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.

Friday, December 29, 2017

Coming THURSDAY, January 4th, a Special Edition of the Anchorage Parkinson's Disease Support group: Connie Carpenter Phinney on Care Partnering

We will have a special edition of the Anchorage Parkinson's Disease Support group on THURSDAY, January 4th. Our speaker will be Connie Carpenter Phinney of the Davis Phinney Parkinson's Foundation. Connie has 17 years of experience as a care partner with her husband Davis Phinney. Both Phinneys were champion cyclists ​in the 1980's with Connie winning a Gold Medal at the Los Angeles Olympic Games. According to the entry on her in Wikipedia, she "is an American retired racing cyclist and speed skater who won four medals in World Cycling Championship competitions (both road and track cycling) in the late 1970s and early 1980s. She also won the gold medal in the cycling road race at the 1984 Summer Olympics in Los Angeles,[1] as well as twelve U.S. national championships. She remains the youngest American woman to compete at the Winter Olympics.[2]" Connie will share her experiences and tips for care partners in an hour-long ​presentation that will include time for questions. This special meeting will be at 4:30 on Thursday, January fourth, in our usual meeting place, the Anchorage Pioneer Home, 5th floor West lounge. I hope to see you there!

Peter

Wednesday, December 20, 2017

Closing the Year on a High Note. International Cooperation to Help People with PD

Okay, I admit the "International Cooperation" heralded in the clickbait hed above was just me and one French guy, but dagnabbit, we must start somewhere! It began when with a note from Monsieur Jean-Louis Dufloux seeking permission to use an old but redoubtable cartoon I drew (Yes, it's this one.) to illustrate a chapter of the manuscript he is finishing on Parkinson's Disease.

A bit of banter was followed by my sending a sample illustration based on his summary of a scene from his manuscript. The drawing elicited this request from my new BFF (Best French Friend) M. DuFloux:

"Hello Peter,

If possible for you, I would like to have four more drawings :

the use the repelling aspect of PD as a political weapon. My chapter illustrates the attack on Hill
ary Clinton by Donald Trump’s team during the last Presidential vote
the impact on well-being of l-Dopa at the beginning of the disease, the “honeymoon effect”
something about all the research made by teams in the world, the access to this content through internet, giving hope or disappointment
the impact on sleeping and the terrible wake up.

Tell me if you need more information.
Is it doable?
You can write dialogs, I will translate.
Thanks"
 
As it turned out, it was possible. The drawings appear below. 
 



Sunday, December 17, 2017

Monday Meeting with Speech Pathologist Anne Ver Hoef UPDATE

Hello friends, Anne Ver Hoef who is coordinating the new speech  practice meetings for people​with PD asked me to pass along that the next meeting, Monday Dec. 18 at 3:30 will be held in classroom 1, NOT the Ivy room.  Classroom one is downstairs in the bldg closest to Airport heights Dr. in the AK Regional complex.​ This should be a helpful activity that aims at preserving and conserving our ability to communicate, which is key to quality of life. Anne is the bee's knees, so this meeting is highly recommended.

Tuesday, December 12, 2017

The Parkinson's Forecast for Anchorage and Environs

Heads up fellow PwPD. We will beat back the darkness Saturday, Dec 16 by potlucking like we don't care that it's too dim to tell what exactly is on our plates. Not that we can taste anything, anyway, given that our sense of smell is shot. We'll eat, watch the lights come on across the Anchorage bowl in the early winter gloaming, and all sing "Jingle Bells" if I have anything to say about it. I'll bring something main-dishy, scads of festive plastic utensils, and charming holiday-themed paper plates and cups (although the theme of the holiday may be Halloween, I'm not exactly sure what I have on hand.) You bring whatever you think goes well with light and heat deprivation. You could consider bringing something known to be particularly good for People Packing Parkinson's, blueberries, vegetables rich in color, leafy greens and, God bless 'em, tasty wild-caught Alaska salmon!

Those in need of more distraction from the bleak mid-winter (and that would be all of us) should consider going to voice pathologist Anne Ver Hoef's gathering for those who wish to practice speaking to strengthen their voices. If you didn't get the memo, here is the gist:

The second meeting of our PD  Conversation Group is planned for Monday, December 18th at 3:30 at Regional Hospital , Conference room 1.

Some activities we discussed doing at this meeting are:

Holiday singing

Script or play reading

Chinese auction  

read and discuss news articles

The goal is to develop and improve our speaking and conversation skills in a supportive group  of folks who all share the challenge of "Living well with Parkinson's"


And  we are setting up a special meeting JANUARY 4TH, on Care partnering for PD. The Presenter will be Connie Carpenter Phinney of the Davis Phinney Foundation. Connie won a gold Medal at the Los Angeles Olympics in bicycling and competed at the Olympics as a speed-skater, too. But what qualifies her as a speaker on care partnering is 17 years of experience garnered through her marriage to fellow Olympic cycling medalist Davis Phinney, who has PD. More details to follow.

That's about it! Hope to see you at some or all of these great moments in Northern Parkinson's.

Saturday, November 11, 2017

I Said, Late-Breaking Meeting, Speech Therapy for PD

Hi folks, I just received a note from Rock-Star speech pathologist Anne Ver Hoef who has this to say "I’m organizing a PD speech group: meeting Monday, Nov 13 at 4:00 pm at Denny’s on DeBarr Rd, back room. I️ have invited several people but got behind in timeliness. Sorry for late invite. I️ don’t know if this will be a 1-time thing or if there is interest in group that practices skills and strategies and meets somewhat regularly." As many of you know Anne is a terrific therapist and a stellar person to boot. This is bound to be a fruitful use of your time.  I hope it isn't too late for you to adjust your schedules to attend this clambake.

Think LOUD,

Peter

Tuesday, October 31, 2017

A new episode of The PD Pundit (He's only trying to help) Hot on the trail of a Parkinson's cure is up over at ParkinsonsDisease.net. Today's topic, the rapid acceleration of PD care.