Thursday, October 21, 2010

Pete's Parkinson's portraits: Margaret Bourke-White



Margaret Bourke-White was a photographer who had an eye for images that would become iconic. Her Depression-era photos are eloquent in their simple black and white portrayal of a tough and quietly suffering people. She went on to make powerful photographs during world War II. As the war wound down in Europe she documented the horror of the concentration camps. The atrocity must have struck at her with particular force, as her father was Jewish.

Her career was a combination of art and high adventure. The website Gallery M (Where you can see some of her photographs) reports

During her unique career, Bourke-White was torpedoed in the Mediterranean, strafed by the Luftwaffe, stranded on an Arctic island, bombarded in Moscow, and pulled out of the Chesapeake when her chopper crashed. She was the first Western photographer to document Soviet industry after the revolution, to create a travelogue of Czechoslovakia and other Balkan states just before Hitler moved in to ignite World War II, and to be stationed in Moscow just before Germany bombed its former ally.


She died at 67 years of age from Parkinson's complications. A person of unusual toughness, she lived with the disease from 1956 through 1971, benefiting from then-experimental surgery. She left behind a remarkable collection of fine photographs as well as an example of courage and tenacity that sets a great model for all of us, not just those who have Parkinson's Disease.

Monday, September 27, 2010

Hoof and Mouth: Scientists Find Talking While Walking Can Lead to Falls for People With Parkinson's Disease



Well it looks like mum's the word for PD patients who are in the act of walking. According to scientists at Florida State University those of us of the Parkie persuasion are increasing our risk of falls if we jaw while jogging. No word if screaming while you fall also amounts to the kind of multi-tasking we should avoid. But if you ask me, I say, scream. What have you got to lose?

On considering this latest bit of information it hit me that there are vast implications in the Things for Parkinsonians to Avoid Doing Department. Just to be helpful, I have compiled a handy list of additional potentially hazardous forms of multi-tasking for we Parkies to avoid. NB: many of these have yet to be studied by researchers, but I am rushing to publication with them anyway. NB2: This is NOT an exhaustive list, and you should not conclude that just because it's not listed that a particular form of multi-tasking is in any way safe or endorsed by this blog. When in doubt, assume the fetal position and refuse to move. Wait, that would be multi-tasking. When in doubt, just assume the fetal position. Call me sloppy, but for heaven's sake, not while you are walking.

List of Multi-Tasking No-Nos

Rubbing BBQ sauce in your hair while sticking your head in the mouth of a lion or other large predator

Yelling "FIRE" while in a crowded theater (unless, of course, the theater is on fire)

Greeting your friend John with a hearty "Hi, Jack!" while standing in a TSA line

Petting a porcupine while chewing gum

Tugging on Superman's cape while spitting into the wind

Pulling the mask off that old Lone Ranger while messing around with Jim

Drinking and unicycling

Operating heavy machinery while sleeping

Murmuring your girlfriend's name while making love to your spouse

Murmuring your spouse's name while making love to your girlfriend

Kicking sand in the face of a bully while being a 98-pound weakling

Yelling "FREE BIRD!!!" while attending the symphony

Acting as your own attorney while having a fool for a client

Repeating "Hide me, The monkeys are in the control booth!" while undergoing a psychiatric evaluation.

French-kissing an ostrich while either sober or inebriated (either of you)

Laughing maniacally during confession

As I mentioned above, this is not an exhaustive list. If you notice any egregious omissions, please post a reply with your multitasking no-no. If you have a complaint, just give me a call when you're out walking.

Thursday, September 23, 2010

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

Tuesday, September 14, 2010

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.

Monday, September 13, 2010

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

Thursday, September 9, 2010

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?

Thursday, August 26, 2010

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...

Sunday, August 22, 2010

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.

Saturday, August 14, 2010

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

Tuesday, July 20, 2010

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"