Monday, December 23, 2013

A Day With Parkinson's Disease, the Complete Archive

This page contains all pages of the Day in Parkinson's series, beginning with the first and ending with the last. 

Now that the project is complete, a few thoughts to close with. First, everybody has a different case of Parkinson's Disease. Some have no tremor, some have strongly predominant tremor. Some progress through the disease stages quickly, some slowly. Some are affected more on their right side, others on the left, and so on. So a day with PD is likely to be very different from one individual to another. 

And one person can vary substantially from day to day. I took notes all day on a day chosen at random to base this narrative on. It is faithful to those notes for that day except for obvious exaggeration for humor, i.e. exploding curry. 

If I seem to be coping well, it's more due to luck than personal virtue. First and foremost I was lucky to marry a person of great steadfastness and understanding. Second I am benefiting from years of patient and difficult research and the imaginative thinking of doctors, scientists and patients who have collaborated over the long run to find the medications and surgical procedures that I benefit from every day. Without them I would be bedridden right now. 

Finally, thank you for reading and commenting. Your thoughts and observations help me to clarify what I do and where it goes. A cartoonist without readers is a bird without a sky.

























































































































































































































































































































A Day With Parkinson's, page 6

To see the entire day sequenced in one post, look here

Wednesday, December 11, 2013

Page one of a new comic: A Day with Parkinson's Disease

Hi folks, here is the first page of a new multi-pager. I don't know yet how long it will be, but multi, for sure. The plan is to take you through what a day is like with a chronic debilitating and progressive disease that undermines your ability to do just about anything physical. Think of it as positive wallowing, turning frustration, anxiety and misery into art. Ready? 3-2-1- WALLOW!!!!!
To see the entire day sequenced in one post, look here

Saturday, December 7, 2013

Going Pro- Years of Free Labor on the Web about to Pay Off With New Blog Gig

That's right friends, after years of pontificating, complaining, and passing along dubious opinions and thoughts as though they were Gospel, my misbehavior  has resulted in a monthly blogging gig with the Northwest Parkinson's Foundation. My posts will begin in January. I expect that the material I create for them will be similar to what I put up here, except I will be paid for it.

I have resisted past opportunities to make money from this blog as I don't want any questions to arise about who I am beholden to. In writing Off and On, I am and have been accountable soley to readers. In return you have been kind in your comments and your support as followers of the blog. (Which reminds me: Thank you!) I am not worried about being beholden to the NWPF. After ten years experience with them, I have confidence in them as an organization. Plus, they are not paying me THAT much.

I intend to continue Off and On, although I am tinkering with the idea of pushing  it farther into visuals combined with writing. I will post links here to the work I do for NWPF, and they will link back here. If you have topics you think need addressing, I'm all ears. Post a comment to the blog, or email me at dunlapshohl@gmail.com

Thanks to readers from around the globe for the precious time you have spent reading Off and On. I hope to continue making it worth your while.

Wednesday, November 27, 2013

Nine Out of Ten Doctors Recommend You Read This Post to Keep up With Anchorage PD Events for December

Well here we are in the dark days of December, but remember, it's always darkest right after the lights go out, and then you can gradually begin to make out dim shapes, obstacles and impediments, and before you know it,  you are navigating like it was broad daylight, unless it's really dark, in which case you should stay in bed... um... where was I ? Oh yes! It's PD update time! Should you  decide to get out of bed, and nine out of ten doctors recommend that you do, here are some things to which you could do:

Yoga for PD, lead by Rocky Plotnick, who says:

Our Yoga for PD class will continue in December through Thursday, December 19th.
This means we meet:  December 5, 12 & 19.  Still at 1:15 pm at ADT.

There will be no class on Thanksgiving, however every year the
Inner Dance Yoga Studio has a special yoga practice on Thanksgiving.
It's at 10:00am.  Karen Greenwood is a skilled teacher and I am sure all
levels & abilities are welcome.

For January, Mike & I will be traveling so no class.

Once the schedule is approved by ADT, I will be ready to start classes again in February.

And Dance for PD, led by Carolyn Lassiter, who says:


Hello beautiful dancers,

Here is updated class schedule information:

Tuesday November 26, 2013:  NO CLASS, ADT is closed for Thanksgiving week

Tuesday December 3, 2013:   regular class

Tuesday December 10, 2013 through Tuesday January 14, 2014:  NO CLASS, teacher will be out of state

Tuesday January 21, 2014:  regular class resumes

Then of course, there is also the  Telehealth broadcast, the 9th of December at 1:00 pm in room 2401 of the Providence oncology wing on Piper St.  Go to the second floor, walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right. This month: Laughter and Parkinson's.

Then it's on through the drifted snow and holiday revels to our regular meeting the 21st, at 3:3o, it will be time for our annual holiday potluck! I'll bring something main-dishy, and you all bring what you like that you think the rest of would like.

I think that about covers it. I hope to see you at some or all of the PD events  in December. Happy (insertholidayofyourchoosing) Peter

Tuesday, November 26, 2013

A Comics Thought Experiment

I have this recurring feeling that I should be through with Parkinson's. That I can go back to normal now. That I have done my time. It's a feeling that is reinforced each morning when I wake up. Until I try to move, I feel the same way I did in the days, more than ten years ago, before my first symptoms showed up. Then I try to walk to the bathroom. Bang goes another illusion. And yet I retain the feeling that, if I just knew whom to talk to, whom to see, they could wave their hands and make my PD disappear. So this comic is a look at how that would likely play out.





Wednesday, November 20, 2013

Here is the Trailer for a New Film About Parkinson's Disease

This looks promising. I backed these guys on Kickstarter, and as a premium, they are supposed to send me a video DVD. When it comes, I plan to share with our support group.  The trailer looks great

Thursday, November 7, 2013

What Parkinson's Disease Feels Like

I don't know about you, but my email is filled daily with email from people who don't know me sending me generic appeals for things in which I have no interest.  So I was surprised yesterday when I opened my email program and found an email from a Website called Townspot. It was written by an actual human who had obviously looked hard for what she was after, and given some thought to what she would say. They are interested in including my videos about Parkinson's Disease on their Website as examples of quality work being done in Anchorage in the video medium.

What? You haven't seen the videos? That's an OUTRAGE! (By the way, how can "enraged" and "outraged" mean the same thing?)  Luckily for both of us, this gives me an excuse to post the videos here. Again.  These are not meant as complaints, (Well, maybe the last one is an exception) merely as descriptions of what it feels like to have this LOUSY, CURSED, INFURIATING DISEASE! Oops, sorry for that little outburst, nothing to worry about. Just a little tear in my cloak of invulnerability. Here, you watch the videos while I go off and patch that. Roll film! ( I am posting two versions, apparently iPad users cannot see the first one. Sorry the second one is cut off, but if you tap on the frame it will take you to YouTube where it willplay full-frame.)
video




Tuesday, November 5, 2013

The Parkinson's Forecast for Anchorage and Vicinity for November


​Hello one and all, here's the Parkinson's Disease roundup for the merry month of November. The word from the Parkinson's​
​ Resource center is that we will not have a telehealth broadcast in November. The program will return on December 9th. The topic for that day will be "laughter MAY be the best medicine". Stay tuned for more as details emerge. For the November meeting on the 16th, I'm trying to get the assistance dog people to come. If they do come, we'll see if we can get them to sit, and speak. So far, they are just playing dead.
And finally, put this bee in your bonnet. I have been the alleged ringleader of the support group for eight years now. It has been a tremendous experience. But I am losing the fire in my belly. It is time for someone else to leap into the breach and lead us to a brighter tomorrow. If you've been thinking to yourself lately that the meetings seem a little flat and that there is more that the group could be doing, that is a sign that you may have what it takes to be the next Parkinson's Poobah here in Anchorage. 

It's not a complicated position. Just a matter of setting up a monthly meeting, getting the word out, and being  resource/liaison to the local community and to the PD world at large. The position comes with some unique privileges. You get to work with some terrific people, and in the course of carrying out the various functions of this office, you will be the person through whom the information flows about the latest developments in the world of PD.
If you have an interest in this, shoot me an email or let me know at the next meeting, which, as noted above, will be November 16.
Thanks,
Peter

Thursday, October 17, 2013

Meeting? What mee... Oh! THAAAAT Meeting...

Yes friends, like clockwork, we once again are fated to gather together! The meeting is this Saturday, 10-19, at 3:30. Huzzah! Peter, what is on the agenda? Thanks for asking, Peter. We have an exciting guest on tap, unfortunately, they haven't gotten back to me yet.  So if they cannot be inveigled to come, we are going to look as a group at the complexity of Parkinson's disease. I was surprised to hear neurologist Pinky Agarwal say that non-motor symptoms of our disease can go back as long as 30 years before motor symptoms appear. So let's all look back in our personal histories and come prepared to talk over different things you noticed that in retrospect were early signs of your PD from the time way before you were diagnosed. I will have a few items prepared to kick off discussion, and look forward to seeing you then.

The Semi-Collected Adventures of that Semi-Collected Superhero, Flash Molasses

Here they are folks! The almost full collection of the adventures in Parkinson's Disease of that plucky PWP, Flash Molasses! Apologies for vagaries in formatting. For instance,  I see there are two episodes labeled #8. The first should be labled  #7. Why it isn't, I haven't a clue. I'm pretty sure there is no episode 13, in a rare incidence of triskadecaphobia, I seem to have omitted it. But maybe there is. All the drawings can be enlarged individually by clicking on them.

You can see Molasses evolve and devolve as I shaped him over time and as PD began to sabotage my drawing. Then he snaps into focus following my DBS operation in 2008.

The final horizontal-format drawing was my contribution to Team Cul de Sac, the cartoonist's project to raise money for the Michael J. Fox Foundation. The brainchild of Chris Sparks, in honor of cartoonist Richard Thompson, Team Cul de Sac has raised over $100,000 for the eradication of Parkinson's Disease.
















































































































































































































































































































































Thursday, October 10, 2013

On Being Swallowed by a Boa Constrictor


"For the life of man is but a span,
He's cut down like the flower.
He makes no delay, he is here today,
And he's vanished all in an hour"

 ~ May Song, from the singing of Martin Carthy

Like its victims, Parkinson's Disease is slow. According to Neurologist Pinky Agarwal, the first subtle symptoms of the disease, for instance loss of sense of smell, may crop up 30 years ahead of the classic hallmarks tremor, stiffness, and slowness.

It's difficult not to think of the disease as beginning with the tremor or stiffness which you can point to as emblematic of your problem. But to appreciate the complexity of Parkinson's, we need to re-frame the way we perceive it.

Parkinson's is a brain disease, right? Well, yes, eventually. But before it reaches your brain it is silently and for the most part, painlessly, doing damage as it creeps through your gut and olfactory system.

Parkinson's is a disease of movement, Right? True, also of emotion, sleep, thinking, focus, balance, and the list goes on.  

Parkinson's is a disease of the elderly, right? Absolutely, but it is also a disease of  the middle-aged and even the young. Apply Dr. Agarwal's 30 year time-frame to my case. I was showing symptoms that allowed diagnosis when I was 43 years old. That puts the start of my disease around age 13.

Chances are I've been dealing with PD just about as long as I have been doing anything. Considering this, the temptation is to wonder how much was lost to disease without my even realizing it. I ponder what it cost over those years to cope with the subtle-but-ever tightening  squeeze of this patient boa constrictor. I brood over what I might have been able to do had I not been engaged in this lengthy unconscious struggle.

Yet, to suffer from Parkinson's Disease is to enjoy a privilege. I don't mean some perverse notion of how suffering somehow makes us better. What I mean is the sheer fact that in times gone by, it was a major achievement to live to be old enough to manifest the symptoms of Parkinson's Disease.

According to Wikipedia, Upper Paleolithic (stone age) humans had a life expectancy of 30 years at birth. (By odd coincidence 30 years is the same length of time Dr. Argawal put on the process of PD building in our systems prior to announcing itself with motor symptoms.) Neolithic humans had it even tougher: 20 short years flew by, and it was time to meet your ancestors.  You say "Bah! That was long ago." Granted. What was it a mere 100 years past? In the early 20th Century, at birth: 31 years. So much for nostalgia.

Seen in this light, it's all gravy past 30. And here we can learn from Parkinson's Disease. Take the long view. I'd rather be swallowed by a boa constrictor at 55 than be eaten by a saber-tooth tiger at the tender age of 20.



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:

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.

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