October in Parkinson's: What's Brewing

The daylight hours are growing shorter. Ok, you didn't need me to tell you that. But maybe you'll prick up your ears at this: The Northwest Parkinson's Foundation will favor us with another interactive Telehealth presentation that may be viewed live in room 2401 at Providence Hospital's new cancer wing. The date will be October 11th, the time 1:00pm. The topic will be Addictions, Compulsions and Prioritization with Parkinson's. For more info, call 1-877-980-7500. For a wrap-up of the last Telehealth confererence, look here.

For our October 16th meeting, I plan to give a sneak preview of the speech I have been invited to give at the Hope Conference in Seattle this November. I was asked to provide a patient's point of view and I came up with a multi-media presentation called "Homemade Hope". I'll be looking for your feedback to make this as successful a presentation as possible. Again, the date is October 16, 3:30 in the afternoon at the Pioneer home.

Thanks,

Peter

Teleheath Conference: That's Entertainment!

A band of die-hard Parkinson's information fanatics were treated to a display of fact-packed, well-thought out answers to questions from around the Northwest fielded by Spokane doctor David Greely. The Q&A was the centerpiece at yesterday's telehealth symposium. The symposium is a monthly interactive broadcast hosted in Anchorage by Providence Hospital. The supporting cast, in the form of small gatherings of attendees from Moses Lake to far-flung Anchorage asked thoughtful questions, and provided a certain amount of sympathetic comic relief as we watched one another struggle with technology using our PD-impaired bodies. (Extra points for the drama provided by the solitary elderly lady who spent several minutes under the table on camera out there somewhere. It was a relief to all of us when you reappeared in your seat and returned to noisily scratching your pencil on what I sure hope was paper.)

While a few questions may have vanished into the haze of the technological Bermuda Triangle, some significant points emerged that were well worth the time and effort of attending. Among the most compelling for me:


Muscle Cramps: can be treated by proper hydration, metabolic balance and addressing sleep problems, Which is, duh, the way you would treat them in a patient without PD. Sometimes we're not so special.


Eating and Pills: According to Dr. Greely, nine out of ten people with Parkinson's do not find any difficulty with this. For those that do, he still recommends taking your meds with a small bit of cracker or other non-meat to cue your digestive process to go into action. A pill is not usually enough in itself (unless you are taking some mighty big pills, Chester) to prompt the stomach to empty and push your medicine down the line to your intestines where it can be absorbed into your blood.

Stem Cells: Two thoughts here, relief from this direction is years down the road if it is to come at all, and the problem in the technology is not installing the cells, it's regulating them so that they produce the proper amount of dopamine in the brain. Dr. Greely likened it to the famous "Sorcerer's Apprentice" scene from the Disney Movie Fantasia. First you have one broom, then two, then four, then eight, then chaos.

Exercise I see you rolling your eyes out there. At least that's one part of you that's moving. I know that I harp on this subject ad nauseum. But Dr. Greely made a new point that rang true for me the second he said it. If you exercise, you will get better care from your doctor, from your caregiver and anyone else in your network of care, because you will send the message that you are trying. It doesn't have to be dramatic, start with what you can do and work up. But show those who work to keep you going that you are willing to do your part. They'll love you all the more for it.

As if you were not already busy enough...

OK Parkie Pals, limber up those fingers to mark the following dates on your calendars: TODAY the 13th, 1:00 Telehealth Seminar interactive info session on PD at Providence hospital second floor of the new cancer wing.


Sept 18,Saturday at our regular meeting at the Pioneer Home at 3:30 we will have a presentation on Deep Brain Stimulation (DBS) for Parkinson's Disease from Swedish Hospital in Seattle. Peggy Short, Advanced Nurse Practitioner and DBS programmer will be our main guest. This meeting will also be attended by Keely Daily of Medtronic, the makers of the deep brain stimulator. Unfortunately Dr. Ron Young, a DBS surgeon had to cancel his participation.

Remember our DBS motto, "You need PD like you need a hole in your head." I'll see you there.

Oh, one more thing, I festinated across an excellent blog for those of you who have the exalted, or exhausted, status of PD caregiver. The blog is "Slow and Easy" you can find it here

Must run now, or at least shuffle,

Peter

The Parkinson's Parade

Congratulations! You’ve got Parkinson’s Disease! Yes! You’ve hit the disease jackpot! The bells are ringing, the lights are flashing the crowd is hysterical because Parkinson’s is no mere disease, it’s a whole cream-center assortment of ailments packed into one! It’s a disease-a-ganza, a smorgasdisorder, a never-ending buffet of indignities, inconveniences and setbacks large and small.

Parkinson’s is no simple sickness. Instead it is a malady made up of a host of disorders that normally would be considered diseases themselves. But in Parkinson’s, they are mere symptoms, a part of the larger picture.

What do I mean by a “host” of disorders? I'll just run through a number of them off the top of my head. For starters, you look as though you are taking this stoically and with an Olympian calm. But that’s because you have lost the ability to use your facial muscles to express your inner feelings.

The inability to use your facial muscles this way, when it occurs on its own, can be a disease called “Moebius Syndrome”. It is rare, but it is no less a disease for that. One effect of this disorder is to cause its victims to lose their ability to express emotions subtle or dramatic. To have a frozen face is to present an eerily blank slate to the world. A world that often concludes that you are unreadable because you are up to no good, and treats you accordingly.

That should be plenty for any disease, but Parkinson’s is an overachiever. Parkinson's is just getting started!

So to frozen face, let’s add dystonia. Dystonia is the involuntary flexing or cramping of a muscle. Not only can this be painful, it can result in a person a enduring twisted hands or other body parts held at bizarre angles. Nasty enough, but only one marcher in the PD Parade.

Marching right behind dystonia, we have depression. Like PD, Depression can exhibit itself in many ways: the blues, lethargy, and slowness of movement are some. And on they come, Parkinson's sufferers are hosts to many more combinations of what could stand on their own as full-blown diseases. There's urgent bladder, tremor, cognitive impairment, sexual dysfunction, even loss of the sense of smell.

There is some good news here. Many of these problems can be alleviated for many years with proper medication and careful management of exercise and diet, But this industrious disease refuses to quit there! On top of all the first level effects, there exists a second tier of disease-like complications that set in over time from the medications. For instance?

Well, how about dyskinesia? That's the dance-like uncontrolled movements made as the brain becomes less able to handle the levels of medication in your system. Suddenly, you're moving too much instead of not at all. This does have its benefit on the exercise front. I lost at least ten pounds while undergoing endless bouts of unwanted movement. But it complicates anything requiring an accurate hand abominably, and you move in a spastic ballet that looks like Joe Cocker dancing Martha Graham.

But PD isn't all physical torture. Drug side effects can also involve mental disturbance. Because PD medication is involved with dopamine, which regulates feelings of reward as well as movement, the introduction of dopamine-like drugs can lead to compulsive addictions to things like gambling or sex.

Many, but not all these disorders can be held at bay with brain surgery. That's the good news. The bad? Many of these disorders can be held at bay, but it takes brain surgery.

This is by no means an exhaustive list, though it is an exhausting one. Oh, which reminds me, one more Parkinson's complication that is a disease in itself. Narcolepsy- the sudden dropping off into deep sleep, a surprise nap attack that strikes all at once without warning. But then again, with all those diseases on board, is it any wonder a person needs a little shut-eye?

How Would You Like Your Deadly Lizard Venom?

Here's an approach that hasn't yet been tried for Parkinson's disease. And no wonder. Are you ready to warm up to trusting the healing powers of the Gila Monster? Scientists in Britain are developing a treatment for Parkinson's disease that incorporates Gila venom (or a sythetic substitute). They say the stuff works, stopping the cell loss characteristic of the Parkinsonian brain, and even improving symptoms. They cited success in 5 different rodent models of the disease. So once again, exciting news for rats.

For humans, further developments will depend on the results of a small trial being organized in Britain. One hopeful note is that this drug is already in use for diabetics, which means it can at least be used safely in treating humans.

And think of the boasting potential! "I'm a rip-snortin' Parkie with venom in mah veins! The juice of the deadly Gila Monster is mother's milk to me!"

You can have the first taste. No, really, I insist...

Build Your Parkinson's Word Power, part 4

OK folks, time to dive once again into the wonderful world of Parkinson's vocabulary. (Previous posts on Parkinson's vocabulary here, here, and here) And isn't it like Parkinson's to sabotage your ability to speak at the same time it hands you a handful of shiny and slippery new words to master? Where to begin? Well, here is a confusing term "Parkinson's Disease Support Group" What's confusing about that? I hear you asking. It's plainly a group that comes together to further the cause of Parkinson's Disease, work to spread it and try to perpetuate it at home and abroad. In short, to support Parkinson's Disease, just like it says.

Well, what's confusing here is that is just the opposite of what these groups do. They actually exist to help those afflicted with Parkinson's to cope with their ailment and many raise money and work in other ways to end this scourge forever. So check out your local support group, and while you are there, see if you can get them to change the name to something more accurate, like Parkinson's Disease Patient Support Group. It will probably help immensely with membership.

Here's a word you don't see everyday, though as a person with Parkinson's Disease you probably experience it all the time: Hyposmia- the reduction of your sense of smell. Hyposmia? Well "Hypo" translates roughly as "not enough of" like in "hypothermia". So "osmia" must mean "smell" or "stench". Hold on while I check that out... and darned if "osmia" isn't Greek for "Smell". As it turns out "Hyposmia" is related to the word "Anosmia" the loss of your entire sense of smell. Again we can break anosmia down to its parts to get the meaning- "A"(which means "without") + "Nosmia" which is obviously (OK, I'm guessing here) Greek for "nose". Which gives us "Without a nose" or to have no sense of smell!

Another fabulous PD term is "cogwheeling". It applies to the lack of smoothness of motion in our joints, almost as though they had cog mechanisms instead of the standard-issue flesh and bone. While we're on the subject of mechanistic metaphors for Parkinson's, allow me to introduce you to a fine coinage my wife came up with: "Pinballing". This is a term she uses to describe my overmedicated, underbalanced locomotion through space, bouncing off this, running into that and generally threatening havoc wherever I lurch. He slams into a table!DING! DING! DING! 500 points! Sets a chair to spinning! (Light strobes) 650 points! bounces off the wall! BUZZ! 250 points per contact! And it looks folks, like... YES! ...Congratulations! an all-time high score! What do you win? Lucky YOU! You win another turn.

Incomi...er, make that Upcoming Anchorage Parkinson's Events

Hello friends, Here's what's coming up in the Anchorage Parkinson's world. August meeting will be held the 21st, Saturday at 3;30in the Anchorage Pioneer home. Betty Berry would be glad to lead a concurrent meeting for caregivers, She asks those interested to please email her at (bberry2205@gci.net). She also writes

"I received a notice in the mail regarding a Senior Housing Fair sponsored by Providence to be held at the Senior Center Thursday, August 19.

Learn about housing options available in Anchorage and Mat-Su for seniors in the areas of : Independent housing - Assisted living - Skilled nursing care and more -(so states the notice.)

Thought this might be of interest to those in the Parkinson Support Group.
Our upcoming meeting will be open phones, sharing tips and experiences."

For the September meeting we will have a group from Swedish Hospital in Seattle including Peggy Short, Advanced Nurse Practitioner and DBS programmer, and Dr Ron Young, a neurosurgeon with nearly 30 years of DBS experience, who is now practicing at Swedish, This meeting will be held the 18th and will also be attended by Keely Daily of Medtronic, the makers of the deep brain stimulator.


If you have a topic you would like to explore at a future meeting please email me

dunlapshohl@gmail.com

A final note, Yoga Instructor Karen Greenwood will soon be offering a Yoga class for the movement impaired through her Anchorage Studio. We will offer to pay class fees for members of the Anchorage Parkison's Support Group. Yoga is recommended for flexibility, strength and balance. Any of you who feel like you are better than average in these important areas, raise your hand. No hands up? Great, I'll see you all there! More details to come.

Pete

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.