Who was the Ogre Who Says "No."? Well, for quite a while, he posed as me. This ogre alter ego crept into my character with patient stealth. The Ogre Who Says "No" set up shop in my head masquerading as the voice of reason. When someone had to play the heavy, the adult voice of delayed gratification, the Ogre was resigned but resolute, and stepped in.
He could be counted on to point out why we should stay home instead of going out, why we didn't need pets, or why we weren't saving enough. The Ogre phrasebook was full of lines like "Sure, but..." and "Do we really..." The Ogre was fluent in several languages because he only had to master one word. Nein, nyet, non, no.
The ogre was no dummy, and often had a point. The truth is that there are always good reasons to say no to just about anything. And that definitely includes saying "no" to the Ogre, who was a pain in the ass to live with. The Ogre had no joie de vivre, and without joie, vivre is thin gruel.
Can I blame Parkinson's for the coming of the Ogre? Probably not entirely. But the Ogre was not me. My Dad even noticed and was disturbed enough to contact my sibs asking if they had noticed that I had lost my "Ebullience." And given that the Ogre keeled over and died around the same time I got up to snuff on my Parkinson's medications, it's hard not to associate the two.
We buried the Ogre in a simple pine box. We never leave flowers. He wouldn't approve. But we do visit his grave now and again to honor him, and to reflect on his last words, carved on the cold granite of his headstone: "Carpe Diem".
Enigmatic message left on my answering machine: "This is Dave Henry in England. I'm trying to get some information about Parkinson's. I'll speak to you later on, OK? OK."
This was two weeks ago.
"Watson, what do you make of it?"
"The fact that you don't know a soul in the UK by that name suggests that this person came across you on the internet, perhaps on this very blog. Furthermore, the fact that he tracked you all the way to Alaska suggests intelligence, tenacity, and perhaps, urgency."
"Very good, Watson, But why would he need info from a guy in Alaska, when there are excellent resources in Europe? (for example here) And more disturbingly, why has he failed to follow up?"
"Great Scott! Do you suspect foul play?"
"Either that, or he's having a whale of an "Off" period."
"Blast it, what can we do?"
"We wait, and, one more question, Watson..."
"What's that, old man?"
"Why do we refer to it as an answering machine, when all it does is leave us with questions?"
I realize this is over the top, but even before my diagnosis, the question "How's it going?" used to plunge me into a swirling metaphysical struggle where the imperative to tell the truth collided with the imperative to be polite. Like most people, I went with politeness.
(We'll have a brief pause here while those of you with smart mouths hoot your disbelief. Are we through now? Good.)
This deference to courtesy came at a stiff personal cost. I had to bite back choice lines like "Oh, the usual quiet desperation, you?" Or another favorite, "Filled with fear and loathing." And let's not forget the cheery, optimistic "Clinging to sanity in a world gone mad."
The discovery that I have PD simultaneously validated those unspoken replies, and rendered them obsolete. A whole new army of unvarnished truths have to be beaten back. A few of my current favorites "Suffering an irreversible slow-motion brain injury, what's up with you?" Or, "Working hard, hardly working." Then there is the clinical "Oh, a little dystonic, bradykinetic, and depressed." Or when the meds are working "Adequately medicated, thanks!" Which lead me to what I have settled on as a reply that seems to satisfy both truth and courtesy: "Adequate, thanks."
For some reason, this usually elicits a laugh, but I have decided it's probably best not to ask why.
I know I am not alone in this. Anyone who has come up with an answer that solves this small but persistent problem in a tidy and honest stroke of inspiration is invited to post a reply.
Hello friends, we will have our regularly scheduled meeting this coming Saturday, March 15. There is no speaker, and I think it's time for yet another of our "We're the Experts" tip-swapping sessions. Let's all come with one trick or bit of info that you have found helpful in your struggles with PD that others may not know about. An example of the kind of thing I am thinking about is Lita's great tip that regular gum-chewing can help with speech and swallowing difficulties. I've been chewing gum ever since I learned this, and I have yet to shut up. Ask Pam.
In other news, efforts to bring up a motion disorder specialist to give some ongoing education classes to local medical professionals are coming along. We have a well-trained doctor who practices with the VA and a the neurological division of UC San Francisco who is eager to come. II put him in touch with the doctor who is in charge of "Grand Rounds" the education effort for multiple hospitals here. Stay tuned for further developments.
And while we're on the subject of bringing in medical expertise on PD, I am psyched to pass along this from the APDA Seattle office: The Washington Chapter of the APDA and Teva pharmaceuticals are still very interested in bringing patient education programs to Anchorage Right now, we have a tentative schedule – and I will firm this up as soon as more info is available. July 8, 9th – Lawrence Elmer, MD Neurologist from the Cleveland Clinic September 19, 20th – Susie Ro, MD Neurologist from Swedish Hospital
Looking forward to seeing all of you next Saturday,
An interesting project for me. While working on this drawing I noticed that his left eye seemed to say "I regard you with interest and professional detachment." His right eye seemed to say "I want to hit you so hard, your descendants will bear bruises for three generations."
One of the maxims of the news biz is that everyone has at least one great story to tell.
Here's your chance, courtesy of the American Parkinson's Disease Association:
New APDA Young Parkinson’s Web Site
Submit Your Story Could you be one of our new “Faces of Experience?” Have you been able to: effectively manage your symptoms, develop a particularly strong support system, participate in a clinical trial, become an advocate…? How did you do it? If you were diagnosed with PD at a young age, you and your family may be able to help others adjust to certain aspects of living with the disease by sharing your unique experience with them. Stories received may be featured on www.youngparkinsons.org or in other APDA publications. Please submit all stories with the subject line “Story Submission” and email to: email@example.com
Denial. That's a word that sums this freaking disease up. Speak? Denied. Nod? Denied. Smile? Walk? Run? Denied.
Michael Kinsley, PPWP(Pundit Person with Parkinson's) wrote a column for Time in 2001 explaining his choice then of denial as a strategy. Here is a sample:
"When I got the diagnosis eight years ago, I chose denial. If ever you're entitled to be selfish, I thought (and still think), this is it. So I see a good doctor, take my pills most of the time and go about my business. I couldn't tell you some of the most basic things about Parkinson's and how it works... If you fool yourself skillfully enough, you can banish thoughts of the disease but retain a liberating sense of urgency. It's like having a Get Out of Jail Free card from the prison of delayed gratification." Look here for his entire article.
The argument is creative, humane, beguiling, and wrong. Outdated may be a kinder way to put it. Consider this: It is now clear that there is a long latency period, likely over a decade, during which quiet damage occurs. Researchers believe that somewhere between 50-80 per cent of dopamine generating cells in the substantia nigra are kaput before symptoms emerge. So you've already had your denial period before you even realize there is a problem.
So go straight to panic, anger, and suffering.
Kidding! Kidding! Here is the good news. There is growing evidence that we can influence the course of the disease by means within our power. Exercise has some serious anti-PD mojo, Reducing stress and following the Mediterranean diet are looking promising. Denial will delay serious efforts on your part to act in ways that can raise and extend your quality of life.
Denial (and fear) can also make you slow to join a support group. This is a mistake. People at your local support group are PD experts in ways that the best doctor just doesn't have the experience to understand. And there is nothing they would rather do than share what they know with you,
Get over denial. You owe it to yourself and those that care about you. If you can buy some quality time by paying attention and taking care of your body, it's time earned. It may be uninspiring, but nobody lies on their deathbed thinking "If only I'd eaten less broccoli and not done so much exercise."
Welcometo all with an interest in Parkinson's Disease. This blog was to be an information clearinghouse for the Anchorage Parkinson's Disease Support Group, where meeting schedules, agendas, speakers etc could be found. It's still that, but has also become a sort of therapeutic hobby. So I invite you to join in the discussion and experience a little therapy as well. This will be as interesting as we as a community make it. Think loud and sound off!
Our Support group meets the third Saturday of each month at 3:30 in the afternoon. The meetings take place at the Anchorage Pioneer Home , 923 West 11th Avenue in downtown Anchorage on the fifth floor in the West lounge. You may call 350-9691 with questions about the group and meetings.
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The Knight Digital Media Center, judges of the Alaska Press Club's annual journalism awards selected The Alaska Parkinson's Rag for second place in the "Best Blog" category for 2008. Here is an excerpt of their comments:
"...Alaska Parkinson's Rag is many things: a community resource, a humor column, a science and medicine explainer. But it's also something that few blogs ever manage to be: addictive and gripping. Everything seems to work just right on this blog, and it is a powerful testament to what a person can achieve in this medium. "