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.