Tuesday, October 28, 2014

Is there Anything good About Parkinson's Disease?

Having promised to give notice when the Northwest Parkinson's Foundation published a new post written by me for their Community Blog, I would be remiss if I didn't point out this, in which I 'fess up to a bad attitude toward PD.

Tuesday, October 21, 2014

Exciting News for the Homer Area: A Support Group is Forming at the End of the Road

Hey Peninsula Parkies, give it up for Jolee Ellis!... I said, give it UP for Jolee Ellis!... I can't HEARRRRRRR YOU... Whoops! Sorry. Of course I can't hear you. Making noise is not our strong suit. Nevertheless, you should get in touch with Jolee, and let her know you would like to participate in the Homer Parkinson's support group when it gets off the ground in January or therabouts.

Jolee is starting from scratch so if you have knowledge and/or energy to help, I am sure she will appreciate it. To reach her by email send a note to  jellis24@gci.net  or phone her land line,  (907) 235-6349  or call her cell phone,  (907) 435-7551

There are many advantages to attending a support group. Among the benefits: exchange of information, the comfort in seeing people dealing well with PD, and the fellowship of people who get what you are going through from their first-hand experience. This has the potential to be big for those of you who take advantage of it. Contact her and let her know you want in! Kudos to Joleee for working to make this happen.

Thursday, October 16, 2014

Going With the Floe


 
Warning: life is habit-forming. Side-effects include: drowsiness, nausea, anger, anxiety, complacency, boredom, headache, indignation, crankiness, all the ills to which the flesh is heir, up to and including certain death. But I still wake up in the morning glad to be here another day. Yes, I'll choke a bit on my saliva and cough and drool here and there. Yes, I'll thrash and maybe shake for good measure. Perhaps I'll fall and break my arm again. I suspect that it's only a matter of time.

What can you do in a messed-up world except mess up? We hop from one shrinking ice floe to the next, reeling, slipping, stumbling, pumping adrenalin, panting for breath that we never completely catch. Meanwhile, the hounds have our scent. We fall to fitful sleep with them baying in the middle distance, and awake to hear them unmistakeably closer. So we must be away again, making it up as we go along.

The young, healthy and strong may fool themselves about the terms we agree to each day. But if you've been tagged with a diagnosis like Parkinson's Disease, that is not an option. In a defective universe, we're extra-botched, super-screwed, bungled-plus. But still. Please sir, can I have some more?

The old cliche says there is nothing certain in this world but death and taxes. Well, I'm here to tell you that this is not just a cliche, it's also wrong. In fact, there are numerous other certainties that I will stand behind. I guarantee the sun will rise tomorrow in all its fiery magnificence. The light from this merely middle-sized star will shower down on us from millions of miles away, yet still so bright we can't look directly at it. This glow will flood the world, making broken glass shine like a polished diamond, and picking out every golden leaf on every tree. At night the stars, many of which are actually entire distant galaxies, will continue to send their brilliance across the light years, beyond our reach, but not beyond our imaginations.

Under our medium-sized star, we will continue our dogged battle against entropy. Yes, haters gonna' hate. But builders gonna' build, dancers gonna' dance, painters gonna' paint and healers gonna' heal. I guarantee that the arc of the human drama, with its predictable failures, unexpected triumphs, its giddy slapstick, and moments of transcendence, will play again tomorrow to standing-room-only crowds right here on the third stone from the Sun.

We don't want to miss that. Each of us has a major role in this drama. There are no bit parts, we're all the hero of our own story. You can surrender to the senselessness, or you can build a campfire, pool your vulnerability with your companions, and hold the demons at bay for awhile with your shared strength. In the flicker of this tiny fire, this borrowed sun, you will find meaning enough among your comrades to make the trouble worth the going. Absolutely guaranteed.

That's a Hell of a promise. What makes me so confident? Because we're simply built that way. We are pattern finders, and meaning makers. We can't help it. Where there is no meaning, we create and impose it. And what other choice do we have? (Hint: none.)

So, while I'm at it, let me offer one more guarantee. If I'm wrong, and the Sun does not rise, the stars fail to shine, if the whole thing were to be called off, hounds, breathlessness, Parkinson's and all, I guarantee most of us would be disappointed. We are happy, even lucky to be here because we get to hear the next chapter. It may be "a tale told by an idiot", but we still have to know what happens next.

Friday, October 3, 2014

Parkinson's Events in Southcentral Alaska for October

With an eerie sense of deja-vu we look into the upcoming PD events and find that once again there will be a Telehealth conference about Parkinson's disease to which you are invited at no charge. Spooky!  The interactive broadcast will take place Monday, October 13, 2014 at 1:00 PM. You can find the Alaska broadcast by going to the Providence Hospital oncology wing on Piper St. Go to the second floor, walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right. Presentation Titled: Tools to Aid in Daily Living, especially for those affected by Parkinson’s Disease. -What kind of financial support is available to help pay for needed equipment? For more information contact : center@spokaneparkinsons.org
Our regular support group meeting will follow on the 18th at our usual time, 3:30. Oh, did I say "regular"? My mistake. An extraordinary meeting of the support group will occur on the 18th when Dr. Ryder Gwin, a neurosurgeon will come all the way from Swedish Hospital in Seattle to give us the latest info on how they are handling Deep Brain Stimulation surgery there. He will be joined by Keely Dailey of Medtronic, the maker of the device most commonly used in the procedure. If you are considering this operation, or have always wondered what a brain surgeon looks like, or are just curious about the amazing practice of treating Parkinson's and other neurological problems by inserting electrodes into a person's head you don't want to miss this meeting.
I hope to see you there,
Peter

Life in Slow-Mo, Legs That Won't Quit


Monday, September 15, 2014

Get All Bent Into Shape! Don't Miss the Monthly Meeting Sept. 20th


​ Hello friends, I'm sure you woke this morning with a nagging curiosity about just what in the heck the Saturday meeting of the Grand High August and Exalted Anchorage Parkinson's Disease Support Group will be ​
​ about. Well, wait no longer! Let the clarions sound! Bring on the ruffles and flourishes! ​(Note to self: "Ruffles and Flourishes" is a terrific potential name for a high-calorie, low-nutrition breakfast cereal. Get on this quickly before some other sharp young thing beats you to the punch!) Now where was I? Where... Oh, of course... I'm happy to announce that this month's feature presentation will be from local yoga instructor Rocky Plotnick. Rocky has taken it upon herself to get trained in Yoga for people with PD. She couldn't have picked a better time as recent studies have found Yoga helpful for those of us who must cope with this affliction, especially in the troublesome and important area of maintaining balance. But what am I nattering on for? Get the straight scoop from Rocky herself this Saturday at the gracious Pioneer Home in bustling downtown Anchorage! Extra points if you show up in Yoga pants, and do be prepared to try a little gentle Yoga.

Saturday, September 6, 2014

Please Call Stella, If She can't Understand You, Maybe This Will Help

I recently stumbled over the following paragraph:
Please call Stella. Ask her to bring these things with her from the store: Six spoons of fresh snow peas, five thick slabs of blue cheese, and maybe a snack for her brother Bob. We also need a small plastic snake and a big toy frog for the kids. She can scoop these things into three red bags, and we will go meet her Wednesday at the train station.
What is the point of this strange shopping list? According to Steven Weinberg of George Mason University's Speech accent archive, "The paragraph is written in English, and uses common English words, but contains a variety of difficult English sounds and sound sequences. The paragraph contains practically all of the sounds of English." It was composed to study people's accents (fun game based on this here). But it occurred to me that it might be useful to those of us with PD who have trouble enunciating.

If you are like me and have trouble in making any kind of speech clear, this could be the most efficient string of practice phrases ever devised. If you use it in combination with "Speak up for Parkinson's" a  free app from the Northwest Parkinson's Foundation, or as part of your LSVT drill, you should have the most difficult sounds covered, no matter what your accent.

Thursday, September 4, 2014

September Parkinson's Events in the Anchorage Area

Hello Friends, If anyone knows where August went, could you please notify me? And now, on to September before it gets away! This month's teleconference will be next Monday, September 8. Here is the lowdown, courtesy of the Spokane Parkinson's Resource Center: You are invited to attend the Parkinson’s Education TeleHealth Presentation Monday, September 8, 2014 at 1:00PM. To find the Alaska meeting, proceed with all deliberate speed to  Providence Hospital oncology wing on Piper St. Go to the second floor, walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right. Presentation Titled: It’s time to move. What do I do next? Speaker: Holli Korb, General manager Fairwinds Retirement Community Topic: Downsizing, steps and techniques to help reduce the stress of navigating those decisions and finding your new home. Speaker and panel. For more information contact : Parkinson’s Resource Center of Spokane at 509-473-2490 or by email at center@spokaneparkinsons.org  Meetings are free of cost and are also received in several communities over TeleHealth. The Parkinson's TeleHealth Program broadcasts live, interactive educational talks to a network of rural communities in the Northwest. On the SECOND Monday of each month, a guest speaker presents a topic geared toward the interests of Parkinson's families. The information is designed to help participants to improve their knowledge of Parkinson's disease and in turn their quality of life. www.spokaneparkinsons.org

​Our regular support group meeting will be on the 20th of September​
​ . Time is 3:30, Subject TBA. Looking down the road to October, remember we will have a speaker about Deep Brain Stimulation from Swedish Hospital in Seattle. That's all that I know about September Parkinson's news. If you know more, please drop me a line.

Tuesday, September 2, 2014

Please Pass the Placebo, A link to a new blog entry for the NWPF

Here is the latest entry in the blog posts that I am doing for the Northwest Parkinson's Disease Foundation. Sorry I can't print the entire entry here, but all you need to do is click the link above. Hope you enjoy it!