Meeting Saturday, Nov. 17,

Hello friends, Yes, we will have a meeting this weekend, and yes, in a break with recent practice, I plan to attend. Radical, I know. On the agenda for this gathering, we will catch up on the replacement of yours truly as august  leader and Grand :Poo-Bah of the APDSG. Second, The Seattle branch of the American Parkinson's Disease is in the early stages of planning a PD symposium in Anchorage next fall, and they would like to know what  topics you would like to see covered, so we'll talk about that, and whatever else is on your minds. Note: we now meet in the Pioneer Home EAST lounge, so instead of making a left when you exit the elevator on the 5th floor, make a right,

See you soon,

Peter

PD and Horse Sense, a Post from The Northwest Parkinson's Community Blog

Here is a reprint of a recent post I wrote for the Northwest Parkinson's Foundation Community Blog. You can still have adventures even with Parkinson's.

How did I spatter all this horse manure on my freshly laundered clothes? My wife was away for an extended cross-country adventure. I remained behind to care for the homestead, including her two horses. This may seem like a heavy responsibility for a guy with Parkinson’s, but as a life-long Westerner, I have a natural way with members of the equine set.

My assignment was simple. I was to make sure the horses got enough water and hay to remain alive and reasonably happy until Pam’s return. The goal changed, as goals will over time. After two late-night escapes and one brazen, full-daylight jailbreak, the aim became my survival of the horses rather than their survival of me. This meant luring them into the pole shed for the evening so I didn’t have to worry about them testing the fence while I snatched what we cowboys call “a little shut-eye.”

The traditional way of rounding up our two-horse herd is to tempt them with that irresistible, mouth-watering delicacy, hay. We keep our hay in the hay shed downhill from the pole shed where the horses shelter at night. You have to take a load of the itchy stuff up the hill while the two horses gang up, and try to rip mouthfuls of it away from your arms. If they pull enough hay out on the way uphill, they will be maddeningly slow to enter the shed as they Hoover up the bits that have dropped.

To avoid the delay caused by their marauding hay raids, I have found that the most effective tactic is to run as fast as possible up the hill with a surprisingly heavy payload of hay and fling it in a mighty arc to the back of the stall, with the horses in hot pursuit. Then I secure the gate while they happily mow through their high-fiber meal. This works great in theory, but in practice much depends on your execution.

The evening run began well. I burst from the sliding door of the hay shed, rammed it shut and hustled up the hill through a light rain, one step ahead of the ever-hungry horses. But disaster struck just short of the pole shed gate when my boot tip caught in a heavy mat. I sprawled chest-first into the ground. Luckily, the impact was softened by the hay I had been carrying, along with a cushion of wet manure the horses had thoughtfully deposited earlier.

I scrambled to my feet and brushed as much hay into the pole shed as I could divert from the two quadrupeds, who obligingly wandered into the shed with minimal encouragement. I latched the gate and looked with dismay at my jeans and coat, now besmirched with horse dung and clinging wisps of hay.

Bitterly I cursed my fate when my self-pity was interrupted by this thought. “You are a 59 year-old man with Parkinson’s, diagnosed 16 years ago, who just ran up a hill carrying an armload of hay while being chased by half-ton ravenous beasts, and you’re upset over a little horse crap on your pants? The fact that you could do any of that is worth celebrating, don’t miss the magnitude of this victory just because there is a bit of dung on it.”

So, rather than cursing my lonely fate I decided instead to embrace it, manure and all. Instead of being miserable, I took pride in my crap-covered accomplishment. It's true that, as a Westerner, I have a way with equines—and as a person with Parkinson’s, I am a hoarse whisperer.

Pete's Parkinson's Portraits, Alan Alda

Peripatetic Pete, Looking for a Volunteer

Greetings Parkinspeople and those who love them, I'm looking for a volunteer to host our next two support group meetings as I will be away visiting family far, far from Alaska. If you can attend the meetings, greet newcomers and help foster a discussion about Parkinson's Disease, this is the volunteer opportunity you have been waiting for. Well wait no longer! Take that first step into the Parkinson's limelight! To quote that well-known philospher Dr. Ferris Bueller "Life moves pretty fast you don't host a Parkinson's support group meeting, you could miss it." So who wants this once-in-a-lifetime chance? Please contact me if it's you. Bueller?... Bueller?....

​In other news the  PD and speech group led by our intrepid  Ann Ver Hoef  will meet soon. here is Anne's message about that: ​

I hope this finds you all well.  The summer is flying by, as usual.  Never enough time to get outdoors….but I am heading out for a backpack trip in the Wind River Range in WY and be gone Aug 2-12. 

We have our next PD Communication Group on Monday, 8/13/2018 from 3:30-5:00.

We will meet in the Ivy Room, downstairs on the First Floor at AK Regional Hospital.  This is in the downstairs of the regular hospital building.  If you park in the “back” of the building, and come in the tall atrium entrance, you head to the left down the hallway and there are the Ivy rooms.

Be prepared to share some of your summer experiences! WOOOHOOOO!

And this just in... Alan Alda says he was diagnosed with PD three and a half years ago, and that he is doing fine.

Pete out (way out!)

Our July Support Group Meeting: Annual Parkinson's Pinic

 AN INVITATION 

Summertime, and the livin' is easy... unless you have Parkinson's Disease, in which case the livin' is difficult, no matter what the season. It is however, easier than the livin' in Winter, and that calls for a celebration. But how to acknowledge this season of nature's bounty and torrid 80 degree heat? I know, let's have a potluck! It's fun, low-stress, and more important, it's a tradition. So, without further hemming and hawing, throat clearing and fidgeting, preambles, introductions or brief remarks, I am happy, proud, pleased, pumped, excited, psyched, thrilled to the gills and grateful to announce the social event of the season, The Annual Anchorage Parkinson's Disease Support Group Official Summer Picnic Potluck Pig-Out (TAAPDSGSPPP-O) will take place Saturday, July 21, 3:30 p.m. at the ever-popular Singing Fiddle Ranch, a.k.a Pete and Pam's (Lower) Hillside Hide Away, or, more simply "Our House".

 WHAT TO BRING 

Who am I to tell you what to bring? it's a freakin' POTLUCK, for the love of mud. You bring whatever you would like to share, and we will silently judge you for your taste in, well, food. We will provide bread, cold cuts, cheese, cups, festive paper plates, copious napkins and flatware, some starter beverages and a warm welcome. You supply the amiable company and the rest of the edibles. What could possibly go wrong, aside from light head injuries like last year?

If you are really stuck on the question of what to bring, consider foods that are healthy for those of the Parkinson's Persuasion. See my blog post about a Parkinson's approved diet here

 HOW TO GET THERE 

To find our house is simplicity in itself. Go by your chosen mode of transportation to the intersection of Abbott and Elmore roads. (near Service High) Head South on Elmore road to find our place, 9601 Elmore Road, about a quarter mile on. Look for the long driveway to our single story ranch-style house with a green metal roof, on your left about halfway up a small hill, just past a largish house with a chain link fence. We have ample parking, so come on over! Questions? (907) 350-9691.

Parkie Prophet Predicts Panoply of PD-related Summer Meetings

Who can say what the future holds? Well, good news, I can! At least as far as next two meetings of the distinguished APDSG are concerned. Our upcoming meeting will be held June 16th. We will have a presentation on hallucinations and delusions in PD from Gail Howshikowa. Gail is a drug company salesperson. She works for the company that makes  NUPLAZID ® (pimavanserin). Touted as "the first and only medication approved by the U.S. Food and Drug Administration (FDA) for the treatment of hallucinations and delusions associated with Parkinson’s disease pychosis." 

 

The wise and moderate Ron Broom and I have a disagreement about people giving presentations on subjects they have a financial stake in. Ron objects to such presentations on the grounds of conflict of interest. I agree this is true, they have a conflict. But I also think if you know that the presenter has something to sell, you can size up what they have to say and judge for yourselves.  And I believe it will make for  a good meeting topic. So that is  our June meeting.

What is happening on our July 21 Meeting? It's the Summer potluck! This promises to be the PD event of the season. For one thing,  it will be held away from our regular meeting place. Instead the potluck venue will be my house. Directions to follow.

What to bring? I say bring whatever you like. It's a potluck, after all. If you need more guidance than "whatever", how about bringing something that is particularly apropos to a healthy anti-Parkinson's diet? You can find out what foods are good for people with PD here. We'll meet to eat at our usual time, 3:30. Looking forward to seeing you all. If you have any pull with whomever is in charge of the weather, put in a word for Sun in Anchorage

on July 21!

Thus spake Peter, Supreme Grand Exalted Parkie

Return of the Return of the PD Pundit

Scarcely two weeks have gone by since I last posted the appearance of a new PD Pundit comic. And now here comes a new one, all shiny and bright! This one is about the necessity of adapting to our new reality, and how to  remake your passion in a way that is harmonious with your limitations. You can find it here.

Return of the PD Pundit: Conveying Visually What it Feels Like to Have Parkinson's

Hey folks, a neo-graphic experiential Parkinson's opportunity shared here! (Translation from Jargonizer: New comic showing how having Parkinson's Disease feels from the inside). For those of you who prefer not to know, or who already know, here's a link to a great spoken word piece about escaping from jail by Tom Waits.

Lies that Parkinson's Disease Told Me

In addition to the blogging I do here, I do  a monthly post for the Northwest Parkinson's Disease Foundation. From time to time I re-post work from there here. This is a favorite from December 2016. It's called Lies That Parkinson's Disease Told me.



Yes, I should have known better than to trust Parkinson’s Disease. PD is not our friend. It spends its time and energy devising ways to mess us up. There seems to be no part of the human experience beyond the reach of this tireless troublemaker. I know this.  So I should have been on my guard. But I believed when it whispered the following lies in my ear.

1.) The good part of your life is over. It’s time to get up and start the bad part. 

While it’s certainly more difficult, expensive, and mentally and physically painful to live with Parkinson's, the good part of my life did not end with my diagnosis.  Balancing that formidable list of downsides is the benefit I have reaped as a volunteer in the PD community here in Anchorage. Also, more than a counterbalance is the love and support that have come from family and friends. Over time, it became apparent the everyday joys of life may become rarer, but don’t vanish because of Parkinson's Disease. Of course there are good days and bad days, but guess what. It was that way before you got sick, too. (And, yes, Parkinson’s stole that “Good part of your life over, bad part begins” line from the movie “Broadcast News”. So PD is a liar and a thief.)

2.) Stay away from support groups. They are full of scary, sad people and will depress you.

I bought this lie without hesitation. And OK, there is something scary about seeing people confined to wheelchairs, using walkers and shaking like aspen leaves. At first. But just as “to  understand is to forgive” to get to know the person behind the tremor is to lose fear of them and their disorder. And there are people in our support group who handle the disease with courage and grace. These patients light the way to dealing with PD with dignity. You can deal with it too. Just follow their lead. Another less obvious benefit is the chance to witness those who don’t handle the disease so well. As the saying has it, “Every man is your teacher” You may learn from the graceless how best not to approach the disease as much as you learn from the graceful who do it well.


3.) Your balance will go bad. There is nothing you can do about it.

I certainly have lost a good bit of my ability to balance. And freezing as I carry in the groceries has led to frightening (and painful) falls. Furthermore, I expect I will fall more frequently in the future. But it has been shown that there is something you can do to mitigate the loss of balance: exercise! Most specifically, it has been found that those who do yoga and Tai Chi may improve their baseline balance ability significantly. This tends to confirm a suspicion of mine that some of the fallout of Parkinson’s comes from disuse, rather than disease. An essential part of coping with this motion disorder is to keep moving.

But what was worse than the lies Parkinson’s told me? The lies I whispered to myself. The lie that life with a chronic, disabling disease was not worth living. The lie that I am somehow less of a person because I am ill. To live is to be in transit somewhere along the spectrum that goes from good health to bad health. All of us will sooner later or later find ourselves at the far end of that journey. In our ultimate frailty,  we are all equal. The most important things in life, we still all share in common.

What Has Having Parkinson's Disease Taught You? Meeting Friday April 21

Hello friends, We have a meeting coming up this Saturday at 3:30 on the fifth floor of the Pioneer Home in glamorous downtown Anchorage.  To get a different angle on PD, my hope is to have a discussion centered around the question "What is something that I learned from having Parkinson's Disease? " So come prepared with ideas or make something up on the spot, but be ready be eager, be enthused to talk about your take on Parkinson's Disease. Thanks,

Peter