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!


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,

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!

Thursday, August 14, 2014

Uphill, Through the Past

The view up Powerline Pass From a trail near the Glen Alps parking lot

A sure test of whether you are in Anchorage and not some plodding Midwestern town is to lift your eyes above the traffic, filling stations, fast food joints and big-box stores, and see the broad shoulders of the Chugach Mountains holding up the sky. New Orleans has music, San Francisco has food, New York has art, Anchorage has the Chugach Range.

There's little point to living here if you don't take advantage of Chugach State Park. The park is just under half a million acres of mountains, streams, and glaciers, home to wildlife from lynx and wolverine to bull moose and grizzly bears. It lies just East of town. Thanks to various other parks and green spaces, it can be a little difficult to tell just where Anchorage leaves off and Chugach Park begins. It's been said our city is unique in that, one half hour after eating a perfectly cooked and served gourmet meal, you can find yourself dangling from a precipice deep in the wilderness, convinced that you are about to die, and your body never found

I'm no Dick Griffith, or Billy Finley, but my Dad was a serious enough amateur climber to keep on hand an ice ax, lengths of climbing rope, and a pair of lethal-looking metal crampons, arrays of spikes he strapped to his boots to keep from falling where the going was icy. I never was serious enough about climbing to need such tools, still, Dad left me with an appreciation of our local mountains.

Over the years I hiked the usual peaks, from Rendezvous and O'Malley, to Girdwood's Crow Pass. I stood on summits in cold sunshine, shivering while admiring the views of the city to the West, then turning to see hundreds of miles of forbidding, serrated mountains stretching East and South along the coast all the way to Seattle and beyond.

There is no reason Parkinson's disease should keep you from the high country. But having PD makes it all too easy to say you're too tired, too busy, too bad at balancing, or too sick to risk a tumble on a scree slope or a slippery stream crossing. You consign the mountains to your healthier past and try to content yourself with the flatlands.

That turns out to be mysteriously difficult. Flatness is another way of saying "boring". Trips unmade and favorite routes tug and pull, deaf to your reasonable excuses. The mountains gnaw at you. Walking high trails can restore and reward. Forsaking them feels like punishment.

Three days ago, at 1:30 in the afternoon, I got tired of being punished. I have always wanted to ride my bike up to the Glenn Alps area, the most popular gateway to the park. I chugged some water and pumped air into my tires, and was on the way up the 1700 foot climb by 2:00.

This is not as bad an idea as it seems. Many people with Parkinson's who can barely walk are able to ride a bike. Bicycling requires little in the way of fine motor skills (unlike say, typign, er... ttping... dammit!.. TYPING). And provided I remember to take a pill every two hours, my body remains fairly well-controlled. Besides, if it got to be too much, there was a simple solution. Just turn the bike around and coast home.

The ride turned out to be more than a simple passage through space from point A to point B, as different places on my route marked different moments of my past. Just a few minutes into the ride, the memories began to flit by as I passed Jupiter Street, where we lived for years in a house built on a lot that was given to my parents by the State of Alaska to compensate them for land they lost in the 1964 earthquake. It was in that house my son grew up. It was the house where we lived when I was diagnosed with PD.

Keep climbing.

Further on up the road, breathing hard, I traveled up a steep curve I used to roar around in a VW fastback in the mid-1970s. Back then it led to jam sessions at the semi-palatial, partially-built home of my friend Paul. Stoned, loud, and alienated, we plugged in and purged teen angst with squalls of three-chord Rock and Roll. Occasionally we were joined by a real musician, David Palmer. Two years behind me in school, he easily and unintentionally humiliated all of us with brilliant playing. David's road proved harsh. His father was a preacher who had no use for his son's guitar virtuosity nor his interest in jazz. Inevitably, conflict followed. A few short years later Dave was run over and killed on a street in Northern California.

Keep climbing.

The way runs by the former house of a man to whom I used to give a monthly ride to the Parkinson's support group meeting. This I came to dread. Gaunt, with a harsh glint in his eyes, and semi-delusional, he would brag that he got George Bush elected by convincing him to take on Colin Powell as his Secretary of State. Right. Then it was time to boast about his alleged close friendship with Senator Ted Stevens. Next he'd complain about the lack of state services for old men who lived halfway up a mountain. On the way home he would cajole me to stop at McDonald's where he'd buy hamburgers he saved for later. When we got back to his house he'd have me fetch his mail, which I remember as a combination of religious material and titty magazines. Good times.

Keep climbing.

Made the turn onto Upper Huffman Road. Here the way becomes truly steep. My lungs felt like they would  blow through my chest wall as I reached Ginami road. I saw the house where a reporter for the paper lived in the mid 1980s. Not terribly long after arriving, she scared the crap out of all of us by making a serious attempt on her own life. She later invited Pam and me to dinner and I seem to recall her accidentally scalding herself with boiling noodle water. Or is that my memory playing tricks on me? Eventually she disappeared back down South. What has become of her, I don't know.

Keep climbing.

At the intersection with Toilsome Road, I was forced to walk the bike until I regained my breath. I remounted at the hairpin turn by the gated home that used to belong to Dr. Gary Archer. Larger than life, even by Alaska standards, Archer became wealthy selling cut-rate vacations to Hawaii through his explosively growing travel agency, while simultaneously working as a cardiologist. I remember him on TV in an Hawaiian shirt and lei, plugging tickets to the islands. Eventually his travel agency, plagued by customer complaints about slow refunds, went bankrupt, and Archer returned to full-time medical practice. He died in a 1997 river-rafting accident. The raft he was riding in capsized after hitting a canyon wall on Sixmile Creek.

Keep climbing.

This stretch of Toilsome road is where, in 1975, I tore a hole in my enormous, puffy, blue, down coat, and came within a hair's breadth of winning a Darwin Award. It happened when I was sledding down the road, and wrecked at high speed. Beyond that, details are fuzzy. I believe it was the same day I sledded past a Volkswagon Beetle on its way downhill. We gave this stupid pastime up when, in an event foreshadowed by the hole in my coat sleeve, a friend broke his arm when he ran his sled into a dog.

Keep climbing.

In the mid 1980s our friends Peter and Kathleen lived in one of a small clutch of houses perched near the park entrance. They threw terrific parties where we would talk until late, with the lights of Anchorage glimmering far away below. As we drove home, we could sometimes  watch the Northern lights as we descended through the dark. Our friends paid the price for their remote sanctuary. Many a winter night, they had to stop at the foot of the hill, don rubber suits, and wrestle traction chains onto their tires. Some nights they would attempt the road without chaining up, eventually encountering a section that simply defied them. Then, Peter told me, he would sometimes resort in his frustration to "berm bashing", driving his small car in a rage into the frozen banks of snow and ice which lined the roads. He could see the marks he left as well as those of his neighbors. The two of them eventually threw in the towel on the place after howling winds tore a big chunk of their roof off one winter.

Keep climbing.

Unbelievably, I find myself pushing my bike up the final leg of the trip and into the parking lot.  It's been only an hour of hard pedaling. The familiar profile of Flattop mountain rises toward the sky, evoking a few last memories. Every summer when I was small we'd climb Flattop with a new crop of visiting college students from the South Pacific. It was the unofficial start of Summer, and always one of its highlights. The first time I made it to the summit, my shock and disappointment at the fact that the top was not perfectly flat was echoed years later by my son, who reached the mountain top at the age of five, looked around and said "It's not flat. Let's go."

I didn't tarry long in the parking lot. I was wary lest I get chilled by the cold wind on my sweaty body. Besides the glorious ride down was calling. Enough of the old memories. It was time to make some new ones.

Anchorage from a short walking loop at the Glen Alps parking lot.

Thursday, August 7, 2014

August Parkinson's Disease-Related Events for Southcentral Alaska

Once again it's time to gaze slowly into the crystal ball, and go out on a limb with predictions about what the semi-sultry month of August has in store for those of with an interest in PD...  I see... YES! a Telehealth conference!... Details follow: You are invited to attend the Parkinson’s Education TeleHealth Presentation - A PDTeleConnection Monday, August 11th, 2014 at 1:00PM Providence Hospital Room 2401.

Presentation Titled: The Hidden Message of Anger and Depression Speaker: Elizabeth Daniels, M.A., LMHC Elizabeth is a Mental Health Educator. She has been in private practice as a licensed mental health counselor for 15 years and concurrently taught psychology at the college level for 7 years. She specializes in couples counseling, anger management, depression and anxiety disorders. Topic: The Hidden Message of Anger and Depression. Have you ever felt trapped in the feeling of anger or depression and believed there was no way out? During this talk you will learn the big-picture map of how our emotions work and the directions you need to find your way out of suffering and into a happier life. You will learn: The purpose of anger and depression, How anger and depression are connected and the force that drives them both,  A step-by-step plan to minimize and even eliminate the experience of anger and depression How to decrease anger in others. 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.
Following at a dignified pace behind the TeleHealth event, we come to the August support group meeting, Saturday the 16th, and for once I got off my lazy... Boy Recliner, and actually got us a speaker! A speaker who will speak about speaking! After fighting over the phone all morning with an insurance company and a hotel reservations web site , you can bet I will be listening carefully as the one-and-only Anne Ver Hoef, speech pathologist and LSVT-trained practitioner gives us an earful on talking understandably and swallowing without choking. The usual time, 3:30, downtown and upstairs at the gracious and commodious Pioneer Home. When I put it like that what can you do but plan to be there?
And now, taking a giant step into the future, I see that at the October 18th meeting we will have Dr. Ryder Gwinn, neurosurgeon at Swedish.  He works with the team at Swedish Neuroscience Institute (including Peggy Shortt, Susie Ro, Jennifer Witt and Peter Nora). He will be able to take your questions about the latest on Deep Brain Stimulation, and the neurosurgery program at Swedish in Seattle.
As he crystal ball fades to black, I look forward to seeing all of you LIVE AND IN PERSON at these landmark events.
Your PD Maitre'd

Sunday, July 20, 2014

Summer Picnic Report

Summer Picnic wildly successful, man claims
It was a beautiful Saturday to sit in the sun, relax, drink beer and chat about catastrophic illness. I mean, who wants to talk about falls, tremors, discrimination and rapidly advancing decay when the weather is dismal? OK, I do, but besides me, who would do such a thing?

We traded war stories, threatened to show each other nasty bruises and slugged down Chaga tea brewed by Travlin' Dominique Collette. The tea was made from fungus he harvested from a birch snag in my back yard. It was, he told us, loaded with antioxidants. It tasted surprisingly good, sort of how you would expect a birch tree to taste. Thanks to everyone who came, and especially Bob and Carolyn Rinehart for leading the effort to organize this year's picnic, and for bringing some Texas-Style smoked ribs.

Dominique ever-so-gently pounds the crap out of Chaga freshly harvested with dull knives from our backyard. Amazingly, nobody was injured.

Enjoying sun and coversaton at the rustic Singing Fiddle Ranch.

Wednesday, July 16, 2014

'We Use Only 10% of Our Brains.' is 100% B.S.

I've long been skeptical of the idea that humans use only 10% of their brain capacity. It's like arguing we waste our capacity for limb use by only walking on our legs. The Atlantic's Sam McDougle makes mincemeat of this myth here. The article has some nice reporting about where we got this hare-brained notion in the first place, and a little reflection on the present state of neuroscience.

Friday, July 11, 2014

Early Warning: Sept. 20th meeting to be a Lulu! UPDATED JULY 11

You will want to mark your calendars for the September 20th meeting. We plan to  have Dr. Ryder Gwinn from Swedish Hospital in Seattle giving us the latest on Deep Brain Stimulation surgery as they practice it at their now well-established program. This is your chance to ask questions of someone audacious enough to run electrical wires inside the heads of people he barely knows. Reporting from the age of miracle and wonder,  your faithful correspondent, Pete

Hi all, Whoops! Minutes after posting above about the September meeting with the Seattle neurosurgeon, I got a note from the organizer of the trip alerting me to the likelihood that the date of the meeting  will change. Watch this space for breaking updates as they occur.
Your dubious oracle,


PS~ Whatever else happens, September  meeting will STILL be a Lulu.

Tuesday, July 8, 2014

Parkinson's Events in July around the Anchorage Area

Here is what I know about what is coming up in July ...
MONDAY, JULY 14th Another riveting and interactive teleconference! You are invited to attend the Parkinson’s Education TeleHealth Presentation Monday, July 14, 2014, 1:00 p.m. The topic: Practicing good Nutrition is important for everyone. A practical and useful approach Speakers: Sabrina Gondor, CHHC, AADP, CCWS Certified Holistic Health Coach Danelle Crabtree, CMA-C, Corporate Health Alliance Representative. This seminar gives you basic, practical and useful information about nutrition with a focus about what antioxidants are; why they are important; and how using antioxidants can increase your overall wellness. 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.) 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 eared 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.

The regular meeting of the Anchorage Parkinson's Disease Support Group will be held on Saturday, the 19th of July, at 3:30. It's time for our annual picnic potluck. To make this the most festive occasion possible, we will hold the meeting at my house, 9601 Elmore Road. To find the house go to the intersection of Elmore and Abbott Roads, just below Service High School. We are South of Abbott about a quarter mile on Elmore. Our driveway is marked by a green mailbox on your left, halfway up a small hill. Our house has a green metal roof and cedar siding The event is a potluck, so bring something that people will enjoy sharing. We'll see you then!

Wednesday, June 25, 2014

Tuesday, June 24, 2014

A Penny For Your Thought Experiment

There is a body of thought that holds that people with Parkinson's (Hitler aside) tend to be, let's not mince words here, GoodyTwo-Shoes. Our parkie on the streets performs an exhaustive investigation and comes up with  an explanation. Being evil is too damn much work.

Tuesday, June 10, 2014

Anvils, A Collaboration With John Straley

Way back in the last century, the early 1990s, I think, I spent an enjoyable evening in Juneau with Sitka novelist, poet and criminal investigator John Straley. It was the final night of the legislative session and the usual intrigue was ripping like the Taku Winds through the Alaska Capitol Building . The two houses of the legislature were tussling with each other and the Hickel administration. Deals were being concocted and demands were being made. It was a wild ride as usual, and we had a fine time watching it all fall together, or apart. After the session ended, John generously sent me a copy of his book "The Woman Who Married a Bear". Then we lost touch.

Half a year ago, I ran across John on Twitter, followed him, and we struck up an electronic acquaintanceship. In the course of our tweets John learned that I have Parkinson's Disease, which also afflicts his wife.

A couple months ago he was in Anchorage on a book tour for "Cold Storage, Alaska" (which is a terrific read.) I went to his presentation, and we had a nice chat. John suggested we do some sort of collaboration. I said "Sure". These spur-of-the-moment ideas usually fizzle when the time to do the actual work arrives. So I was a bit surprised that John called my bluff with a poem, "Anvils", which appears below for your reading and viewing . I believe as you read it you will come to understand that it's not about anvils.

Monday, June 2, 2014

June Doings for People in Southcentral Alaska With an Interest in Parkinson's Disease

Turns out that when I sent out the initial version of this post,  I didn't know squat about what to expect this month. Well, that may be going a bit far. The telehealth conference will take place as I said, on the 9th of June, at 1:00. Alaska time. The topic  will be elder  law. Here is the lowdown:

Presentation Titled: Elder Law, Steps to Estate Planning and Long Term Care for everyone
and any health status. Speaker: Dick Sayre, Attorney at Law is a principal in the law firm Sayre and Sayre, PS in Spokane, Washington with a focus on Elder Law
Topic: Elder Law, Steps to Estate Planning and Long Term Care for everyone and any health status. Introduction to Durable Power of Attorney’s, Living Wills and much more. Please prepare for an 1 long presentation with a question and answer period (Specific legal questions will need to be addressed with your attorney or with Mr. Sayre at different time.)

For more information contact : 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.
To attend the Alaska meeting, proceed with all deliberate speed 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. )
So I did know squat about that. But the Parkinson's Support Group picnic has been moved to July. This means the meeting for the 21st June will be of the normal, everyday variety. Except I will be away because the band in which I play has a gig up in Gakona. There is no reason you should not meet without me. In fact I believe there is still much to be done in effecting my ouster as leader of the group. This will make a fine opportunity to fine-tune finishing touches on any plots for a coup d'etat. Or you could talk about the picnic, which is now set for the 19th  of July.
This year the picnic will be spearheaded by Bob and Carolyn Reinhart. (No relation to Django) You'll want to be there as Bob plans make Texas Style barbequed ribs! The place will be at my house, 9601 Elmore road (Directions to follow.) time will be 3:30. It's a potluck, we hope you will bring a salad, side dish or dessert. Bob and Carolyn would appreciate an RSVP to their phone, 345-3961 or by email to ccrinehart@gci.net Please rsvp by July 17th. Big thanks to the two of them for shouldering this task.
Enjoy the Summer,

Tuesday, May 13, 2014

Blog Bling! Don your Coast Guard Approved Glotation Device Before Reading

I can't really tell if this is a big deal or not, but what the hell. Off and On, the Alaska Parkinson's Rag, has again been named one of the top 15 Parkinson's blogs. The San Francisco Website Healthline said in their announcement that they were diligent about making their choice, and avoided calling me quirky this time around. Click here to see their attaboy, and the other recognized blogs. I'm considering this a win until further notice. Also, I plan to be insufferable for the next few days, so if you run across Pam be extra nice to her.

Saturday, May 10, 2014

Something a Bit Different: A PD Poem From a Support Group Member

Here is a prose poem by a member of our support group whom we'll call Anniel. She provides a nice glimpse of what our meetings are like.

. . . in sickness as in health . . .

I had thought to be first to leave since you were
the one called upon to do the caring, and you soon did
as you stood always by me.
Now I'm not so sure as you descend into your
own private hell of illness, PD -
Parkinson's Disease.
I dreamed last night of a time when you ran up the ladder
while carrying two bundles of shingles on your shoulder
something you can no longer do.
I wasn't worried then but I do worry now -
all the "I" sounds above are not about "me", but about what
"we" are - in this together.
Yesterday we met with Parkinson's friends to share
news and humor (always mixed with pain) -
the only place where PD can be funny.
Sallie wants her PD to "just go away" but says so
with laughter and everyone laughs, too,
because they know PD doesn't "go away."
We laugh with Peter, who, like many others "freezes"
while walking forward. He can only move then
by walking backward.
Once at the airport he "froze" after clearing TSA, then
had to walk backwards all the way to his gate and
onto the plane - no one even questioned him.
Some PD people "freeze" but can be "unfrozen"- or
is it "thawed"? - by only a touch. Others must be led from
the front or pushed from behind.
Some "freeze" if they try to step on a stool, or step on a line
or crack, or maybe the opposite is true, they can only
walk if ON a line or crack. Crazy.
We discussed ways of coping with loss of balance, constant pain,
garbled speech, which medicines cause trouble for some
but not others, and the things doctors don't know.
Susan is newly diagnosed and wants to know if anyone
else has trouble with speaking, drooling, falling,
sleeping, vivid nightmares, leg cramps -
The three Dans, Deanna, Peter, Sallie and Bob answer as best they can -
Susan asks quietly, "Has anyone lost their sense of smell?" All
hands go up. She looks relieved.
After all this is only a "movement disorder" that
makes your arms "shake a little bit." I once heard a
doctor on the radio say so.
He evidently has not seen anyone in the throes
Of dyskinesia, or shaking from head to foot, or walking
by running rapidly on their toes and moving mere
inches at a time. Nor has he seen anyone who has not
slept more than minutes for what seems like months - as
they cry out for nonexistent help.
Just before leaving I briefly touch again on a matter that intrigues
me, one that PD people do not often discuss, even
amongst themselves, and certainly not with doctors -
"How many of you believe you were born with PD?" Eyes always
drop as almost all hands reluctantly raise. No one, and I do
mean NO ONE, will tell their doctor this.
If a patient did, would it matter to the doc? Or would he think the person
is assigning too much importance to tracing the cause of
his illness, or maybe think he's just crazy?
You see, no one knows what causes PD. There have been no real
advances in meds or treatment for nearly twenty years. Big things
are always just around the corner.
Until the Big Things happen, we live with what is. I hope you
know how much of this I share with you as I clasp your trembling
body in the night.

Saturday, April 26, 2014

Second "Community Blog" Post for the Northwest Parkinson's Foundation is Now Available

My second blog post for the NWPF "Re-prioritizing hope"can be found here.  This is part of an exclusive series of posts written especially for the Foundation, which is why I'm linking instead of simply publishing the text here. I hope you'll read it and find it at least thought-provoking. thanks, and festinate forward! 

Tuesday, April 22, 2014

Vitamin X, The Third Great Discovery in Parkinson's Treatment in the Past Forty Years

(Adapted from a talk I gave recently to  our local PD support group)

Parkinson's Disease has been afflicting humanity for thousands of years. For most of that time,  not much could be done to alleviate the symptoms, much less halt the ravages of the disorder. In the past forty years or so, there have been three major developments that have changed the way patients experience symptoms of Parkinson’s.

The first discovery came in the mid 1960’s, researchers found the motor symptoms of PD could be alleviated through use of levodopa. These symptoms of Parkinson’s Disease stem from reduction of the ability of the brain to make dopamine, the chemical messenger that enables our brains to communicate with our muscles. When the body is supplied with levodopa, combined with carbidopa  to avoid nauseating patients, the brain can transmute the l-dopa chemically to dopamine, making up for the lost supply. This can mean nearly total control of symptoms, at first. (Sinemet is the medicine's commercial name)

The second great change in symptom management came with Deep Brain stimulation (DBS). This is a surgical procedure that can have dramatic results in patients who are “Good Candidates” (patients who respond well to l-dopa and have no significant cognitive impairments) DBS was approved as a treatment for PD by the FDA in 2002. The procedure is audacious and demanding, but the results can be impressive. Unfortunately, not all patients qualify to have the operation, and for reasons that are not understood, occasionally a good candidate will have bad results.

In fact, both these developments, impressive as they are in technical rigor and in results in terms of improved quality of life, have drawbacks. In the case of levedopa, as time goes on and patients lose more of their capacity to cope with the disease, they compensate by increasing their dosages. This leads to unwanted side effects that are as debilitating as the disease. Among these side-effects are Dyskinesia, excessive unwanted movement, and motor fluctuation, the "wearing off" of the medication that results in the unmasking of tremor, softness of speech, slowness and all the other motor symptoms that the medicine holds at bay.

Not to mention the that medication must be taken regularly throughout the day, at the correct intervals for meaningful relief. Life being what it is, schedules can get messed up.Which means that the patient gets messed up, too. In addition there are Parkinson’s symptoms that seem beyond the reach of levodopa, in particular the loss of sense of balance. Still, the discovery of levodopa as PD therapy has led to great increases in both quality of patients lives, as well as sheer life duration.

Like l-dopa DBS surgery can have great impact on a patient’s symptoms, but it comes with side effects and limitations as well. As with Levodopa, it seems unable to prevent falling. It has little effect on non-motor symptoms, like depression. And of course it IS brain surgery with all the attendant risks of bleeding, infection, etc. It is also blamed for some patients loss of ability to speak clearly, and in certain cases, for actually worsening balance. Also, again like l-dopa, DBS only treats symptoms without affecting the underlying disease.

There is a third exciting development in the treatment of Parkinson’s Disease that is just now coming into its own. It brings significant advantages and promise of hope to the table. It is relatively cheap and freely available. Furthermore, when used correctly, it is without nasty side effects. Almost more exciting, and unlike the first two developments, there is evidence that it is disease-modifying, not merely useful for coping with symptoms. It is wise to consult with your Doctor before you start this approach, but after the initial work is done, you are free to use the treatment as you see fit.

So what is this miraculous PD panacea, and how can you obtain it? It’s Vitamin X... exercise!

 Ten years ago, little was known, or, at least published, about the benefits that exercise can confer on PD patients. In fact, for awhile, the conventional wisdom was that exercise was not a good idea if you had PD. Times have changed.  Exercise is now seen as indispensable PD therapy. What do researchers say as to how to benefit from exercise? Well one, Dr. Jay Alberts (Check out this video, featuring his research) has found the performing “forced” exercise, over and above what you would normally put into a physical activity can enable patients to increase their score in Parkinson’s assessments by 30-35% over a period of a month! If one came up with a drug that did the same tomorrow, they'd be rich and celebrated the World over. It’s true that if patients did not continue their exercise regimes, they would lose the benefit over three weeks time. So what? If I skip taking pills for three hours, let alone weeks, I’m in a world of hurt.

One of the worst aspects of Parkinson’s is the loss of the ability to balance, and the consequent falls this brings on. In addition to being scary and painful in their own right, falls can result in drastic complications, such as broken bones, These can lead to even worse complications, such as infected bedsores, which can be fatal. Ten year ago when someone came to me and said “How can I cope with falling?” all I could do for them was to suggest ways to recover and to get up off the floor. Now we know that various forms of exercise, Yoga, Tai-Chi, and dance can help to recover and preserve a patient’s ability to balance.  And we are lucky enough in Anchorage to have both an instructor of dance for PD and another for Yoga for PD. Both have gotten special training in working with PD Patients and each give weekly classes in these fields.

Exercise may be the only way known to achieve the Holy Grail of Parkinson’s treatment: Disease modification. To slow or stop the progression of this disease has long been an unfulfilled goal of Parkinson’s research . CoQ10, Eldepryl and Azilect have all  been touted as having the ability to slow this disease. None has been proven to make a dramatic difference. According to the Michael J. Fox Foundation “While Teva (maker of Azilect) was praised by members of a US FDA advisory panel and regulators on 17 October for conducting a complex clinical trial aimed at demonstrating that its Parkinson's disease drug Azilect (rasagiline) may slow the progression of the disease, the committee unanimously said the study ultimately failed in providing substantial evidence to back up that claim.” What would such a claim mean if proven? Again, from the Fox Foundation: “Dr Russell Katz, director of the FDA's Division of Neurology Products, noted that US regulators have never approved a treatment for disease modification in any neuro-degenerative conditions. "The effect of disease progression is something that is tremendously important, both from a clinical point of view for patients, but also from a regulatory point of view," he said. "If you tell people in labeling that a drug has an effect on disease progression, you really want to be sure it has an effect on disease progression."If a drug is found to have an effect on disease progression, Dr Katz said it would "change dramatically, not only clinical practice, but controlled trials in the future.”

 Exercise is now seen as a likely way to reach this elusive goal. According to the National  Parkinson’s Foundation:

“There is a strong consensus among physicians and physical therapists that improved mobility decreases the risk of falls and some other complications of Parkinson’s.  They agree that practicing movement—physical therapy, occupational therapy, and participating in an exercise program—improves mobility.  By avoiding complications, you can avoid some of the things that can make PD worse.  Beyond this, we know that people who exercise intensely, for example by doing things like running or riding a bicycle, have fewer changes in their brains caused by aging.  Studies in animals suggest that Parkinson’s disease is also improved by exercise.”

Furthermore there is a clear theory that  explains what exercise may do to foster neuroprotection, the guarding of nerve cells from harm. Exercise increases the level of neurotrophic chemicals in the brain, These are the chemicals that promote the growth of nerve cells. The more of the neurotophic chemicals available, the better the conditions for bolstering  your brain cells. It also appears that exercise allows the brain to use dopamine more efficiently. So you make the most of what you’ve got.

What is the best way to take advantage of this new knowledge of the benefits of exercise?  According to the NPF:

”The best way to achieve these benefits is to exercise on a consistent basis. People with Parkinson's enrolled in exercise programs with durations longer than six months, regardless of exercise intensity, have shown significant gains in functional balance and mobility as compared to programs of only two-week or ten-week durations. However, when it comes to exercise and PD, greater intensity equals greater benefits. Experts recommend that people with Parkinson's, particularly young onset or those in the early stages, exercise with intensity for as long as possible as often as possible.  Your doctor might recommend an hour a day three or four times a week, but most researchers think that the more you do, the more you benefit. Intense exercise is exercise that raises your heart rate and makes you breathe heavily.  Studies have focused on running and bicycle riding, but experts feel that other intense exercise should provide the same benefit. Regardless of your condition, you should always warm up and cool down properly, exercise in a way that is safe for you, and know your limits.  There are many support groups, therapists, and exercise programs who can help with PD-safe exercise and help you to set up your own program if that’s what works best for you.  Be sure to consult your physician.  If your physician is not a PD expert, you can call the NPF helpline (1-800-4PD-INFO) to help you to explain to your physician the importance of exercise so that you and your doctor can put together a plan that will work for you.”

Is exercise a magic bullet against PD? Lab experiments with Rats that were injected with a substance that induces PD-like symptoms, and then exercised showed a lower rate of symptoms than a group that did not have exercise. But the problem is that if exercise were an all-protective panacea against Parkinson’s Disease, how do we explain the fact Olympic Athlete Davis Phinney got the disease?  He was certainly exercising big-time before diagnosis. So, no. We haven’t got a magic bullet. But turn the question around. How bad off would Phinney be if he had NOT been training for the Olympics much of his life? We don’t have any way of  knowing. But the knowledge we do have suggests that his exercising was not a waste of time.

Of the three major developments in the world of Parkinson’s in the past 40 years, it’s hard to say which is the most significant. But there is clearly one which, in its ease of  access, low cost, return on investment, lack of dangerous or otherwise undesirable side effects, and promise of substantial outcomes is in a class by itself. The question for you, given the stakes and the state of the science is what are you waiting for? (h/t @ Dr. Dave Heydrick)

Friday, April 4, 2014

Book Update: Editor Tells Me We're Getting Close....

I'm now working on a color version of my PD manuscript. The editor says I'm very close to finished with the writing. I'm told there is just "tweaking" at this point. Adding color is one way I'm killing time while awaiting further elaboration.

Wednesday, March 12, 2014

New Blog Post for the Northwest Parkinson's Foundation is up!

I recently mentioned that The Northwest Parkinson's Foundation would begin posting blog entries from me as part of their Community Blog. The first one is up, and you may read it here. This is an exclusive article done especially for the NWPF, and is not merely a reposting from this blog. I hope you will read and enjoy it. Be sure to check out the rest of the generous offering of information about PD while you are at the site.

Monday, March 10, 2014

Northwest Parkinson's Foundation Community Blog Now Active

What's a loyal Off and On reader to do until I heal up enough to post again? Well try the new blog from the NWPF. Lots of good info there, and there will be occasional posts from yours truly. I filed two posts before the accident, and a third following it. These are all-new, never before published material. I will post an alert here when they go up on the NWPF site. Gotta' run.

Sunday, March 9, 2014

A brief intermission

I seem to have fractured my right arm in a fall. This makes drawing difficult. So unless I get my non-dominant, and strongly PD affected left side up to speed, we will be having an intermission of 6-8 weeks. I apologize, and believe me, I am doing all within my power to get back to the drawing board. Thanks for checking in. Peter

Sunday, February 16, 2014

Drinking From the Fire Hose, Where is There Good Parkinson’s Information?

With Parkinson's Disease we still lack essential knowledge. But there is no shortage of raw information. It comes in a cascade of books, a tsunami of Web sites, an ocean of blogs, a river of leaflets,  and even comics. Where to start?

Here's a wacky, way out proposal: lets ignore books. Sure, go ahead and read them if you find a certain person's story compelling or inspiring.  But all the information available to make our lives better lives in many forms on the Web, and in humans around us. Let's take a look.

Web Sites of National Parkinson's groups...
I: National PD groups all have countless pamphlets that you can order, download or read online. Everything from explainers on medication to advice about exercise. Try www.parkinson.org  or www.pdf.org The Michael J Fox Foundation has a well-organized section devoted to understanding Parkinson’s. Often National orgs will have a helpline that you may call with your questions, and get answers from staff familiar with Parkinson's and its treatment.

...And a Dandy Regional Organization
 The Northwest Parkinson’s Disease Foundation has a weekly news roundup, usually about 5 articles that they select to feature. My sense is that the person doing the selecting is doing a better job of finding interesting and pertinent material lately.  You can sign up for these emails here. (Full disclosure: I do a monthly blog for The NWPF. It will appear when they debut their Web site redesign.)

The Parkinson's Disease Oracle
 I have come to think of  Viartis Parkinson's Disease News  as The PD Oracle. This is how they describe themselves: 
 “Viartis are independent and entirely self-funded medical researchers specializing in Parkinson’s Disease based in London, England. Viartis is not part of any other company, university or organization, and have no religious or political affiliations. Articles are chosen solely on the basis of their medical significance or potential interest. The overwhelming priority is the facts, regardless of whether or not they contradict prevailing views or vested interests. Analysis of articles is provided either to explain the background or implications of new information, or to balance misleading claims.”
 My impression is that, when it comes to content, this is pretty accurate. To get email alerts when new items appear, send an email with the message “Subscribe” to mail@viartis.net . No form of identity is required.

A savvy Email Discussion List
 Anyone with an interest in Deep Brain Stimulation surgery should sign up for the Yahoo DBS discussion group. It’s an interchange via email among people who have had the operation, their care partners,  and occasional cameo appearances by nurses and neurologists who work in the field. It is well moderated and informative. To sign up, go here and press the purple  + join group button.

A Bevy of Blogs
Blogs are people’s online journals about, in our case,  dealing with PD. There are tons of them. Among those that are consistently mentioned as high-quality are “Shake Rattle and Roll,” by Kate Kelsall, “Walking my Path With Parkinson’s” by Mariane, and “Studio Foxhoven” by Teri Reinhart. One that seems to get mentioned less, but is well-written and informative is John Schiappi’s “Aging, Parkinson’s and Me”. Finally, PD Plus Me looks at the difficulties of living with "Parkinson's Plus" disorders.

An Easy-To-Use Web Tool
You can sign up to have Google search the Web for news about PD or anything else you are interested in and periodically return you the news as an email Google Alert. To create a custom Google Alert, go here. A form should come up that lists search query, where you type in the subject you are after,  followed by a short list of preferences concerning what you want to know and how you would like it delivered. Then press “Create alert” and you’re in business.

Finally, there are human resources. Obviously qualified Neurologists are great sources of Parkinson's information. Support groups abound with street-level PD expertise and sometimes sophisticated, esoteric PD knowledge as well. Group members have concrete experience with the disease that can be an invaluable source of shared wisdom. But  use common sense in giving and taking advice. Each of us is at a particular point in our progression, and each of us has our own constellation of symptoms, sensitivities to medication etc. Also the placebo effect can be strong in Parkinson’s disease, even confusing research professionals. Take fad cure-alls with an enormous grain of salt. Demand citations of legitimate studies, and remember that PD is complex and has resisted every silver bullet that has been found or claimed.

This is by no means an exhaustive or even authoritative list of resources. Did I miss something? I guarantee it. Additions, disputations etc. are welcome. The comment button awaits! 

Thursday, February 6, 2014

February Parkinson's Activities For Anchorage Area

So what does February have in store for those of us of the PD persuasion? Besides the usual stumbling, fumbling, mumbling and tumbling, I mean. Well our friends at the Telehealth broadcast have another  show for us! Monday, February 10th at 1:00 p.m. We will hear from Ruth Palnick, Chaplain and a person diagnosed with Young Onset Parkinson’s.

Presentation Titled: “I love you but…”
“What people with Parkinson’s Disease wish their loved ones understood.”
Ruth’s presentation will be based on the myths and misconceptions about Parkinson’s Disease itself and what those affected experience that many don’t realize, including many things that many people with Parkinson’s like Ruth, say others don’t know but would be helpful to better understand what those affected by the disease are going through.
Please join us! Share and bring family and friends for a great topic!
- See more here.

To find the broadcast go to room 2401 of the Providence oncology wing on Piper St. Head 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.
Our regular support group meeting will be held on Saturday, the 15th of February.  We'll be looking at what is trending in PD news, discuss where to find pd info and see if we can come up with ways to verify whether a source is trustworthy. I look forward to seeing everyone.
Keep it together until then!

Friday, January 17, 2014

Winter Bicycling With Parkinson's Disease: Beyond the "Experimental" Phase Into the "Confirmed Whacko" phase.

Last winter I experimented with bicycling as an alternative to driving. Why? My driving ability has eroded significantly over the ten years since my Parkinson's diagnosis. To make a long story short, I've chosen to ride my bike year round to minimize my driving. (You can find out more here, in my first winter cycling post) I'm well into my second cycling Winter, and the fact that I am even composing this piece amounts to a small victory. It means that, in spite of everything, I am neither dead, nor so severely maimed that I am unable to continue. Yay. I have moved beyond the "experimental" phase into the "confirmed whacko" phase.

I did not measure my actual mileage last winter, but it was certainly significant. My sense is that I am lagging a bit this winter. Why? There seems to be more days when there is fresh snow on the trails which makes riding significantly slower. Second I am a bit intimidated by the recent death of a cyclist in town. Plus a few falls of my own have rendered me a bit more conservative. Nevertheless I remain committed to riding all winter.

Why expose myself to the danger and discomfort of winter riding?

This calls for a pie chart. Hold on while I whip one up... Here we are. Let's run through it, starting with the bad reasons. First, stupidity. Is it stupid to ride your bike during Winter? Yes. A simple checklist confirms this unfortunate fact. Cold? Check. Ice? Check. Cars? Check. Dark? Check. Well that's settled. Let's move on...

Machismo. Hold it buckaroo, isn't machismo a subset of stupidity? Wellllll, yes, I guess. But it IS only characteristic of one gender, and therefore distinct and interesting enough to merit its own category. I estimate that 12.5% of my motivation to ride through the winter is machismo. It would be more, but with PD, that's about all the machismo I can summon up.

Guilt, in the form of remorse for my carbon footprint, combined with my desire to avoid guilt should I cause a car accident, drives a rather hefty 12.5% of my motivation. And I wasn't even raised as a Catholic! Sheesh!

Moving to positive reasons for riding, we have 15%  sheer fun (and thrills). A masssive 25% of my motivation comes from the all-important role exercise plays in of coping with Parkinson's Disease. Finally, we have the savings on the cost of monthly car payments, gas, insurance and clever bumper stickers coming in at a solid 25%. Disclaimer: All elements involved in this chart are estimates; your mileage may vary.

Have I eliminated the infernal combustion system entirely from my appointed rounds? No. I still rely on my wife and others to chauffeur me at times. And I still climb behind the wheel on rare occasions. But I have found that I can take care of an enormous amount of daily errands, such as going to the bank, the Post Office, even moderate grocery shopping, on my bike. Sure, there is risk, but what the hell, I've already got Parkinson's Disease. My riding days are numbered. I can't let a little thing like Winter get in the way.

Wednesday, January 8, 2014

A Day With Parkinson's Disease, Final Page!

More with a whimper than a bang- the final installment of A Day With Parkinson's Disease. A few thoughts to close with. First, everybody has a different case of Parkinson's Disease. Some have no tremor, some have strongly predominant tremor. Some progress through the disease stages quickly, some slowly. Some are affected more on their right side, others on the left, and so on. So a day with PD is likely to be very different from one individual to another. And one person can vary substantially from day to day. I took notes all day on a day chosen at random to base this narrative on. It is faithful to those notes for that day except for obvious exaggeration for humor, i.e. exploding curry. If I seem to be coping well, it's more due to luck than personal virtue. First and foremost I was lucky to marry a person of great steadfastness and understanding. Second I am benefiting from years of patient and difficult research and the imaginative thinking of doctors, scientists and patients who have collaborated over the long run to find the medications and surgical procedures that I benefit from every day. Without them I would be bedridden right now. Finally, thank you for reading and commenting. Your thoughts and observations help me to clarify what I do and where it goes. A cartoonist without readers is a bird without a sky. The entire project is collected and sequenced here.

Tuesday, January 7, 2014

Anchorage Parkinson's Disease Happenings for January

Hi friends, it's January, the start of a brand new year (wild cheering, thunderous applause) with PARKINSON'S DISEASE (furious booing, nasty profanity). What are we going to do about it? Well, there is the continuing telehealth series, for one. The next telehealth broadcast is set for Monday January 13 at 1:00 pm in room 2401 of the Providence 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. This time the broadcast will feature Ian Riley, owner of fitness chain Oz Fitness. He will talk about being diagnosed in his early forties, how he copes and manages a demanding business nine years into his diagnosis. Ian likes questions and you are urged to send them in advance in care of Cyndi via center@spokaneparkinson's.org

As is our custom, the regular group meeting will be Saturday, January 18 at the Pioneer Home. You will recall that I recently uttered a pitiful "No mas" to continuing as head of this group, and asked if anyone out there in PD land would be willing to step up and assume the position. Happily, while nobody wanted to be the grand Poohbah of Northern Parkies, several  brave souls volunteered to take some of the load off me. So I will come with a list of things that I do to keep things rolling, and we'll see about who would like to take some of the different chores. Sally Spieker has volunteered to be in charge of getting guests in to talk to us. And the Rineharts have offered to help, too. For which I am deeply grateful. This will also provide a good opportunity to  discuss what you want or need from the group, and how to advance  in a fruitful direction for 2014.
Your ceremonial Head,