Tuesday, November 25, 2014

December Calendar of Parkinson's Events

It's dark. It's cold. But at least you've got Parkinson's Disease. Given that, how could you spend your time better than attending this month's Telehealth interactive broadcast? You are invited to attend the Parkinson’s Education TeleHealth Presentation - A PDTeleConnection Monday, December 8th, 2014 at 1:00pm Speaker: Brian Gates, PharmD WSU School of Pharmacy, Spokane, Washington Campus Topic: Updates on Medications and Parkinson’s Disease. Please stay and join us for our annual Tremble Clef holiday sing along after the talk. For more information contact : center@spokaneparkinsons.org  Meetings are free of cost. To find the Anchorage 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.
Then we grope our way forward to Dec. 20, When we have our Holiday potluck for our December meeting. I'll bring something main dishy, and you bring whatever you would like to share.  This meeting will be a tad bit different as I hope to screen the documentary "Ride with Larry" about a South Dakota man's effort to ride his recumbent tricycle across his state to raise awareness of PD. Ride with Larry - Official Trailer - April 2014 from Ride with Larry on Vimeo.

Happy Thanksgiving, and watch your step, it's icy out there!


​Peter​

New Post Available on the NWPF Site

Diagnosis is a turning point, not a beginning. Or so I contend in this latest post for the Northwest Parkinson's Foundation. Last I checked, you could read it here.

Sunday, November 16, 2014

Guest Post: Alaska Author Mike Holloway Recounts Rigors of Publishing With Parkinson's Disease

Author Mike Holloway ventured into the world of publishing after Parkinson's Disease forced him out of his first career as a doctor. Below, he describes the measures he took to circumvent the constraints of Parkinson's while promoting his book following publication.

Mike Holloway with Kenneth Frank, grandson of Sarah and Johnny Franks, the subjects of his book "Dreaming Bears A Gwich’in Indian Storyteller, a Southern Doctor, a Wild Corner of Alaska."


A First Time Author and Parkinson’s

By Michael Holloway


The month of September 2001 is etched in my memory for the terrorist attack on our country that shocked the world and also the month that I was diagnosed with Parkinson’s disease.  I was an orthopedist, and within an hour of my diagnosis my surgical privileges were cancelled.

I loved orthopedics and was not ready to give it up, so I taught, usually for a month at a time, through Health Volunteers Overseas. Most of my work was in Africa. After eight years my PD progressed to the point that this was too difficult.

Some thirty-five years previously I had written the initial ten chapters of a book on my relationship with an elderly Athabaskan couple, Johnny and Sarah Frank, who lived a subsistence lifestyle above the Arctic Circle. They had a hard life – outliving only four of their fourteen children. Despite this they were always helpful to others, kind, and generous. They had a profound effect on my life, inspiring me to work to protect the unique Alaskan rural way of life and the habitat it depends on.

The book cover
I had always intended to write a book about them, and had even talked to Johnny about it.  No longer being able to do orthopedics gave me the time to write, and after considerable rewriting my book was accepted by Epicenter Press. It came out in May and is titled "Dreaming Bears, A Gwich’in Indian Storyteller, a Southern Doctor, a Wild Corner of Alaska."

I’d certainly read that writing was about rewriting but I thought my work would be over when the final manuscript was accepted by the publisher.  How wrong I was.

Small publishing companies depend on authors to promote their books. With so many books out there, the same is true with the big publishers unless you’re already famous. Epicenter had lots of ideas about how to promote my book. It was up to me to figure out what I could handle and how – with help from my wife Margie.

We had fifteen book events. I had no enthusiasm for public appearances. My voice is soft and I have difficulty speaking clearly. Attempting to do so wears me out. We had to carefully schedule events to conserve my limited energy so I could try to be at my best. At most of them, my wife did a reading from my book, and I saved my voice to answer questions from the audience afterwards.

I put together a slide show that ran in a loop throughout our presentation. Almost every bookstore had a microphone, so I only had to try and enunciate, not think shout. It worked well, and many people came up after an event to thank me.

People coming to book events want to get their book signed. I have good and bad writing days.  Even authors who have no trouble writing find having people lined up for their signature stressful. Marge designed a bookplate that I signed in advance on days when my writing was better.

Two of our events were at Costco, which is hard place to connect with people. Your publisher may want you at Costco because it gets your book there, but unless sales are steady it will not stay.

I did one live radio program, with Steve Heimel on Talk of Alaska. My PD did not faze Steve. It was challenging for me but went okay. Newspaper reporters were fine with asking questions through email.

Social media is a prominent part of book promotion these days that is worth emphasizing if you have PD. I have an author website and a Facebook page for my book. My wife does the design work and helps with emails when I need it.

Parkinson’s puts limits on some of the things you can do, but writing and promoting a book doesn’t have to be one of them.  If you’ve thinking about doing a book yourself, I encourage you to go for it.

Monday, November 3, 2014

November Parkinson's Events for the Anchorage Area

Well here we are, heading into the Tunnel of Winter, and wouldn't you know it, we still have Parkinson's Disease. Given that, I thought you should know that there will be a teleconference this month on Monday, the 10th of November, 1:00 pm at the Providence Hospital Piper Street wing. To find the Alaska meeting, proceed with all deliberate speed to Providence Hospital oncology wing on Piper St. Go to the second floor, and proceed 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. The topic of the meeting will be What to Know about Dental Visits for People with PD.  Speaker: Merri Jones, RDH, MSDH Department of Dental Hygiene, Eastern Washington University
The regular meeting of the Anchorage Parkinson's Disease Support group will be Saturday, November 15, at 3:30 in the Anchorage Pioneer Home. This will be a no-speaker event, a good time for you to voice your Parkinson's concerns and questions, and exchange information with other group members.

​Don't forget to get your flu shots, you don't want the flu *and* PD!

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