Home-made hope: Pete to speak at Hope Conference in Seattle this November

Excitement! Suspense! Harrowing adventure!...That's what's in it for me. What's in it for you when I speak at the Hope Conference in Seattle? I plan to look at the idea of "Home-made hope, lessons learned in spite of myself in rebuilding your life after diagnosis". The Hope Conference is an event for people with Parkinson's Disease, their families and care givers. Here is a summary from the American Parkison's Disease Association Seattle Chapter

Saturday, November 6, 2010

Seattle Airport Hilton Convention Center
17620 International Blvd
Seattle WA 98188

The American Parkinson Disease Association,Washington Chapter, and the Northwest Parkinson's Foundation are co-hosting the region's largest educational symposium for patients, family, friends, and caregivers.

Guest Speakers:
Dr. Jay Alberts, Biomedical Engineer Assistant Professor at Cleveland Clinic, Lerner Research Institute
"Is Exercise Medicine for Parkinson's Disease?"
Dr. James Leverenz, Associate Professor, Depts. Neurology and Psychiatry, University of Washington
"Research Update: Biomarkers and PD"
Dr. Monique Giroux, Movement Disorder Specialist, Medical Director of the Northwest Parkinson's Foundation
Wellness Center
"Wellness Choices for Brain Health"
Peter Dunlap-Shohl
"Homemade Hope, How to Thrive Today with PD"
Matt Ford, PT, MA, PhD, University of Alabama at Birmingham
"Music is Exercise for the Parkinson's Brain"

What dreams may come

So it's time to turn in after another day of tremors, dyskinesia and muscle stiffness. As a hard workin', hardly workin' Parkie, you're ready for a well-deserved three or four hours of sleep before your nightly high-stakes race to the toilet. Well not so (pardon the expression) fast, bradykinesia boy. It would be un-parkinson's to expect any part of life to be unmolested by this all-pervasive and all-perverse malady.

It seems that although we people of the Parkinson's persuasion do not have the liberty to move freely during the day, our addled nervous systems grant us the unusual ability to physically act out our dreams. Why is this an unusual ability? Well, humdrum, everyday, normal people have a mechanism that restricts motion while they sleep. This keeps them from damaging themselves, or others, while acting out their dreams.

In still another of the ironies of Parkinson's Disease, a person who has Parkinson's may paradoxically act out their dreams. Which, as you may have guessed I did this morning.

Let's join my nightmare just as I am about to deliver a desperate blow to a lethal
and deranged cab driver. It's the one chance anyone has to stop this madman. Riding a surge of adrenalin I swing hard for his head and wake on the jolt of the abrupt connection of bone to bone, suddenly jerked alert by the pain in my hand as it slams into my cell phone that a second ago had peacefully rested on a box next to my bed. The phone flies off the box and skips across the floor into the kitchen, seemingly anxious to put as much distance as possible between itself and the unpredictable violent lunatic in the bed.

You always hurt the ones you love.

Local Man Finally Dies of Parkinson's Complications

Note: At a recent APDA-sponsored Parkinson's Disease seminar a speaker suggested that one way of coping with bad news is to realize that there are people who have it worse than you. Fair enough, but somewhere in this weary world there must be the ultimate loser, that last guy whom everyone else is fortunate not to be. As a public service, Off & On has dug up this hapless schlemiel, one Herb Sleeper of Fargo, North Dakota. The following is his obituary as it appeared in the Fargo FreePressArgusChronical Weekly Shopper.

Relatives of Herbert (Herb, Bert) Sleeper are pleased to announce the passing of their late father/husband/brother/cousin/uncle. Members of the family were universal in their sense that "A great weight has been lifted from our shoulders" as his brother Harold (Heavy) Sleeper was eager to tell this reporter. "For starters, he lived in Fargo" his brother continued "If you could call that living". Harold fondly recalled how when they were young they would roam the wide plains at will, getting bitten by ticks, stung by bees and assaulted by motorcycle gangs. "All God's creation seemed to be against us in those days" he said, his eyebrows dancing as he recalled how his brother had been struck 12 times by lightning."Not uncommon for those of us living in 'The lightning strike state' but a bit unusual for just one day" he said with a pimpish grin.

"Maybe it was the lightning that caused his Parkinson's" his wife Shelly said, "Or maybe it was the pesticides that he routinely drank after hearing a friend complain of a stomach bug. Whatever. Of Herb it can be truly said that he took his early-onset diagnosis lying down" She remembered with clear distaste how Herb would complain about his symptoms in a voice that grew softer and softer by the month. He wanted speech therapy", she laughed as she recalled, "But we were all against it".

Still she was unable to disguise a note of admiration as she looked back at Herb's fierce struggle to not do anything about his deteriorating condition. "He'd blow off taking his pills, missed Doctor appointments, and hey, forget exercise!" she smiled. "He said he'd die before he joined a support group which come to think of it, I guess he did. His one accomplished goal in life. His only goal now that I think of it. Pitiful".

Herb will be remembered as a great indoorsman, who liked nothing better than rising early to hunt for his remote. "He and that damn remote were inseparable" recalled his wife. "It was agony waiting for him to change channels what with his tremors and slowness. We used to watch infomercials for hours as he attempted to aim the thing at the TV. When there were no good infomercials on, he would lie endlessly on the couch moaning inarticulately to himself and any unfortunate soul who happened near. No matter how bad things got, Herb was willing to share the misery. He's better off now that he's dead. Hell we all are." No services will be held . In lieu of flowers the family asks that you simply send them money, unlike Herb, therapy ain't cheap.

On the Job Training for People with Parkinson's Disease

Parkinson's is like having a job you never clock out of. It's a combination of clerk, (what pill am I on now? When do I need to order more?) researcher, (what can I learn about this new symptom, that proposed medication, this new technique, that new facility?) dietitian, pharmacist and any number of other specialties that crop up as you make your way on the PD journey. The hours are long, the pay is laughable, and don't get me started on the health plan.

Unfortunately, the reasonable response of "Sorry, I'm not qualified to have Parkinson's Disease" will not deter this ambitious disorder from selecting you for the position. This means that we have to grab every opportunity for learning. Here are highlights from several recent sessions of "on the job training" that I was able to take advantage of.

The first was a web conference for people who blog about Parkinson's Disease that offered us a chance to ask questions of an academic neurologist. The presentation was somewhat marred by the discussion of about PD basics that were familiar territory for those of us attending. The presentation only came alive for me at one point. The doctor was asked about falling and his reply was offered with a note of urgency that gave it impact. His answer was that once you start falling, there is not much that you can do to improve your balance. His advice? A newly diagnosed patient should take up Yoga or some other balancing discipline as soon as possible so as to be so, as he put it "overcompensated" in their balance skills that the disease will have much farther to go to erode this ability to the danger point. This was the first time I have ever heard of overcompensation used as strategy outside of Wall Street wage practices. If overcompensation is good enough for them, it's good enough for us!

Next up were a pair of presentations held in Wasilla, made possible by the Washington Chapter of the American Parkinson's Disease Association. A shout out to them, especially Evie, for going to the trouble of coming all this way and bringing such excellent speakers.

The first to talk was Doctor of Pharmacology Steve Setter. During a presentation enlivened by humor, Dr Setter left us with a number of excellent thoughts for managing medications. Among the tips:


Know your pharmacist The complexity of the Parkinson's family of disorders along with other problems you may have, for example abnormal blood pressure or heart problems means that you need someone on your team who is looking at what all your doctors are doing with all your medications. Where this is not possible, for instance when you must mail order your meds, it behooves you to study the reams of boring info in tiny type that comes with the pills. See "researcher" above.


Know the shape, color and size of your medications if something looks different, ask. Pharmacists do make mistakes sometimes.

With or without food? Efficacy of drugs and the ability to tolerate them are often pegged to this issue.

Always take pills with fluids make sure that pill goes where it can be readily absorbed instead of lodging in your throat.

Know the optimal timing of your doses here Dr. Setter offered an interesting tidbit: If you know that you are going to be stuck in a car or airplane and you don't want to be dyskinetic the whole time alter the timing of your dosage to allow for that.

Over the counter medications can have interactions with prescription medications. An example cited was Tylenol pm, which contains benedryl, this, when crossed with PD medications that make one sleepy can add up to an exaggerated snoozing effect.

Dr. Setter offered the National Parkinson's Foundation's drug handbook (Download it here) as an especially helpful resource.

One final point that Dr. Setter made was that we need to be careful about giving advice to other people with Parkinson's based on our experience. Because every case of PD is different, and because PD meds act differently in different people at different stages one person's experience may not be comparable to another person's.

Dr. Setter was followed by Dr. Kris Rhoades, a neuropsychologist practicing at Virginia Mason Hospital in Seattle. Dr Rhoades spoke on cognition, depression and sexual dysfunction in Parkinson's Disease. As usual this hard-working disease is doing its darndest to undermine us in multiple ways. In the area of cognition Parkinson's affects the frontal lobe of the brain, impairing what doctors call "executive function" and what you and I call multi-tasking, planning, speaking the ability to retrieve memories and the ability to adapt. With its habitual irony PD attacks the very areas we need to use in order to cope successfully with it.

So how do we work against this? Some Alzheimer's medications help, along with our old friend exercise and the practice of exposing oneself to new ideas and situations, fostering flexibility in our brains. Personally, trying to do all of the exercise and brain stimulating I can and hoping it takes a long time to catch up with me.

Dr. Rhoades then moved on to depression. We know it is common in Parkinson's disease, and that the lack of dopamine, which is one of the main feel-good chemicals in our brains is a major hallmark of Parkinson's Disease. So the nature of our disorder makes us easy targets for depression. Depression in Parkinson's is often characterized by slowness, impaired concentration, weight loss, sleep disruption, diminished appetite and decreased sexual desire. In my experience it is also marked particularly in men with denial. I asked Dr. Rhoades if he could suggest any strategies to break through to a depressed person and get them to deal with it. His Zen koan-like answer: "How many neuropsychologists does it take to change a light bulb? Only one, but the light bulb has to want to change".

On dealing with depression, Dr. Rhoades said that anti-depressants give us a window to deal with the problem, implying they are a temporary solution to the problem. Beyond advocating exercise, which my reading and personal experience confirm help quite a bit, I don't recall much that he offered to go beyond them. And if the depression is the result of some chemical imbalance triggered by our disease, why not continue to use them as more than a stop-gap?? Dr Rhoades, if you are reading this, I welcome comment.

From depression and dementia, it was on to sexual dysfunction. Dr. Rhoades took on some myths and barriers to understanding and coping with this problem. Among the myths: Older adults do not want sex, older adult sex will be dysfunctional, and that older adults cannot be treated for this problem. Not necessarily so, says Dr. Rhoades.

He went on to outline some special areas of difficulty for PD patients: Movement impairment, changed appearance, masked face, sleep disturbance, fatigue, and change in roles in the partnership involved. He also listed differences between the sexes when it comes to sex and PD. Men still become aroused, but then have erectile failure. Women are less easily aroused. Spot the PD irony here? Every muscle in your body becomes stiff except the one you want to become stiff. Parkinson's, you crazy jokester you!

What to do? Vow of celibacy, anyone? Me neither. That leaves us with the fall-backs we are all at least dimly aware of. For men, those pills which everybody is spamming you about constantly (talk to your doctor.) Oral estrogen, creams, lubricants and additional stimulation and foreplay for women. Above all Dr. Rhoades advocates talking with your partner. Communication you may have gone without in the past is now imperative. A good reason to consider speech therapy!

Dr. Rhoades asked that we recognize pragmatics, that we acknowledge emotional stress, consider demonstrating love in non-sexual ways and talk frankly and openly about sex with our partner.

That's all from this edition of on the job training here at Parkinson's University (P.U)
Let's conclude with the P.U. Anthem:


For Parkinson's we won't sit still,
Though long the climb and steep the hill
Until we've popped our final pill,
P.U. we'll keep learning.
Depressed and slow, dysfunctional too
Still we raise our glass to you
We'll kindle hope and rise anew.
And keep the home fires burning.


Is there a dry eye in the house?

Face Value

A reader just passed on this fascinating New York Times story that deals with the tremendous amount of non-verbal communication that people transmit with subtle facial cues. Cues that we people with Parkinson's Disease are often unaware we no longer send. (You can find an earlier piece that I wrote on this subject here)

This is a valuable reminder that if we do not understand and somehow compensate for the meanings and nuances that we do not transmit because of our frozen faces, we are likely to encounter more than misunderstanding, we may be dismissed as dull, or perceived as angry. Which of course we may be, but who wants to start with that as the default setting for their face?

The article discusses several strategies that people use to get around the problem of the paralyzed face. Unfortunately some of these, such as the exquisitely pitched voice, or the well-tempered laugh, are difficult for those of us with Parkinson's to execute. It's important to be aware of this and work out compensating strategies. I've found it useful, even necessary at times to explain my poker face. People may assume that if you appear to be hiding your emotions, there is some deep and nefarious reason for it, and it puts them on their guard.

How important is a facial expression? So important that it can be read across species lines by our pets. Dogs are great students of humanity (cats don't give a rat's tail) and can learn to mimic a "social smile" I know this because my old dog, the legendary Sadie, learned to do it. We came home one day from work and, in addition to the customary leaping and tail-wagging, we were greeted by a slight curling of her lips. "We've got a grinner dog! Pam exclaimed, and from then on whenever she would start with one of her peculiar little grins we would smile back with all the wattage we could muster, until she mastered a wide grin that, if you didn't read the rest of her body language, bore an alarming semblance to a snarl.

How do I know that this was a "Social smile"? I saw her use it as one, just as a human would. This was years ago on a ski trip that took two days. On the morning of our second day we emerged from our chilly sleeping bags and set about cooking a hot breakfast. I don't remember exactly what we fixed, but to a cold and hungry dog it must have smelled of heaven.

My friend Peter loaded his plate up, then set it down to fetch something. Sadie crept quietly up from behind and was about to devour his breakfast when Peter turned around and caught her, unleashing a fusillade of angry words. Sadie retreated about ten feet, then turned around and gave him the biggest "Who me?" apology grin of her career. It was a brilliant deployment of a facial cue, and it worked, getting her off the hook.

A hook that impales me frequently now that I must concentrate and remember to smile. It's easier when I remember even a dog will do it.

It's June, Let's eat!

Hello Friends, Can it be? I think it's... YES! Time for the annual picnic. We've had a year to recover since the last one, so the moment has arrived. Put your best feed forward, and step up to the plate. Once again Pam and I will grill some buffalo, you bring whatever you think you prepare well and enjoy eating- it's potluck roulette at the casino cafe!

Here is the essential information
Who: Anyone with an interest in Parkinson's Disease and an appetite
When: Saturday June 19th, 3:30 in the afternoon
Where: Pam and Pete's palatial Parkie Playground, 9601 Elmore Rd. That's just South of the intersection of Abbott and Elmore Rd.
Please alert us if you plan to come so that we have a rough idea of the amount of food we need.
Questions? Call 350-9691
We hope to see you there!

Pete

The Sound of the Man Working on the (Bicycle ) Chain Gang

(Above, a picture of me sent by friend Scott McMurren. It was shot from his car when he happened across me aboard my recumbent. In his typical kindly way, he titled this "Riding Nerdy")

Although I am crazy about bicycling, my earliest memory of riding is not a good one. I was maybe six or seven and was just learning on my sister's hand-me-down royal blue Raleigh. Before me, the open road. Behind me, my mom, running as I pedaled, her hand gripping the saddle to steady me. Only... what's this? Applause? That's Mom clapping! That can only mean there is nothing holding me up! Exactly like Wile E. Coyote walking into thin air off a cliff, when I became aware that there was nothing holding me up I went down hard.

I've had numerous spectacular falls since then, including one that left my right cheek impaled by an old rusty aerial from a car radio, and another when I smacked into a woman who was sharing a joint with her boyfriend on the path down from West High hill. And now that I have Parkinson's Disease I expect to fall from my bike frequently.

Yet I don't.

Even more mysterious than the human ability to balance on two skinny tires while hurtling forward is doing this while your movement is compromised by Parkinson's Disease. Recently a small sensation was kicked up by a report that a Dutch man with advanced PD was barely able to walk but rode his bike six miles per day (you can see him tremoring up a storm, then riding his bike here)

This is a case where the patients are way ahead of parts of the medical community. I doubt this news shocked Davis Phinney or Doug Bahniuk, or any of a great number of parkies who pedal.

Like them, I feel freest and most like my old self when on a bike. But what I didn't expect was all that biking could restore.

Lately I have been struggling with my voice, partly because new settings on my deep brain stimulator seem to interfere with my brain's vocal centers. My speech can quickly deteriorate into rushed and indecipherable syllables. And my singing, to use a decipherable syllable: Oy!

So I was surprised when about 45 minutes into a 2 hour ride yesterday when I found myself singing in the saddle with better pitch and strength than I had been able to muster for months. I easily warbled "Pancho and Lefty", "The January Man", and host of other songs from my personal hit parade. When I launched into "Poisoning Pigeons in the Park" I envisioned a full-blown musical. In the show-stopping big production number the kids on a passing school bus joined in with four-part harmony on the chorus while a trio of street-corner inebriates doo-wopped and a bevy of meter maids high-kicked in between writing tickets. All this only slightly marred by gasps for air.

That exercise can at least temporarily improve PD symptoms is confirmed by exciting work done by Dr. Jay Alberts of the Cleveland clinic. But it's one thing to read about the amazing research results that Dr. Alberts is reporting, or even to see video. It's quite another to find yourself flying ahead on two skinny tires, singing your fool head off, and held up against all belief by an invisible hand.

Flash Molasses Episode 16

Looking for a fight? Thinking differently about Parkinson's Disease

Everyone wants to fight Parkinson's Disease. I've used that pitch myself. But I have come to wonder if "fight" is the word we want.

For one thing, thanks to good science and good care, people with Parkinson's can expect to live as long as those who haven't got it. If, like me, you are in your 50s that means perhaps three decades of fighting ahead. That is an exhausting prospect.

Furthermore, for all the strategy and discipline required of a fighter, in the end fighting is about force and really, how far is that going to take you? What's the plan? Punch Parkinson's in the nose? Good luck with that.

Parkinson's Disease is not a thing or a person. In fact in its most notable aspect it's the very absence of something, dopamine, that causes the symptoms which we are bound by. And even these symptoms are often described in terms of what is gone, what no longer exists, the ability to move freely, to smell, to balance.

To fight Parkinson's Disease is to fight phantoms. This is a terrible form of asymmetric warfare, because though you can't fight phantoms, they can conquer you.

In making our condition into a struggle with a tireless behemoth we run the risk of asking too much of ourselves, and too little. To cast the job of living with PD as a battle with this implacable and, let's face it, undefeated foe, is to set yourself up for failure. Why not look for other metaphors that might be more fruitful?

How might we think of it? We can approach our journey through Parkinson's Disease the same way Phillipe Petit approached his high wire walk between the towers of the World Trade Center. Petit's walk on the wire required discipline, intelligence, courage, and above all balance. (He also threw in a sizable measure of artistry, but I'm trying not to ask too much.)

Discipline is what we must have to deal with the rigors of living while adhering to the routines that our illness requires of us, the pills, the mindfulness in speech, the necessity of knowing when to say no, and just as important, when to say yes. Intelligence? Cultivate a thirst to know all you can about PD. Every fact is a tool to help you live better. Courage? Courage is a tough one. It helps to have others around you that must master the same terrain. That's what the support groups are for. Balance, in the sense of knowing your limits and yet pushing against them is something that we all need to practice. The sooner the better.

Can these skills enable you to live well with Parkinson's Disease? Much depends on you. But they did carry a man through the air high above the hard and busy streets of Manhattan not so long ago.

Flash Molasses Episode 15