Upcoming PD Events For Anchorage

Hi folks,
Here's your Parkinson's breaking news bulletin for Anchorage and environs. Today (Monday the 11th) there will be a telehealth presentation at Providence hospital called "An overview of treatment options for PD". Look for this event in room 2401 at 1:00 p.m. That will be followed this Saturday by a support group meeting at our usual plush digs at the Anchorage Pioneer home. We are still hoping to nail down our Tai Chi speaker for that, but I do have a backup plan should that, if you'll pardon the expression, fall through.

See you at some or all of these fab PD events

Can you Keep a Secret? It's Parkinson's Disease Awareness Month

Pssssst... keep it under your hat. Don't tell a soul. This is your-eyes-only stuff on a strictly need to know basis, and yes, I'll have to kill you after I tell you. Can you handle the truth? It is, believe it or not, Parkinson's Awareness Month.

Once again April, in all her cruelty, demands that an oblivious world divert its attention from the disaster in Japan, War #3 in Libya, and even the lovely locks of Justin Beiber to (ahem) us.

April is the time we are supposed to raise our soft slurred voices in a cry for attention. A cry to which the World will likely reply "What? Couldn't catch that. Come again?" And who can blame it?

With the thousands of worthy causes out there demanding attention through such tired devices as "awareness" months, how do we get the world to focus on our particular little tragedy? That is the question of the moment.

But is it the right question? Isn't a better question why should anyone care? Given all the other sad, desperate conditions and predicaments that humanity faces, what can and should we do to make it worth the World's time to devote its distracted mind and heart to us?

Let's begin convincing people PD matters by ditching Parkinson's Awareness Month. Reserving a month for PD awareness leaves eleven months for Parkinson's obliviousness. We need to let people know they should care about Parkinson's Disease year-round. How? For a start, if you are hiding your PD, come out of the closet and let people know. This is especially important for young-onset patients. I have met good doctors that couldn't believe I had PD because I'm "Too young". An invisible problem is not going to rise to the top of anyone's to-do list. You must allow people to see your predicament before they can feel compelled to confront it. If you're not part of the problem, you're not part of the solution.

So you boldly step out of the closet. That's a start. What next? You have to show you care. If you can't be bothered to resist Parkinson's Disease, why should anyone with a less obvious stake in the matter be bothered? If you need some ideas about how to do this, no worries, here are a few. Start a blog, volunteer as a PD research subject, join a support group, get involved in a fund raising event. With a little enterprise on your part every month will become Parkinson's awareness month. People will be eager to cure it just to make you go away.

Learn what you can do to take better care of yourself. Whether the Lord helps those that help themselves or not, I do not know. But I am convinced that people are more apt to help out when they see you are trying to make your situation better rather than shrugging your shoulders and waiting for the next blow. Get speech therapy, work those stiff and sore muscles with regular exercise. Eat right. Manage your medication well. Do your research and learn all you can about how you can function more effectively in spite of what this disease will do to drag you under.

Whew, that'll easily fill up a year. A person might be forgiven for wondering if there is no simpler way to inspire interest and compassion from a stressed out over-busy world. Actually there is. But it would be wrong to wish PD on Justin Bieber.

Another Walt Whitman Moment ("I celebrate and sing myself" yet again)

Hang on to your gag reflexes while the Off and On Promotions Department issues the following press release...

OK, let's get this over with quickly, minimizing our mutual discomfort at naked, opportunistic self promotion.

TheAlaskaPressClubhashonoredtheblogOffandOnwithfirstplaceinthecommentaryblogcategoryforworkdonein2010.ThisisabigdealforPeterwhoissoexcitedthatheisevennowcomposingaselfaggrandizingpressreleasewhichhewillsoonposttotheaforementionedblog.

Whew, thank heavens that's done. The management here at Off and On appreciates your forbearance in this matter, and expects to refrain from this sort of behavior for at least a year, and probably longer. Thankyou.

Smiley Crisis

Smiley faces may look innocent, even bland. Don't let the little bastards fool you. That innocuous icon can plunge an unwary soul into startling existential awareness, ripping off the band-aid of denial with a smart sting. One moment you are methodically filling out an online form, the next you are confronted with the unwelcome shock that your relation to reality has significantly shifted without you noticing.

Here's what happened. I have been using the online tool I mentioned a few posts back to track my medications against my on-off cycle. I had run through the process several times and it was becoming familiar. I came to the final step where the program asks you to give a general snapshot of your "wellness" by clicking one of three icons. The choices are a smiley face (feeling good), a non-committal neutral face (feeling average), or a frownie face (feeling bad).

I was about to pick the smiley face when it hit me. Whoa, not so (relatively) fast Parkie boy. You feel good compared to what? The fact is that with PD, I am more likely to aspirate saliva and erupt in a coughing spasm, more apt to have difficulty speaking and being heard, subject to weird involuntary motions if over medicated, and unable to move normally if too far between doses. Yet at that moment, despite whatever symptom I was experiencing, I honestly thought I felt better than average.

That's when I realized how far I had come in incorporating my illness into my self. A different, healthy me who was experiencing the symptoms that I felt would have chosen the frownie face. That is, I would have chosen Mr. Frownie after a quick search for the sheer primordial panic face. But the person that I am, having lived now for more than nine years with various symptoms, has evolved a new scale for quality of life that locates "good" where it's safe to say most healthy people would find the opposite.

Humans are adapters. That's why we're found everywhere on Earth in all seasons, from Point Barrow in January to the Sahara in August. Where adaptation calls for moving we become nomads. Thoreau wrote that he had traveled extensively in Concorde. I've come farther than I ever suspected in Parkinson's Disease.

PD Pop Quiz (and a question for support group leaders)

To misquote David Bromberg "there I was again right where I Knew I shouldn't be". It was hours to meeting time and thanks to laziness I didn't have any plan for the support group activity. This left me with two options. I could stand up in front of the members and tell them straight from the shoulder that once again Generalissimo Pedro had dropped the ball, trying to keep a brave face while they tore my stripes off. We'll call this option 1. Option 2 was to improvise something at the last minute and try to make it look like I had planned it all along. The human heart being what it is, I opted for #2. This is called turning a problem into an opportunity. Although the two look much alike at this stage.

Really it's turning the problem into an opportunity to turn the problem into an opportunity. Creating the opportunity is now the problem. Somehow in that pregnant moment when irresistible force (laziness) smacks into immovable object (meeting time) out of the chaos springs an idea: The PD Pop Quiz! A little brainstorming on content and presto- instant meeting. Here it is:

PETE'S PD POP QUIZ (Answers at the end of this post)

Three early signs of Parkinson’s Disease Are A: Slowness B: Dementia C: Loss of sense of smell D: Tremor predominantly on one side E: Hair loss

Which symptom does not respond to treatment with sinemit? A: Tremor B: Loss of balance C: Slowness and stiffness

True or false: PD is contagious ( ) T ( ) F

True or false: The most noticeable effects of PD are caused by the loss of the neurotransmitter seratonin in the brain ( ) T ( ) F

An rare side effect of some PD medications is A: Offensive body odor B: Sex or gambling addiction C: Flatulence

True or false: Voice therapy is useless in PD ( ) T ( ) F

True or false : If I have PD, I should quit exercising ( ) T ( ) F

The tiny handwriting of people with PD is called_____________________

Scientists now believe that Parkinson’s is underway in the body (A) 6 months (B) 1 Year (C) more than a decade before it is commonly diagnosed.

True or false: PD is a disease of the old ( ) T ( ) F

A diagnosis of PD is a death sentence ( ) T ( ) F

The part of the brain where cells are dramatically lost in PD is called the
A : Cortex B: Hippocampus C: Substantia Nigra

DBS is the acronym for ___________________________

True or false: PD is curable with present medication ( ) T ( ) F

True or False: PD is treatable ( ) T ( ) F

Extra credit: PD is better than A: A sharp stick in the eye B: A sharp stick in the brain C: A dull stick in the eye

So why am I bothering you with this beyond showing off? Well, because the stupid thing made for a surprisingly good meeting. People seemed to enjoy the challenge of the test and, more important, when went we went through and graded it, each item provided a jumping-off spot for questions and discussion. By the time we got through it, most of our meeting time was shot.

So support group leaders, you are welcome to use it, Clip'n'Save for the next time you are caught without a topic. It's my gift to you. And it comes with a question: what's your suggestion for fruitful support group sessions beyond booking some excellent speaker? What have you done that gets your group members talking and sharing? Lazy as ever, I await your replies, please post to the comments section or by email to dunlapshohl(at)Gmail(dot)com.



Oh yeah, the answers:


Three early signs of Parkinson’s Disease Are A: Slowness C: Loss of sense of smell D: Tremor predominantly on one side

Which symptom does not respond to treatment with sinemit? B: Loss of balance

True or false: PD is contagious ( ) F

True or false: The most noticeable effects of PD are caused by the loss of the neurotransmitter seratonin in the brain ( ) F

An rare side effect of some PD medications is B: Sex or gambling addiction

True or false: Voice therapy is useless in PD ( ) F

True or false : If I have PD, I should quit exercising ( ) F

The tiny handwriting of people with PD is called Micrographia

Scientists now believe that Parkinson’s is underway in the body (C) more than a decade before it is commonly diagnosed.

True or false: PD is a disease of the old ( ) F

A diagnosis of PD is a death sentence ( ) F

The part of the brain where cells are dramatically lost in PD is called the C: Substantia Nigra

DBS is the acronym for Deep Brain Stimulation

True or false: PD is curable with present medication ( ) F

True or False: PD is treatable ( ) T

Extra credit: PD is better than A: A sharp stick in the eye B: A sharp stick in the brain C: A dull stick in the eye

Parkison's Prognosications for the Southcentral Alaska Area

It's Parkinson's prognostication time again, in which your humble seer looks boldly into the future and divines what awaits those of us of the Parkie persuasion for the month of March. I see... a darkened room... a room filled with people staring intently at a screen... Yes! it's another Telehealth conference at the new oncology wing of Providence Hospital, room 2401 this Monday, the 14th of March at 1:00. The topic this go-round is PD and sexuality. The presenter is Kristoffer Rhoads, PhD, neuropsychologist For more info, call: 1-877-980-7500

Looking even farther into the mists of time, I see the fuzzy outline of a support group meeting coming up this Saturday, the 19th of March. I hope the topic for this meeting will be Tai Chi for PD, but have yet to hear back from our prospective guest. If the speaker falls through, we'll enjoy a presentation on... er, something else...
The mists of time are becoming opaque... my sight fails... that appears to be all that I have for you. I look forward to seeing you at these events. Until then, festinate forward!

Team Cul de Sac update: Cartoonists Begin Sending Artwork

Drawings from cartoonists are starting to come in to the cartoonist's campaign against Parkinson's Disease. The plan is to combine the drawings into a book to raise money for the Michael J. Fox Foundation. The effort is led by the indefatigable Chris Sparks, who was motivated by the PD diagnosis of his friend, Richard Thompson. Thompson is the creator of Cul de Sac, one of the brightest lights in the recent history of newspaper comics. Contributing artists are invited to use the characters from the strip in their contributions for the book. At left is a picture of one of the leading characters, Alice, as drawn by Thompson. (You can see my donation here) Preview the recently contributed art at the Team Cul de Sac blog.

UB the Brain Surgeon

As both an animator and a Deep Brain Stimulation surgery patient, my hat and bits of my scalp are off to Edheads for this interactive demonstration of how DBS is done.

This is not for the squeamish, but if you're not bothered by a little virtual blood you can pick up a virtual scalpel and scalp a virtual lawyer. Along the way, you'll get asked questions, "handle" high-tech equipment, and gain a better understanding of both DBS and why you weren't cut out for medical school. I was so enthralled I almost missed my scheduled meds.

This particular version of the operation is broken into different stages where parts of the operation are separated by days. Some doctors do all phases in one long operation, and correct me if I'm wrong, but I believe Dr. Philip Starr of UCSF has now managed to perform the operation without the necessity of waking the patient to check placement. But this is still pretty state of the art, and if you don't come away with a better general understanding of DBS, your tuition to medical school will be cheerfully refunded.

Winnowing the Web for Parkinson's Disese information? Here are some places to start (updated 5.6.2011)

The Web is a rich source of information and misinformation on Parkinson's Disease. While you can get the latest info by surfing the internet, you are at the mercy of the the information source. How do you assure it is reliable? I know of two attempts to assess Web resources that seem helpful and credible. No matter where you get your PD advice, before making any major change in how you handle your case discuss it with your movement disorders doctor. That said, here are two guides to PD resources on the World Wide Web.

Heather Trotter over at healthcaretechnicians.org has gone through quite a bit of trouble to seek out and evaluate various PD blogs on the Web, and has come up with a list of her top 49. How do I know she went to a great deal of trouble? Well, she found and read enough of "Off and On" to pick it as one of her favorites. This afforded her instant credibility with me, but you can size up her effort yourself by going here to check her picks.

The second example is the index created by the Parkinson's blogger Bibmomma. If you would like to see a round-up of PD blogs put together and screened by a smart and motivated patient, check out her exhaustive list here.

Where do I go to get my PD information? My doctor is number one, but here are some other resources I find useful. One hard-headed source is Viartis. This a reliable and up-to-the minute place to go. Not always encouraging, but always informative. You can find a link there that will allow you to get email updates when new posts go up. I also have a google alert set up that comes twice a day with a round-up of news from around the Web about PD. This is a source that picks up almost anything PD-related without judging its credibility so I bear that in mind when scanning it. For those that have had DBS or are considering it, I have found the yahoo DBS-discussion group to be invaluable. It is monitored and contributed to by well-informed and savvy people. There is a sign-up there for email versions. I like the digest, which keeps the flow of email manageable. Finally, I have high hopes for Dopadoc, maintained by Dr. Marshall Davidson. This is a new site run with considerable energy and great knowledge of PD lore. Be forewarned: Dr. Davidson is opinionated and not afraid to speak his mind. I do not always agree with him, but he is forthright and stimulating. (full disclosure: Dopadoc has run my stuff recently).

Certainly there are other Web sources of good (and bad) information. These are only the ones that I find most credible and most suited to my needs, standards and tastes. If you, gentle reader have some other source you find irreplaceable, I welcome your posted response.

UPDATE: Dr. Monique Giroux is working with the Northwest Parkinson's Disease Foundation to provide wellness information to Parkinson's patients. This is info on maintaining health and quality of life tailored to PD patients, and it is a trove of good advice. You can find it here.

Terrific tool to help with your on/off cycle

One of the joys of blogging is coming across a note like this in your inbox:

"I am the sister of a young onset patient, dxd about 15 years ago in her 30's. This past year, she started having real trouble with the on/off cycle. She and I wrote a web app for her to track her meds and her on/off etc... It worked great, her doctors loved it, and she was able to get some really useful interventions out of it.

We want to make it available free to the PD community. It is also an anonymous log in - so no worries about personal information getting into the wrong hands.

I'm hoping you will check it out, and if you find it worthwhile, write a little blurb about it on your blog."

The the site is here

I looked it up and it seems to be just what it purports to be, a nifty tool that people just like the rest of us (only smarter) have put at our disposal to make life a bit more manageable. Thank you Meg, may your ascent to heaven be carpeted with Parkinson's tulips