Wednesday, September 11, 2013

Highlights of The Inland Northwest Hope for Parkinson's Conference (Part Four)

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.  

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.

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:

 "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:


To objectively evaluate the effect of fish oil supplementation on levodopa-induced dyskinesia (LID) using a wearable inertial sensor.


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.


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.


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.


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.

Sunday, September 8, 2013

An Off-and-On exclusive! Speech to Inland Northwest HOPE for Parkinson's Conference on Humor and Parkinson's Disease

More-or-less alive... from Spokane... It's yours truly, talkin' humor and Parkinson's Disease! On the teeny-tiny chance that you are interested, here is the text along with visuals from my presentation September 7 in Spokane, Wa.

Thank you for having me. When I looked at the program I saw that every speaker here was a doctor, or at least could dance. Except one.  So, why am I qualified  to stand up here and talk to you? Let me cite the ultimate authority, my first grade teacher, Mrs. Bill. It was she who wrote in the comments section of my report card, and I quote "Peter has lots of information he is willing to share."  It’s my mission in life.

I mentioned in a post to a Facebook page for people with Parkinson's Disease that I was working on a comic book about PD. The response from one man was "Too soon!" Really? Too soon for whom?  I am ten years past diagnosis, when do I have permission to laugh? More important, why would I forgo a coping tool as powerful as humor?

I understand the fear that laughter can be inappropriate and may trivialize what is serious and sober. But I reject the idea that it's not OK to joke about serious things. That is a belief that trivializes and misunderstands humor.

There is tremendous precedent for making jokes about the important and serious sides of living. Bill Mauldin drew brilliant cartoons about that lighthearted topic World War II.

(Above, a Mauldin cartoon from WWII. Find a big ol' trove of Mauldin cartoons here )

Did Mauldin trivialize the war? General George Patton thought so. He met with cartoonist and attempted to to intimidate him face-to-face. Luckily for Mauldin, he had a fan who outranked Patton- Supreme Allied Commander Dwight D. Eisenhower. Not only did Ike outrank Patton, He also understood humor better than “Old Blood and Guts” According to Ike "A sense of humor is part of the art of leadership, of getting along with people, of getting things done."

At its most basic, humor is a tool for getting through the tough parts of life. Like any tool, it can be misused. There is no doubt that humor can be abused in the form of bullying. All of us can remember Rush Limbaugh's mocking of M J  Fox. Pathetic as it is, even this brand of humor is protected by our Constitution. Humor by the strong that targets the weak and wounded is contemptible and needs to be called out as such by others exercising their free speech. Shame on us if we neglect doing this... because life has few pleasures to compare with skewering a pompous ass.

But let's return to the need we have for humor. Humor can do so much for us. Can you name your worst moment with Parkinson’s Disease? For me it was the moment I got my diagnosis. You can cry about it, as I did then, or you can laugh about it, as I can now. Below is an animated video I did as part of a series on PD. This one is about how the moment of diagnosis feels to the person diagnosed

Part of reconciling myself to that awful moment is gaining the power to laugh about it.

Here is something you don't see every day- a cartoon I did on facial masking in pd. Part of the loss of our ability to move our muscles voluntarily is the inability to express our emotions using the muscles of our faces. This cartoon uses humor to do at least three things. To teach, to comfort and to foster community. All that in a little drawing?

Well I've had reprint requests from professors, pd publications and  support groups worldwide to republish this drawing for just those reasons.

I use humor to explain aspects of pd on my blog "Off and On". Here is a poem published there in April, PD awareness month. It’s also Mathematics Awareness month, Sexual Assault Awareness Month, Child Abuse Prevention Month, Confederate History Month, National Safe Digging month, Autism awareness month and more.  So that’s a bunch of stuff to be aware of during April, one of the shortest months.  How to get someones attention for PD? Why  not use poetry? That way you can kill two birds with one stone, because it’s also National Poetry month.

Few things are as comforting as knowing you are not alone in facing your illness. This sense of solidarity can be sealed by the use of humor. When someone else “Gets it” like you do, you know you’ve found a person who likely shares your concerns and way of thinking. That's the idea behind my comic "Flash Molasses". Flash is a superhero whose super feats consist of dealing with the daily activities of life while at the same time coping with Parkinson’s. I've made Flash my alter ego so it's clear that I'm sharing the misery, not mocking it.

This first one is about “urgent bladder” like the header says, this is based on a true story. But please note that if Comtan is one of the drugs you take, (it is part of the pill that goes by the name Stalevo) your urine will likely be orange even if you are adequately hydrated.

(Click to enlarge)

Another sharing of the misery piece here, this is a short animated video about the frustration of waiting for your meds to kick in.

After a few years of blogging about Parkinson’s, people began urging me to write a book about it. I resisted by pointing out that there are tons of good books about PD, and asking people what I had to contribute that was different. Finally, my friend Steve pointed out “You treat Parkinson’s as an adventure.” That seemed like an angle worth looking at. So I wrote one.
The book I am working on tries to comfort and explain with humor,  In fact there was too much humor in the manuscript and the editor asked me to take some out, explaining that it would become tiring to the reader. I did manage to leave quite a bit in chapter two. Ironically this is one of the editor’s favorite chapters.

And here is another use for humor. When the brilliant cartoonist Richard Thompson was diagnosed with Parkinson's Disease, his friend  Chris Sparks decided to do something about it. Instead of a walk or a pancake feed, Chris decided to use humor. He sold Thompson’s publisher  on the idea of making a tribute book to the cartoonist. The hook was to have other artists draw their versions of the characters from Richard's strip "Cul de Sac". Most of those in the cartooning world revere Richard, and jumped at the chance to contribute.

Around 100 cartoonists, including Bill Amend of Foxtrot, Lynn Johnston, of For Better or For Worse,  and Bill Watterson of Calvin and Hobbes contributed drawings. Long story short: over $100,000 raised for the MJ Fox Foundation for pd research.  you can order the book through Amazon, or look for it at your local bookstore. Here is the piece I did.You will notice the Parkinson’s Disease monster indulges in “Bullying Humor” discussed earlier. It’s like a nasty talk-radio host.

I will close with the idea that humor in itself is good treatment for Parkinson's Disease. we all know our pd is aggravated by stress. What is better than humor for resolving this? It's known biology, laughter releases those feel-good chemicals endorphins that chase stress away, just like exercise can.  I know plenty of pd patients who don't want to exercise. But who doesn't want a good laugh?

Finally,  humor can decrease the power that something or someone has over you. This is why Syrian authorities kidnapped political cartoonist Ali Ferzat and broke his hands. It’s why the caricaturist Daumier was thrown in jail. Twice. Why does this undermining of power work? Because much of the power any force has is the power we give it through our fear. Humor can disarm fear thoroughly and permanently.

Thank you