the counter supplement, common in health food stores. The ususal warnings about unregulated supplements apply. Further reading indicates no significant side effects or horrible interactions with PD meds, so talk it over with your doctor and see what feedback you get.
Dr. Mischley also cited a study in which the authors found that DHA Fish oil. which is the form of fish oil with the longest molecule was helpful with Dyskinesia, reducing it 40% with a tablespoon a day of the oil. Again I was floored, again I Googled, and came up with this, from the 2013 World Parkinson Congress in Sydney, Australia:
Objective:
To objectively evaluate the effect of fish oil supplementation on levodopa-induced dyskinesia (LID) using a wearable inertial sensor.
Background:
Docosahexaenoic acid (DHA) is a long-chain omega-3 polyunsaturated fatty acid (PUFA) found in high concentrations in brain membrane phospholipids. In PD cell models, DHA has been associated with dopaminergic cell survival, up-regulation of neurotrophic factors, and antioxidant activity. LID are writhing, uncontrollable movements that occur as a side effect of levodopa treatment, an otherwise indispensible PD therapeutic. DHA is a recognized activator of nuclear receptors that operate as transcription factors, one of which is thought to contribute to the development of dyskinesia. In a nonhuman primate model of PD, DHA delayed the development and reduced the severity of LID.
Methods:
This is a case report of a PD patient with severe dyskinesias was prescribed one tablespoon per day of high DHA Finest Pure fish oil (3600 mg DHA + 780 mg EPA) daily. So as to be able to objectively determine whether the fish oil corroborated the patient-reported outcome (PRO), the patient agreed to have his dyskinesia formally assessed using a wearable inertial sensor and validated clinical outcome measure before and three weeks after starting the intervention. The wearable sensor was worn on the wrist for 5 days and on the torso (front shirt pocket) for 9 days.
Results:
The sensor reported both the percentage of time that dyskinesia was detected and the dyskinesia magnitude during the detected periods. After five weeks of therapy, the dyskinesia magnitude on the torso and wrist were significantly reduced (P=0.0114 on wrist and P=0.0175 on torso). There was not a significant difference in how often dyskinesia was detected on the wrist, but it was detected significantly less on the trunk (P=0.0082). The Unified Dyskinesia Rating Scale (UDysRS) score decreased from 46 to 29, a 37% reduction.
Conclusions:
Fish oil supplementation was associated with an improvement in dyskinesia, as evidenced by an objective wearable inertial sensor, supported by both patient report and the validated clinical outcome measure, UDysRS. This intervention warrants further evaluation in a larger population"
So this is a study of one guy for five weeks. The room here for the placebo effect is wide. It will be nice if they can confirm this with a larger study. The question for you is "How much do I like fish oil?"
Dr. Mischley then went on to offer some sensible thoughts on protein and levedopa, saying that people are a bit over-afraid of protein, and that you need it. She has found a 30-40 minute buffer time around meals does the trick for those who have the problem of with protein interference with levedopa.
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.
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