Friday, June 1, 2018

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

Wednesday, May 23, 2018

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.

And here comes a new one all shiny and bright! This

Thursday, May 10, 2018

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.

Tuesday, April 24, 2018

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.

Friday, April 20, 2018

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

Saturday, February 24, 2018

Can You Spot the Parkie?

One of the three friends depicted below has Parkinson's. Your challenge: Identify the correct skier!

Monday, February 19, 2018

New Installment of the PD Pundit up now


Hey friends, the PD pundit is pontificating on Parkinson's again! You can see the latest installment, the Holy Grail of Parkinson's here

Thursday, February 15, 2018

Support Group Meeting Saturday, February 17: Rock Steady Boxing!

Hello friends, we will have a boffo meeting this Saturday with a presentation on a new Rock Steady Boxing program that is forming in Anchorage This is one of the most  popular PD exercise programs, so it's exciting to have it happening here in Anchorage. See you at 3:30 at the Pioneer Home, This Saturday!

Thursday, January 18, 2018

Support Group Meeting Alert (This is NOT a Drill!)

Hey Everybody, It's a meeting alert! We will have our regularly scheduled meeting this Saturday, January 20th, 3:30 at the usual place, the Pioneer home 5th floor West lounge. We will have a parkinson's pop quiz to start the new year right, so bring your brains, or your gut or whatever you use to do your best thinking. (Magic 8-balls, ok too!)

see you soon!

Peter

Tuesday, January 9, 2018

A few notes on falling


Back when I was first diagnosed with Parkinson's Disease, I had a fear of falling. There were two things I especially did not relish about the idea that it would become a part of my modern lifestyle. #1 was pain, and the possibility of a fall leading to broken bones, leading to becoming bedridden, leading to bedsores, leading to infection, leading to death. #2 The fact that, back then (17 years ago!) there was nothing I could find known to improve falling. As a person with Parkinson's, you were just doomed to fall. Get used to it.

This was very frustrating, and horribly demoralizing. And we now know, not true. Yes, you will fall more if you have PD, but there are now activities that can improve your balance, stopping falls before they happen. I did a two-part infocomic on this topic, you can find the first part here, and the second here. Walk tall, don't fall. That's all.