Monday, June 3, 2019

Hungry? Hang in there, The Ever-Festive APDSG SUMMER POTLUCK Approaches!

Summer, as we know it here in Anchorage-By-The-Sea has begun, and who knows, by the time you read this, it may already be over! NEVERTHELESS, The Anchorage Parkinson"s Disease Support Group will hold its Umpteenth Summer Potluck Saturday the 15th of June, 3:30pm. What to bring: whatever you think would be an appropriate dish. It's a pot luck, let's test that "luck" thing. What not to bring: consider leaving your squirt guns and leaf blowers at home. Whom to bring: family and friends, anybody involved with Parkinson's. Where to Bring It: Our home, the Singing Fiddle Ranch is located at 9601 Elmore Road. To get there head for the intersection of Abbott And Elmore roads, in bucolic South Anchorage, on the Lower Hillside. Once at the intersection, go South on Elmore about 1/4  mile,  begin a short steep climb up a hill. About halfway up, look for our lonnnnnng driveway on your left. You should see the driveway just after the end of the neighbor's  chain-link fence. Proceed east, down the lonnnnng driveway, find ample parking near the end and at the end. Park. Exit your car, carry copious quantities of delicious food to the West lawn, where we will be whooping it up in typical rowdy Parkinson's style until the wee hours of Sunday morning or until 6:00 pm, whichever comes first. In case of inclement weather, we will hold the festivities inside.The definition of "Inclement" will be the prerogative of management. So pray for clearly clement weather thus avoiding any unseemly quarrels due to close judgement calls. I think that covers it, I hope to see you there!

Your Benevolent APDSG Ovrlord,

Peter

Friday, May 17, 2019

No Meeting Saturday, May 18, Meetings to resume in June

Hello friends, There will be no meeting of the Anchorage Parkinson's Disease Support Group this Saturday, May 18, as I am still down South. But meetings will resume in June, with our annual Summer Potluck. More info on that to come. I hope you all are doing well and look forward to seeing you in June!

Best,

Peter

Thursday, April 18, 2019

No Anchorage Suppport Group Meeting this Saturday, April 20

Hello all, this is a reminder that I am snowbirding in Washington State, so we have no formal meeting this Saturday. The usual space, the Tundra Lounge is still reserved in the Pioneer Home, so if you wish to meet informally and just chew the PD fat, that's fine. I'll be down here through the month of May, so our next official meeting will be the Summer Potluck in June.

Festinate forward,

Peter

Tuesday, April 2, 2019

Mash-up: Parkinson's and Poetry Month



Yes. it's Shake-Speare, You've been warned!

It’s Parkinson’s Disease awareness month. It’s also Poetry Month. Furthermore it’s the cruelest month, according to Poet T. S. Eliot. (Who did not have Parkinson’s) So what does this all add up to? Time to write cruel Parkinson’s poetry, of course! 8, count ‘em, 8 PD limericks  here 

Saturday, March 23, 2019

Good-bye, Susan, Another Member of Our Support Group Departs

​I am sorry to pass along the word that another beloved member of our support group, Susan Wong, has died. Below is a note from her daughter, who was with her to the end. Susan was not a person to whom illness simply happened. She was never a bystander in her own care. She looked for ways to cope and was there to help others, even though they contended with less ferocious adversaries than she. More than one member of the support group mentioned to me that Susan was an inspiration and role model. I add my name to that list.



Dear friends –

Mom died this morning. Before we gently let go of her hand and watched her go, we provisioned her journey with our most profound love and gratitude. Enough, we hope, to sustain her for eternity (or at least until we meet again and can replenish her supplies).
 
These past months, we were given the gift of time together, during which we shared in deep conversations about love, life, and death. We read books, listened to good music, wrote, laughed, cried, reconnected and reminisced. We had the rare and frightening advantage of knowing that time was running out, and I am proud to say that we took advantage and did our best not to waste it.

Thank you for the letters, emails, texts that you've sent. I read as many of them as I could to Mom in her final days. In the coming days, I hope we can still share with one another even a few stories and pictures from her spectacular life. An overwhelming flood of which are already brimming in our own minds, as well as our inboxes. In one remembrance, an old friend wrote to me this week saying that it seemed she had lived many lives within this one lifetime. As I reflect, I agree that this indeed seems true, despite the fact that it was also cut painfully short. 

Right now, in this moment, I feel like I could fill volumes describing her life, her character, her dreams and accomplishments, her hardships, even her missteps and imperfections (maybe one day I will). But for now, I will just say that it has been an absolute honor and privilege to share in this life with her. She shaped for me a magical and inspired worldview and I will spend the rest of my life endeavoring to embody and to raise my child with the values she instilled. 


SLEEPING IN THE FOREST by Mary Oliver
I thought the earth
remembered me, she
took me back so tenderly, arranging
her dark skirts, her pockets
full of lichens and seeds. I slept
as never before, a stone
on the riverbed, nothing
between me and the white fire of the stars
but my thoughts, and they floated
light as moths, among the branches
of the perfect trees. All night
I heard the small kingdoms breathing
around me, the insects, and the birds
who do their work in the darkness. All night
I rose and fell, as if in water, grappling
with a luminous doom. By morning
I had vanished at least a dozen times
into something better.
With all of our love to each of you,
Shina

Friday, March 15, 2019

March Support Group Meeting Cancelled

Hello friends, I am sorry to announce that there will be no meeting of the Anchorage Parkinson's Disease Support Group this weekend. I am not in town and was unable to talk anyone into hosting. If you wish to meet informally, the space at the Pioneer Home is reserved and should be available. best, Peter

Friday, March 8, 2019

Inattention and Parkinson's: Walking on the Knife Edge

The following is from my blogging gig with the Northwest Parkinson's Foundation, republished by special arrangement.

A sudden stinging pain. A sickening realization: the car door was slammed on the fingers of my left hand. An instant of disbelief, how could this be happening? A struggle to beat back panic that grew with each nanosecond my captive hand was clamped in the merciless metal jaws of the door. A feeling of helplessness when it became clear I could not free myself. An urgent plea to my wife to OPEN THE FREAKIN’ DOOR!!!

No matter how many layers of bubble wrap you cover yourself with, no matter how carefully you choose your seat, no matter how deliberately you plan your route, there will be a moment when you let your defenses down. You might be too tired to notice the warning signs. You might be distracted by an attractive nuisance. Perhaps it plain may not occur to you that leaving your hand in the path of a door that might suddenly slam shut is a recipe for a pain sandwich. Or you may simply forget to keep your guard up, and then boom!
You are rudely reminded of you vulnerability.

This is true of anyone, but the consequences of inattention are more grave if you already have a serious condition like Parkinson’s Disease. Fall from a moment’s distraction, and you may break a hip. Then it’s off to the hospital, which as my father (a doctor) was fond of pointing out is no place for a sick person. Next thing you know you’re fighting for your life with an infected bed sore, and they’re measuring you for a coffin.

The thing is, not only is it impossible to avoid the vagaries of life, the random disasters of the universe, and plain old bad luck, even attempting to avoid them requires a level of paranoia that most of us can’t sustain. I don’t want to live a life of constantly sizing up situations for worst-case scenarios, and waiting for asteroids to drop out of the sky. Living in a cringe can lead to all kinds of leg-cramps, and besides, it’s exhausting. If I’m going to be exhausted, I want it to be from spending too much time on my bicycle, or from staying up too late playing music with friends. I sure don’t want to waste my time on the weariness that comes from hand wringing 24-7-365.

And speaking of wringing hands, my wife finally reached the release for the stubborn door that refused to relinquish my stinging fingers. I jerked my hand free, and gave it a close, cautious inspection, fearing the worst. The inspection yielded the joy of finding my fingers were still attached to my hand, and even more miraculously, were apparently still quite operative, having somehow escaped serious damage in spite of deep pinch marks. They have gone on to stage a complete recovery.

So it was a reminder. Bad things will happen unforeseen, painful and unpreventable. But maybe we are not as fragile as we think, Parkinson’s Disease and all. With Parkinson’s, I fall far more often than I ever thought I would. And it can be scary and consequential. But along with that, there is something else also unforeseen. I may fall more often than I would without PD, but I get up more often, too.

Wednesday, February 20, 2019

Research Opportunity: Florida State Questionnaire on Satisfaction With Parkinson's Treatment

Research opportunity: If anyone is interested in helping a Florida University student who is collecting information on patient and care giver satisfaction with Parkinson's treatment, they can do so by filling out the questionnaire found here https://ufl.qualtrics.com/jfe/form/SV_ebxUFHZm8SdDCKN

Tuesday, February 19, 2019

Rest in Peace, Sherri Hadley, A Woman Who Did Not Go Quietly

Sherri at last Summer's Potluck
Hello friends, It is my sad obligation to notify you of the loss of one of the members of our support group, Sherri Hadley. This news comes from her friend, Michele Champion, who wrote yesterday, "Sherri Hadley died peacefully last night. She was not alone and several of us had been keeping vigil for many days. She was not in pain. I know that the support group was very important to her because when she began to drop activities, she always wanted to come to the support group. You all meant so much to her. I will thank you,  as I know she would, for the love, acceptance and support she felt from all of you.

A memorial service will take place later, either March or April. I will keep you posted."

Sherri led a vigorous life before being afflicted with Progressive Subnuclear Super Palsy, a little-understood disease akin to PD but far more virulent. As a civil engineer, she traveled to remote areas  throughout Alaska overseeing projects to improve the lives of locals. As an Old-Time fiddle player she was known as one of the finest practitioners of that genre in Alaska. As a hard-headed, logical woman, she agreed that the celebration of her life should be held while she was alive, so she could enjoy it. As I wrote three years ago " In one of the neatest tricks since Tom Sawyer attended his own burial service, Sherri Hadley went to her own celebration of life. The celebration took the form of a bittersweet and raucous Old-Time Fiddle jam. It was attended by musicians from across the state ... Sherri did not retreat into denial. Instead she made a memory for herself and for her large circle of friends that will be a comfort to all who took part. The memory I will take with me is of a woman brave enough to not let imminent death rob her of joy. Bravo, Sherri!"

I was told later that it was the biggest Alaska gathering of Old-Time musicians in living memory. 
There is video of the celebration here

You can read more about the party, and about Sherri in an article that appeared here in the Anchorage Daily News.

Sherri bore her difficulties with courage and grace. Her circle of friends was amazing, and a testament to her qualities as a person. She lived a unique and beautiful life, and it is good to know she had her friends at hand to see her through to the end.
Bravo Sherri, indeed.