Poets for Parkinson’s

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pfp-fox logoWho: Andy Weatherwax &
The Meeting House Poets

What: Book Launch & Poetry Reading proceeds to Benefit The Michael J. Fox Foundation for Parkinson’s Research

Where: South Church | 949 Main St | So. Glastonbury, CT 06073

When: Friday, May 23, 2014  |  6:30 – 8:30

Tickets:  $40.00 per person

For tickets go to  TEAM FOX Poets for Parkinson’s  >>

Welcome to BrainBug: Reports From Substantia Nigra

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My name is Andy Weatherwax. I am a retired business owner, a poet, musician and sculptor. And I have a BrainBug.

This site, BrainBug.com, will serve primarily as an outlet for my creative work. If you dig in a bit you’ll notice that much of my work, these days, is inspired by Parkinson’s disease (PD), with which I was diagnosed in 1999. That said, this site, BrainBug.com, will serve primarily to raise awareness of PD through my work – poetry, music, essays, and so on.

I hope you enjoy your time at BrainBug.  Metta.
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Parkinson’s Treatment Can Trigger Creativity

Parkinson’s experts across the world have been reporting a remarkable phenomenon — many patients treated with drugs to increase the activity of dopamine in the brain as a therapy for motor symptoms such as tremors and muscle rigidity are developing new creative talents, including painting, sculpting, writing, and more.

Prof. Rivka Inzelberg of Tel Aviv University’s Sackler Faculty of Medicinefirst noticed the trend in her own Sheba Medical Center clinic when the usual holiday presents from patients — typically chocolates or similar gifts — took a surprising turn. “Instead, patients starting bringing us art they had made themselves,” she says.

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Path of Boundless Compassion

Deepen your Zen Practice and Understanding Though the Exploration of Shin Buddhism with Mark Unno

The BuddhaSaturday, April 26 9:00 am – 4:00 pm
Greater Boston Zen Center
288 Norfolk Street
Cambridge, MA.

Suggested Donation
$20 – $40 per person

Join us for a day of exploration into the Shin tradition of Buddhism, the practice of living a Dharma life that emphasizes entrusting ourselves to the realization of boundless compassion. This special program of dharma talks and practices as well as group discussion will cover a variety of topics including the following:

  • The fundamentals of Shin Buddhism—key teachings, chanting, bowing, and deeply hearing the Dharma.
  • The primal vow and the Bodhisattva vows—What is the true nature and source of the vows and how to we make it come alive in our daily lives?
  • We’ll look at some of the leading Zen and Shin teachers including Dogen, Ryokan, Honen, and Shinran,the founder of Shin Buddhism. We will discover surprising connections and the historical context of their time. What can we learn that can inform our lives in the 21st century?

Bermuda to Newport One Last Time

This post and the ones to follow, are from my journal chronicling my last off shore sail, from Bermuda to Newport. My good friend Jay got me into the sport of short-handed (a crew of one or two) off-shore sailing. After my first race I was hooked! I raced in the New England Solo/Twin, a single-handed race from Newport, around Block Island, around Maratha’s Vineyard, and back to Newport; and the Bermuda 1-2 which is single-handed from Newport to Bermuda and two-handed from Bermuda back to Newport. I was totally into it!

There are few activities that put you in the moment like open ocean sailing alone.

It had been four or five years since my diagnosis of Parkinson’s disease, and my symptoms were now for all to see. My “off” states were on the rise. Let me explain…

The initial symptoms of Parkinson’s disease—resting tremor, muscle stiffness, slowness of movement—are quite effectively treated with a drug called levodopa, which the brain coverts to dopamine,  and a class of drugs called dopamine agonists, which activate dopamine receptors in the absence of dopamine. They are usually the first line of defense against PD, and are very good at improving and controlling these symptoms for several years.

Over time, however, patients start to develop motor fluctuations, the result of variations in the individual’s response to levodopa. Motor fluctuations oscillate between “off” times, a state of decreased mobility, and “on” times, or periods when the medication is working and symptoms are controlled. It is estimated that 40 percent of Parkinson’s patients will experience motor fluctuations within 4-6 years of onset increasing by 10 percent per year after that.

These fluctuations are not limited to the motor symptoms of Parkinson’s. Also affected are the non-motor symptoms, such as sensory symptoms (e.g. pain, fatigue, and motor restlessness); autonomic symptoms (e.g. urinary incontinence and profuse sweats); and psychiatric disorders (e.g. depression, anxiety and psychosis). These symptoms are more disabling than motor changes in as many as one third of fluctuating patients.

So, my “off” states were on the rise and I was  flat out. I had just launched BrainBug (v2.0), a full service digital marketing consultancy and I was balls-to-the-wall (such an odd phrase). I had consulting engagements in place with IBM, MetLife, Priceline and WebMD. On top of that I had just begun work on the technical and UE (user experience) design for Yahoo!’s paid search program. I was swamped.

So why, my wife Josa wondered, why the heck would I jeopardize these relationships—relationships that in some cases took years to cultivate? Why? Why risk it? These were great companies.  Big companies with deep pockets! And they were not small engagements.  There were deadlines looming and it was just me in our spare bedroom (Shhh. Don’t tell anyone! I may have over stated the size of BrainBug just a bit ;-)   Why,  in the middle of my most successful (IE: lucrative) year, would I drop everything l to go sailing?

The simple  answer:  I’m an idiot!

I’ve never been one given to consequence. My wife is a saint to have put up with me all these years.  Looking back, I can see clearly now how much worry and stress I routinely  placed on her plate every time I’d open my mouth and  announce some new venture or adventure. Admittedly, some of my decisions have been questionable. I may be an idiot but, I am an idiot who realizes that sailing is second to none…uh, well second only to music, and maybe mountain climbing… No, sailing is it! Music is it too…

What I’m trying to say is I’m addicted to feeling alive! It was four or five years since my diagnosis and I was really slowing down. Parkinson’s disease was winning and my sailing days where numbered. Especially the blue water, off-shore, shorthanded, shake you by the lapels, driving rain and howling wind type of I’m alive sailing!

So, when my good friend Jay called and asked if I had one more passage in me, I jumped at the opportunity.

I now had to inform my clients. If you’ve ever worked with large companies you know that they can get lost in a world where what they do or make, is the most important thing ever. Each deadline is taken very seriously, as if they were surgeons and it was life-or-death. I understand the power of this delusion, so I have two simple rules when it comes to account management:

  1. Communicate often and honestly, even if there is nothing to report. Email doesn’t count. Let them here your voice.
  2. Under promise and over deliver. It’s far easier to take your lumps up front. When the client says I need it if four weeks and you say it will take five, they might kick a bit. But when you deliver in three and a half weeks you’re golden.

Do this and you’ll be in their good graces.

I called each client and despite some concern the overall reaction was “Go for it!”
And I did.

So, on June 3, 2003 I flew to Bermuda. We were to set sail the following day. Jay and I on his Doug Peterson Metal Mast 36′. I will never forget this passage. I will be posting my journal from this passage in the coming days.

 

iI am addicted to feeling alive