I'm old enough to remember when television was supposed to be bad for us. I'm almost old enough to forget this as well, but let's not dwell on that sad state of affairs. Instead, I want to dwell on a different sad state of affairs. Now where was I?... oh yes, TV... Nowadays we don't have mere television, we have interactive video gaming, which is supposed to help us parkies with balance and fitness. It's TV that, darn it, is good for you! Ever eager to mix the unmixable, in this instance fun, and Parkinson's Disease, I obtained a Wii and a balance board. I then plugged in, turned on, and prepared to enjoy a rollicking workout.
The Wii had other plans. It began by asking me a series of questions about my height, age, and weight. Then it asked me to step up on the balance board while it did a little calculating. That done, it proceeded to tell me I am 22 pounds overweight and 65 years old in Wii Years! I'm 52.
You know you are living in modern times when your possessions can insult you.
Terry Thomas was a British comic actor. According to Wikipedia, he was especially well-known for his work in the 1960's films like "Those Magnificent Men in Their Flying Machines" and "Monte Carlo or Bust". He was noted for his roles as a classic British upper-class cad and bounder.
Just when your jaded view has almost permanently hardened, along comes something so well done and so true it shocks you into a new appreciation of the reach of human creative expression. This is a video from the recent World Parkinson's Congress in Glasgow, Scotland. The Congress invited people to submit videos to dramatize and explain Parkinson's Disease " to raise awareness about Parkinson's and to put a face on the disease while having a little fun at the same time. Nearly 50 people from 15 countries submitted videos". This entry from dancer Pamela Quinn tied for the top spot. You can find links to all the videos here
Our band was taking a quick break, a man jumped on stage and took my hand. "I heard you on the radio he said. Then he dumbfounded me by calling my interview "Brave".
Brave? Me?
You must have me confused with someone else. Someone with nothing to lose. Someone who isn't worried every day that he is finally seeing the end of his ability to drive, to draw, to write, to make music, to make love, to do, to be. Someone like... whom? Like someone who hasn't been paying attention.
I've been paying enough attention to realize I am at least among the lucky of the unlucky. I respond well to the medications available. We have the insurance to pay for expensive pills and surgery. With continued luck and discipline, the worst will be held at bay while I go on appreciating what my friend Janet calls "The finer miseries of Parkinson's".
How different does that make me from anybody else? Who isn't pushing their rock up a hill? Who Lives more than a phone call away from tragedy? Who doesn't depend on the fine calculation of other drivers on the road to keep a trip to the grocery store from becoming a trip to the emergency room? Who doesn't carry some rogue cell, a bit of themselves that will rebel and fester until it overwhelms the life it is a part of?
Herman Melville wrote of the whalers in a harpoon party at sea. Fragile men in a fragile boat, rowing toward a Sperm Whale to kill it with a small spear of iron and wood attached to a rope. The rope threaded throughout the boat and when a whale was struck the line jerked alive with deadly speed. The rope could snatch away a life or a limb on board the boat with impersonal lethality. Melville knew that we all are surrounded by such ropes and thought that a whaler was at least fortunate enough to see them.
Most of us are at least dimly aware of these ropes. Much of what we do every day is spent at some level trying to elude or escape them. To see the rope is to fear it less, to know where not to step, to keep a hand clear. What is truly frightening is what you do not know: Where the whale is, what it will do next. Facing this is the bravery required of each of us, and it is the price of a good life. This price is the same whether you are diagnosed or not. Diagnosis is merely to be shown one of the ropes.
Bryn Williams maks the case for urgenccy at the recent World Parkinson's Congress in Glasgow. You can visit his terrific web site for more from this passionate and optimistic man.
Peter D-S here with the Parkinson's forecast for December. Looks like we can expect mild to moderate Parkinson's activities for the dark month of December. Heaviest activity expected, next week with a Telehealth presentation of the Tremble Cleffs (REALLY!) singing holiday songs and an account of experiences at the second World Parkinson's conference in Glasgow. Look for this event at Providence Hospital room 2401 Dec. 13 at 1:00. The following Saturday, the 18th of December3:30 at the Pioneer Home, we will have our annual Holiday potluck. Pam and I will bring something main dish-like, everybody else bring something tasty of your choosing.
Looking into January, we will have a special presentation from my buddy Jim Kerr, who will give us tips on balancing. Jim teaches juggling (among other things,) and balance is a fundamental.
Here is video of the speech I gave Nov 6 at the 2010 Hope Conference. The talk is about 30 min. Unfortunately the camera doesn't stray from me once, and the visuals that I incorporated into the talk will have to be imagined by you, the viewer. I will drop them into the text of the presentation that appears in preceding post to this one so that you may read it and experience them roughly as they occurred in the speech.
Here is my talk given to the 2010 Hope Conference in Seattle. This version is slightly adapted for print.
Home-made Hope: How to thrive now with Parkinson’s Disease
Eight years ago when I was diagnosed, I was told a couple of hopeful things. The first was that it was a good time to have Parkinson’s Disease. The second was that within 10 years we would have a cure. I still believe the first. But I do not wait any longer for the grand announcement that the cure is here. Have I given up hope? Not at all. But time is too short and too precious to wait for a cure. A cure that I now believe will arrive like our disease, slowly, stealthily, and incrementally.
I can’t let my quality of life depend on a chance that down the road someone somewhere will find my salvation in the bottom of a test tube. That will come some day, and we shouldn’t quit trying to make it happen. But that is something that I have little influence on. So I make hope myself.
What is hope? There are a surprising number of viewpoints. Take Emily Dickinson:
Hope is the thing with feathers? That’s a little weird, but it is poetic! And now, here with an differing view, German Philosopher Friedrich Nietzsche:
Hmmmm, probably more appropriate for the “No Hope” conference.
How about this, from former Czech President and playwright, Vaclav Havel:
”Hope... is...an ability to work for something because it is good, not just because it stands a chance to succeed”
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For Havel, hope isn’t just a mental state, it’s a capacity for action, intertwined with doing. Hope isn't just something you have, it's something you do. This is the area I want to explore.
Here is what I know about hope. Hope is what gets us out of bed in the morning. Without it, why would you bother? We need hope for a good quality of life every day when we get up, not in 10 years or 2 years or two months. Smart and resourceful and dedicated as they are this is not something the people in lab coats can do for us. When it comes to hope and Parkinson’s Disease, It’s up to each of us to make our own.
So how to go about that?
We can start with the idea that Parkinson’s Disease is transformative, Let's take a trip back in time to that glowing red-letter day when you got your diagnosis. Remember what it felt like?
Diagnosis is devastating to the person getting the verdict. Obviously, from that moment forward life is going to be different. Again. Parkinson's is transformative. But here’s the key: the transformation depends on more than the course of a mere disease. A big question is how will you handle it? Put aside the proximity or distance of a cure and the unfairness of it all. There is hope for you that you alone can create.
I was 43 when diagnosed. I wanted life to stay the same. I wanted to go on in my rare and wonderful cartooning career. I wanted to enjoy all the physical pleasures that I had come to think of as a right. More than that, I wanted to continue to be the husband and father I worked every day to be for my wife and son.
At the time, that seemed impossible. The words "Disease" "progressive" and "incurable" are toxic enough when used together to render the gentlest, most well-meaning words of comfort hollow-sounding. Not that people don't try. Following my diagnosis, I was visited by a friend who predicted a difficult journey ahead that would be at least partially redeemed by what I learned along the way. I appreciated these words of comfort as a well-meaning emotional placebo. A sugar pill offered to fend off painful reality.
But my friend was far more right than I could have guessed. If you're a little lucky, if you're willing and able to junk what you can no longer carry, if you're open to new paths to meaning, you'll be surprised at what you can salvage of life. And at what you can build. Like hope.
Over eight years experience, I found list of ingredients for home-made hope. Here are some that are critical. As Havel suggested, these are all activities, because hope is a verb.
Ingredient #1 Learn to adapt
You don't have the option to not change, you do have the option to adapt. And in adapting, you can open up new worlds. (By the way, that’s the kind of statement that sounded like B.S. before it applied to my life. But I have experienced it, and I know different now.)
The first area of my life PD tried to take charge of was my job as editorial cartoonist for the Anchorage Daily News. I began to feel the pain of repetitive strains that were compounded by the stiffness of Parkinson's. The struggle to continue drawing went on for years until finally, my bright and resourceful doctor of Physical Medicine told me he was out of ideas to keep me cartooning.
This was a double blow, first because drawing has been a large part of my self identity since I was eight. And second, it was my living. I wasn't ready to give it up to Parkinson's Disease. Fortunately, I knew something he didn’t.
I knew that there were electronic drawing pads that would enable me to approximate the correct posture of a typist while I was drawing. Using the pad, I could mimic that correct ergonomic practice, as opposed to my usual drawing posture.
When I pitched this idea to my doctor, a look of relief crossed his face. He smiled, and replied that it would work. And so far, it does.
And here is where my effort to cope led me to a new world of artistic possibility, although the forward leap began with a few steps back. Once I jumped from pen and ink to the computer, I set about trying to recreate my old look with the electronic pad and stylus.
Mastering Photoshop, the program that I use to draw on the screen was the first step. And that first step was a lulu. But that is where I really got lucky. My wife is not only a Photoshop ace, she is also a patient teacher.
Whenever I got stuck, bewildered, frustrated or exhausted, Pam would sort things out. Eventually I arrived at my goal of being able to produce work on the computer that was indistinguishable from my pre-computer cartoons.
When I arrived at that lofty peak, that desperately sought grail, that ultimate moment dearly bought with toil and frustration, that apex of mastery when I finally was able to reproduce my old style, I was rewarded with a moment of clarity. It hit me that...
It hit me that recreating my old look was a stupid idea.
Take a two thousand dollar machine, equip it with some of the most sophisticated software available, and turn it into a fifty cent pen. Brilliant, wouldn't you agree? That's when I decided it was time I joined the 21st Century.
Since then I have been on a full-scale creative bender, exploiting the graphic vocabulary the computer makes possible.To make along story short, I went from simple black and white cartoons which I had done for decades, to animated videos with full color sound and action.
In adapting to PD's attempt to hem me in, I was forced to remake myself artistically. Doing that stimulated a period of creativity that was as unanticipated as it was exhilarating.
Ingredient 2 EXERCISE I was vague about what lay in store after I got my diagnosis of Parkinson's disease in early January, 2002. But I knew it was bad. Preliminary forays to doctors and on the Web were daunting. I could look forward to progression of a creeping paralysis of voluntary movement. I faced loss of the ability to walk, to speak, to draw. A disease treated with medicines that work for awhile, and eventually bring on side effects as difficult as the illness. This is what I was told to expect.
The last thing I expected was the Spandex Angel. As I walked out of my doctor's office following my preliminary diagnosis, I had an eerie experience, almost a vision that I have come to think of as the visitation of the Spandex angel. The angel appeared before me, resplendent in garments of finest Spandex, vibrant with hues of a brightness not found in nature. The angel was both buff and ripped. Lo, its abs were like unto six packs, and its buns were of steel. And I was sore afraid. And stress did cause my Parkinson's symptoms to wax, and I did tremor with a vengeance. And the angel spake unto me with a great urgency, saying "Fear not, for though thou walk in the valley of PD, thou art not entirely helpless. Indeed thou hast a choice: Sit like unto a lump, inert and pathetic, and let this disease carry you down in an ever steepening spiral, or fight back against your insidious foe with exercise. This is thy choice: Move it or lose it!" Thus spake the Spandex Angel.
As it turned out, the angel knew whereof it spoke. As I poured on the exercise I noticed temporary improvement in my symptoms. And there are a growing number of exciting studies like those done by Dr. Jay Alberts. Rather than rehash his talk, let me just say exercise is a proven mood elevator. That's significant for those of us who have PD, which is accompanied by depression in roughly half the population that has Parkinson‘s. And exercise is cheap, rarely results in an overdose and doesn't have to be imported from Canada. Finally I’d like to steal a point from something Dr. David Greely said during a recent telehealth presentation. It was a point that rang true for me the second he said it. If you exercise, you will get better care from your doctor, from your caregiver and anyone else in your network, because you will send the message that you are trying. It doesn't have to be dramatic. Start with what you can do and work up. But show those who work to keep you going that you are willing to do your part. They'll love you all the more for it.
But take it from me, or take it from Dr. Alberts, or take it from Mississippi Fred MacDowell, "YOU GOT TO MOVE!" Ingredient #3 Beware the Ogre who says “No!”
Some say there is a “Parkinson’s personality” and one of the traits of this personality is inflexibility, a reluctance to try new things or vary routines. I found myself playing this role with such dogged predictability that I even came up with a name for this unwelcome alter-ego I called myself The Ogre Who Says “No” Who was this Ogre? He was the one who could be counted on to find an excuse to not do anything out of the routine. He had a million objections, many of them, seductively reasonable- we needed to save money, or we didn’t have time, or we needed to simplify. But this was just a cover-up for his true agenda: a walk down the path of least resistance to hastened decay.
The Ogre is a serial buzz killer. It’s important to find ways to say “Yes” for your sake and for the sake of those who care for you. Don’t let Parkinson’s Disease trick you into becoming your own jailer. I am constantly surprised to discover that I can do more than I think I can.
Ingredient #4 Put pride in its place
Yes, pride is important, but it is a two-edged sword. It can keep us functioning when we seem to have no other resources. But it can cut us off from help. Pride can especially become a stumbling block for men in dealing with depression. We men don’t like to admit that we are not in control of our emotions and will try to tough it out. To tell the truth when depression was stalking me I even got a cheap thrill out of it. I had the sense that I was capable of great depth of feeling ordinary people couldn’t know. I was a great tormented soul like some Beethoven of Parkinson’s Disease. Why I thought this was a good idea escapes me now. Clearly was time to get a grip, talk to the doc and get some help. The goal is to tame the Parkinson’s beast. Rather than taking pride in your toughness, take pride in coping as successfully as you can.
Ingredient #5 Inform Yourself
Every fact that you can master about this disease is another tool that you can use to cope. And like the rest of your body, your brain needs exercise. Why not give it a great big dose of the exercise it needs by gathering and mastering facts about Parkinson’s? Intellectual challenge is one way to help keep your brain functioning as well as it can. And let me put in a word for the value of learning for its own sake. One of the pleasures of my post- diagnosis life has been exploring the mystery and wonder of the brain. It’s a complex and fascinating part of ourselves that is seeing exciting new inquiries and insights.
Ingredient #6 Get involved with your local support group.
Everyone hungers for information after diagnosis. A thousand urgent questions crowd forward in a tumult that demands answers. If you’re looking for experts on coping with Parkinson’s Disease, someone with not only the time to help you, but the hard-earned experience with dealing with this beast day-to-day, year to year, participate in a support group. Each member is an authority on PD, through years of intimate contact. Or do you just need a sympathetic ear? A support group is your ticket there, too. And don’t overlook what for me was a significant unexpected benefit: Seeing people who cope with unimaginable tenacity and grace with what had seemed to me the impossible. People who had been doing this impossible task for years and years.
Also remember that you are one of the experts, you have knowledge that can help someone else. I avoided my support group for a long time, afraid of meeting the person I call THE SCARY OLD GUY WITH PARKINSON’S (SOGWP) This wasn’t a particular person, it was my idea of my future personified in anyone with symptoms of advanced Parkinson’s Disease. Bent, shaky and drooling.
Eventually a support group meeting came up that was so compelling, I went in spite of my fear. It was crowded, and I ended up with nowhere to sit but right next to a full-blown SOGWP The guy I had been avoiding did not avoid me. To my excruciating discomfort He leaned over and said something unintelligible in a soft voice. I said “Pardon?” He leaned over again, and repeated himself, just as unintelligibly as the first time. I asked him again to repeat himself. This went on until his wife kindly intervened, telling me “He said don’t wait to get speech therapy”.
I didn’t.
Even as far along as he was, he still made the effort to help someone else. Sharing your strength can give you an amazing boost that a friend calls a “Helper’s High”. This is not mere goody-two-shoes theory. I have tested it myself and am surprised at how well it works Ingredient #7 Care for your caregiver
If you are lucky enough to have someone who will stay by you in the face of all that may come, then you are lucky beyond all measure. Take care of that person. You are a big job, and you are worth it. But from time to time your partner will need a break. Understand this and make it easy for them. And anything you can do to help around the house will be deeply appreciated, especially by someone aware of what you must work through to get something done.
Ingredient #8 keep your sense of humor
This is what your sense of humor is for. It’s for coping with pain, for keeping things in scale. PD tries to take so many things from us, don’t let it take laughter too. There's nothing funny about someone with no problems. Unless you mean "funny strange". But Parkinson's? Parkinson’s is a side-splitting, non-stop laugh-riot! The slapstick alone around my house is at least Three Stooges quality, and I’m aiming now for Buster Keaton. And did I ever tell you about Pam's idea for the Parkinson's Bobble-Head Doll?
Ingredient #9 Hang on, help is on the way!
Nobody has all the answers, and everybody has their own particular type of PD. But I’ll bet that most of what works for me will work for you. That I work at all is testament to the dedication of those people with Parkinson’s, caregivers, doctors and researchers that have been at this since long before my first tremor appeared.
The techniques medications and surgery that help keep me going are the fruits of the labor of many smart, persistent amazingly skilled people who for some reason have focused their lives on making our lives better. Bit by bit they are cracking the Parkinson’s code. The day will surely come when people no longer suffer the pain and indignity of this cruel and cunning disorder. With all that they have already done for us, combined with what we can do for ourselves and others, we have every reason to believe daily in waking to better tomorrows, every reason to hope.
Margaret Bourke-White was a photographer who had an eye for images that would become iconic. Her Depression-era photos are eloquent in their simple black and white portrayal of a tough and quietly suffering people. She went on to make powerful photographs during world War II. As the war wound down in Europe she documented the horror of the concentration camps. The atrocity must have struck at her with particular force, as her father was Jewish.
Her career was a combination of art and high adventure. The website Gallery M (Where you can see some of her photographs) reports
During her unique career, Bourke-White was torpedoed in the Mediterranean, strafed by the Luftwaffe, stranded on an Arctic island, bombarded in Moscow, and pulled out of the Chesapeake when her chopper crashed. She was the first Western photographer to document Soviet industry after the revolution, to create a travelogue of Czechoslovakia and other Balkan states just before Hitler moved in to ignite World War II, and to be stationed in Moscow just before Germany bombed its former ally.
She died at 67 years of age from Parkinson's complications. A person of unusual toughness, she lived with the disease from 1956 through 1971, benefiting from then-experimental surgery. She left behind a remarkable collection of fine photographs as well as an example of courage and tenacity that sets a great model for all of us, not just those who have Parkinson's Disease.
Well it looks like mum's the word for PD patients who are in the act of walking. According to scientists at Florida State University those of us of the Parkie persuasion are increasing our risk of falls if we jaw while jogging. No word if screaming while you fall also amounts to the kind of multi-tasking we should avoid. But if you ask me, I say, scream. What have you got to lose?
On considering this latest bit of information it hit me that there are vast implications in the Things for Parkinsonians to Avoid Doing Department. Just to be helpful, I have compiled a handy list of additional potentially hazardous forms of multi-tasking for we Parkies to avoid. NB: many of these have yet to be studied by researchers, but I am rushing to publication with them anyway. NB2: This is NOT an exhaustive list, and you should not conclude that just because it's not listed that a particular form of multi-tasking is in any way safe or endorsed by this blog. When in doubt, assume the fetal position and refuse to move. Wait, that would be multi-tasking. When in doubt, just assume the fetal position. Call me sloppy, but for heaven's sake, not while you are walking.
List of Multi-Tasking No-Nos
Rubbing BBQ sauce in your hair while sticking your head in the mouth of a lion or other large predator
Yelling "FIRE" while in a crowded theater (unless, of course, the theater is on fire)
Greeting your friend John with a hearty "Hi, Jack!" while standing in a TSA line
Petting a porcupine while chewing gum
Tugging on Superman's cape while spitting into the wind
Pulling the mask off that old Lone Ranger while messing around with Jim
Drinking and unicycling
Operating heavy machinery while sleeping
Murmuring your girlfriend's name while making love to your spouse
Murmuring your spouse's name while making love to your girlfriend
Kicking sand in the face of a bully while being a 98-pound weakling
Yelling "FREE BIRD!!!" while attending the symphony
Acting as your own attorney while having a fool for a client
Repeating "Hide me, The monkeys are in the control booth!" while undergoing a psychiatric evaluation.
French-kissing an ostrich while either sober or inebriated (either of you)
Laughing maniacally during confession
As I mentioned above, this is not an exhaustive list. If you notice any egregious omissions, please post a reply with your multitasking no-no. If you have a complaint, just give me a call when you're out walking.
The daylight hours are growing shorter. Ok, you didn't need me to tell you that. But maybe you'll prick up your ears at this: The Northwest Parkinson's Foundation will favor us with another interactive Telehealth presentation that may be viewed live in room 2401 at Providence Hospital's new cancer wing. The date will be October 11th, the time 1:00pm. The topic will be Addictions, Compulsions and Prioritization with Parkinson's. For more info, call 1-877-980-7500. For a wrap-up of the last Telehealth confererence, look here.
For our October 16th meeting, I plan to give a sneak preview of the speech I have been invited to give at the Hope Conference in Seattle this November. I was asked to provide a patient's point of view and I came up with a multi-media presentation called "Homemade Hope". I'll be looking for your feedback to make this as successful a presentation as possible. Again, the date is October 16, 3:30 in the afternoon at the Pioneer home.
A band of die-hard Parkinson's information fanatics were treated to a display of fact-packed, well-thought out answers to questions from around the Northwest fielded by Spokane doctor David Greely. The Q&A was the centerpiece at yesterday's telehealth symposium. The symposium is a monthly interactive broadcast hosted in Anchorage by Providence Hospital. The supporting cast, in the form of small gatherings of attendees from Moses Lake to far-flung Anchorage asked thoughtful questions, and provided a certain amount of sympathetic comic relief as we watched one another struggle with technology using our PD-impaired bodies. (Extra points for the drama provided by the solitary elderly lady who spent several minutes under the table on camera out there somewhere. It was a relief to all of us when you reappeared in your seat and returned to noisily scratching your pencil on what I sure hope was paper.)
While a few questions may have vanished into the haze of the technological Bermuda Triangle, some significant points emerged that were well worth the time and effort of attending. Among the most compelling for me:
Muscle Cramps: can be treated by proper hydration, metabolic balance and addressing sleep problems, Which is, duh, the way you would treat them in a patient without PD. Sometimes we're not so special.
Eating and Pills: According to Dr. Greely, nine out of ten people with Parkinson's do not find any difficulty with this. For those that do, he still recommends taking your meds with a small bit of cracker or other non-meat to cue your digestive process to go into action. A pill is not usually enough in itself (unless you are taking some mighty big pills, Chester) to prompt the stomach to empty and push your medicine down the line to your intestines where it can be absorbed into your blood.
Stem Cells: Two thoughts here, relief from this direction is years down the road if it is to come at all, and the problem in the technology is not installing the cells, it's regulating them so that they produce the proper amount of dopamine in the brain. Dr. Greely likened it to the famous "Sorcerer's Apprentice" scene from the Disney Movie Fantasia. First you have one broom, then two, then four, then eight, then chaos.
Exercise I see you rolling your eyes out there. At least that's one part of you that's moving. I know that I harp on this subject ad nauseum. But Dr. Greely made a new point that rang true for me the second he said it. If you exercise, you will get better care from your doctor, from your caregiver and anyone else in your network of care, because you will send the message that you are trying. It doesn't have to be dramatic, start with what you can do and work up. But show those who work to keep you going that you are willing to do your part. They'll love you all the more for it.
OK Parkie Pals, limber up those fingers to mark the following dates on your calendars: TODAY the 13th, 1:00 Telehealth Seminar interactive info session on PD at Providence hospital second floor of the new cancer wing.
Sept 18,Saturday at our regular meeting at the Pioneer Home at 3:30 we will have a presentation on Deep Brain Stimulation (DBS) for Parkinson's Disease from Swedish Hospital in Seattle. Peggy Short, Advanced Nurse Practitioner and DBS programmer will be our main guest. This meeting will also be attended by Keely Daily of Medtronic, the makers of the deep brain stimulator. Unfortunately Dr. Ron Young, a DBS surgeon had to cancel his participation.
Remember our DBS motto, "You need PD like you need a hole in your head." I'll see you there.
Oh, one more thing, I festinated across an excellent blog for those of you who have the exalted, or exhausted, status of PD caregiver. The blog is "Slow and Easy" you can find it here
Congratulations! You’ve got Parkinson’s Disease! Yes! You’ve hit the disease jackpot! The bells are ringing, the lights are flashing the crowd is hysterical because Parkinson’s is no mere disease, it’s a whole cream-center assortment of ailments packed into one! It’s a disease-a-ganza, a smorgasdisorder, a never-ending buffet of indignities, inconveniences and setbacks large and small.
Parkinson’s is no simple sickness. Instead it is a malady made up of a host of disorders that normally would be considered diseases themselves. But in Parkinson’s, they are mere symptoms, a part of the larger picture.
What do I mean by a “host” of disorders? I'll just run through a number of them off the top of my head. For starters, you look as though you are taking this stoically and with an Olympian calm. But that’s because you have lost the ability to use your facial muscles to express your inner feelings.
The inability to use your facial muscles this way, when it occurs on its own, can be a disease called “Moebius Syndrome”. It is rare, but it is no less a disease for that. One effect of this disorder is to cause its victims to lose their ability to express emotions subtle or dramatic. To have a frozen face is to present an eerily blank slate to the world. A world that often concludes that you are unreadable because you are up to no good, and treats you accordingly.
That should be plenty for any disease, but Parkinson’s is an overachiever. Parkinson's is just getting started!
So to frozen face, let’s add dystonia. Dystonia is the involuntary flexing or cramping of a muscle. Not only can this be painful, it can result in a person a enduring twisted hands or other body parts held at bizarre angles. Nasty enough, but only one marcher in the PD Parade.
Marching right behind dystonia, we have depression. Like PD, Depression can exhibit itself in many ways: the blues, lethargy, and slowness of movement are some. And on they come, Parkinson's sufferers are hosts to many more combinations of what could stand on their own as full-blown diseases. There's urgent bladder, tremor, cognitive impairment, sexual dysfunction, even loss of the sense of smell.
There is some good news here. Many of these problems can be alleviated for many years with proper medication and careful management of exercise and diet, But this industrious disease refuses to quit there! On top of all the first level effects, there exists a second tier of disease-like complications that set in over time from the medications. For instance?
Well, how about dyskinesia? That's the dance-like uncontrolled movements made as the brain becomes less able to handle the levels of medication in your system. Suddenly, you're moving too much instead of not at all. This does have its benefit on the exercise front. I lost at least ten pounds while undergoing endless bouts of unwanted movement. But it complicates anything requiring an accurate hand abominably, and you move in a spastic ballet that looks like Joe Cocker dancing Martha Graham.
But PD isn't all physical torture. Drug side effects can also involve mental disturbance. Because PD medication is involved with dopamine, which regulates feelings of reward as well as movement, the introduction of dopamine-like drugs can lead to compulsive addictions to things like gambling or sex.
Many, but not all these disorders can be held at bay with brain surgery. That's the good news. The bad? Many of these disorders can be held at bay, but it takes brain surgery.
This is by no means an exhaustive list, though it is an exhausting one. Oh, which reminds me, one more Parkinson's complication that is a disease in itself. Narcolepsy- the sudden dropping off into deep sleep, a surprise nap attack that strikes all at once without warning. But then again, with all those diseases on board, is it any wonder a person needs a little shut-eye?
Here's an approach that hasn't yet been tried for Parkinson's disease. And no wonder. Are you ready to warm up to trusting the healing powers of the Gila Monster? Scientists in Britain are developing a treatment for Parkinson's disease that incorporates Gila venom (or a sythetic substitute). They say the stuff works, stopping the cell loss characteristic of the Parkinsonian brain, and even improving symptoms. They cited success in 5 different rodent models of the disease. So once again, exciting news for rats.
For humans, further developments will depend on the results of a small trial being organized in Britain. One hopeful note is that this drug is already in use for diabetics, which means it can at least be used safely in treating humans.
And think of the boasting potential! "I'm a rip-snortin' Parkie with venom in mah veins! The juice of the deadly Gila Monster is mother's milk to me!"
You can have the first taste. No, really, I insist...
OK folks, time to dive once again into the wonderful world of Parkinson's vocabulary. (Previous posts on Parkinson's vocabulary here,here, and here) And isn't it like Parkinson's to sabotage your ability to speak at the same time it hands you a handful of shiny and slippery new words to master? Where to begin? Well, here is a confusing term "Parkinson's Disease Support Group" What's confusing about that? I hear you asking. It's plainly a group that comes together to further the cause of Parkinson's Disease, work to spread it and try to perpetuate it at home and abroad. In short, to support Parkinson's Disease, just like it says.
Well, what's confusing here is that is just the opposite of what these groups do. They actually exist to help those afflicted with Parkinson's to cope with their ailment and many raise money and work in other ways to end this scourge forever. So check out your local support group, and while you are there, see if you can get them to change the name to something more accurate, like Parkinson's Disease Patient Support Group. It will probably help immensely with membership.
Here's a word you don't see everyday, though as a person with Parkinson's Disease you probably experience it all the time: Hyposmia- the reduction of your sense of smell. Hyposmia? Well "Hypo" translates roughly as "not enough of" like in "hypothermia". So "osmia" must mean "smell" or "stench". Hold on while I check that out... and darned if "osmia" isn't Greek for "Smell". As it turns out "Hyposmia" is related to the word "Anosmia" the loss of your entire sense of smell. Again we can break anosmia down to its parts to get the meaning- "A"(which means "without") + "Nosmia" which is obviously (OK, I'm guessing here) Greek for "nose". Which gives us "Without a nose" or to have no sense of smell!
Another fabulous PD term is "cogwheeling". It applies to the lack of smoothness of motion in our joints, almost as though they had cog mechanisms instead of the standard-issue flesh and bone. While we're on the subject of mechanistic metaphors for Parkinson's, allow me to introduce you to a fine coinage my wife came up with: "Pinballing". This is a term she uses to describe my overmedicated, underbalanced locomotion through space, bouncing off this, running into that and generally threatening havoc wherever I lurch. He slams into a table!DING! DING! DING! 500 points! Sets a chair to spinning! (Light strobes) 650 points! bounces off the wall! BUZZ! 250 points per contact! And it looks folks, like... YES! ...Congratulations! an all-time high score! What do you win? Lucky YOU! You win another turn.
Hello friends, Here's what's coming up in the Anchorage Parkinson's world. August meeting will be held the 21st, Saturday at 3;30in the Anchorage Pioneer home. Betty Berry would be glad to lead a concurrent meeting for caregivers, She asks those interested to please email her at (bberry2205@gci.net). She also writes
"I received a notice in the mail regarding a Senior Housing Fair sponsored by Providence to be held at the Senior Center Thursday, August 19.
Learn about housing options available in Anchorage and Mat-Su for seniors in the areas of : Independent housing - Assisted living - Skilled nursing care and more -(so states the notice.)
Thought this might be of interest to those in the Parkinson Support Group. Our upcoming meeting will be open phones, sharing tips and experiences."
For the September meeting we will have a group from Swedish Hospital in Seattle including Peggy Short, Advanced Nurse Practitioner and DBS programmer, and Dr Ron Young, a neurosurgeon with nearly 30 years of DBS experience, who is now practicing at Swedish, This meeting will be held the 18th and will also be attended by Keely Daily of Medtronic, the makers of the deep brain stimulator.
If you have a topic you would like to explore at a future meeting please email me
dunlapshohl@gmail.com
A final note, Yoga Instructor Karen Greenwood will soon be offering a Yoga class for the movement impaired through her Anchorage Studio. We will offer to pay class fees for members of the Anchorage Parkison's Support Group. Yoga is recommended for flexibility, strength and balance. Any of you who feel like you are better than average in these important areas, raise your hand. No hands up? Great, I'll see you all there! More details to come.
Excitement! Suspense! Harrowing adventure!...That's what's in it for me. What's in it for you when I speak at the Hope Conference in Seattle? I plan to look at the idea of "Home-made hope, lessons learned in spite of myself in rebuilding your life after diagnosis". The Hope Conference is an event for people with Parkinson's Disease, their families and care givers. Here is a summary from the American Parkison's Disease Association Seattle Chapter
Saturday, November 6, 2010
Seattle Airport Hilton Convention Center 17620 International Blvd Seattle WA 98188
The American Parkinson Disease Association,Washington Chapter, and the Northwest Parkinson's Foundation are co-hosting the region's largest educational symposium for patients, family, friends, and caregivers.
Guest Speakers: Dr. Jay Alberts, Biomedical Engineer Assistant Professor at Cleveland Clinic, Lerner Research Institute "Is Exercise Medicine for Parkinson's Disease?" Dr. James Leverenz, Associate Professor, Depts. Neurology and Psychiatry, University of Washington "Research Update: Biomarkers and PD" Dr. Monique Giroux, Movement Disorder Specialist, Medical Director of the Northwest Parkinson's Foundation Wellness Center "Wellness Choices for Brain Health" Peter Dunlap-Shohl "Homemade Hope, How to Thrive Today with PD" Matt Ford, PT, MA, PhD, University of Alabama at Birmingham "Music is Exercise for the Parkinson's Brain"
So it's time to turn in after another day of tremors, dyskinesia and muscle stiffness. As a hard workin', hardly workin' Parkie, you're ready for a well-deserved three or four hours of sleep before your nightly high-stakes race to the toilet. Well not so (pardon the expression) fast, bradykinesia boy. It would be un-parkinson's to expect any part of life to be unmolested by this all-pervasive and all-perverse malady.
It seems that although we people of the Parkinson's persuasion do not have the liberty to move freely during the day, our addled nervous systems grant us the unusual ability to physically act out our dreams. Why is this an unusual ability? Well, humdrum, everyday, normal people have a mechanism that restricts motion while they sleep. This keeps them from damaging themselves, or others, while acting out their dreams.
In still another of the ironies of Parkinson's Disease, a person who has Parkinson's may paradoxically act out their dreams. Which, as you may have guessed I did this morning.
Let's join my nightmare just as I am about to deliver a desperate blow to a lethal and deranged cab driver. It's the one chance anyone has to stop this madman. Riding a surge of adrenalin I swing hard for his head and wake on the jolt of the abrupt connection of bone to bone, suddenly jerked alert by the pain in my hand as it slams into my cell phone that a second ago had peacefully rested on a box next to my bed. The phone flies off the box and skips across the floor into the kitchen, seemingly anxious to put as much distance as possible between itself and the unpredictable violent lunatic in the bed.
Note: At a recent APDA-sponsored Parkinson's Disease seminar a speaker suggested that one way of coping with bad news is to realize that there are people who have it worse than you. Fair enough, but somewhere in this weary world there must be the ultimate loser, that last guy whom everyone else is fortunate not to be. As a public service, Off & On has dug up this hapless schlemiel, one Herb Sleeper of Fargo, North Dakota. The following is his obituary as it appeared in the Fargo FreePressArgusChronical Weekly Shopper.
Relatives of Herbert (Herb, Bert) Sleeper are pleased to announce the passing of their late father/husband/brother/cousin/uncle. Members of the family were universal in their sense that "A great weight has been lifted from our shoulders" as his brother Harold (Heavy) Sleeper was eager to tell this reporter. "For starters, he lived in Fargo" his brother continued "If you could call that living". Harold fondly recalled how when they were young they would roam the wide plains at will, getting bitten by ticks, stung by bees and assaulted by motorcycle gangs. "All God's creation seemed to be against us in those days" he said, his eyebrows dancing as he recalled how his brother had been struck 12 times by lightning."Not uncommon for those of us living in 'The lightning strike state' but a bit unusual for just one day" he said with a pimpish grin.
"Maybe it was the lightning that caused his Parkinson's" his wife Shelly said, "Or maybe it was the pesticides that he routinely drank after hearing a friend complain of a stomach bug. Whatever. Of Herb it can be truly said that he took his early-onset diagnosis lying down" She remembered with clear distaste how Herb would complain about his symptoms in a voice that grew softer and softer by the month. He wanted speech therapy", she laughed as she recalled, "But we were all against it".
Still she was unable to disguise a note of admiration as she looked back at Herb's fierce struggle to not do anything about his deteriorating condition. "He'd blow off taking his pills, missed Doctor appointments, and hey, forget exercise!" she smiled. "He said he'd die before he joined a support group which come to think of it, I guess he did. His one accomplished goal in life. His only goal now that I think of it. Pitiful".
Herb will be remembered as a great indoorsman, who liked nothing better than rising early to hunt for his remote. "He and that damn remote were inseparable" recalled his wife. "It was agony waiting for him to change channels what with his tremors and slowness. We used to watch infomercials for hours as he attempted to aim the thing at the TV. When there were no good infomercials on, he would lie endlessly on the couch moaning inarticulately to himself and any unfortunate soul who happened near. No matter how bad things got, Herb was willing to share the misery. He's better off now that he's dead. Hell we all are." No services will be held . In lieu of flowers the family asks that you simply send them money, unlike Herb, therapy ain't cheap.
Parkinson's is like having a job you never clock out of. It's a combination of clerk, (what pill am I on now? When do I need to order more?) researcher, (what can I learn about this new symptom, that proposed medication, this new technique, that new facility?) dietitian, pharmacist and any number of other specialties that crop up as you make your way on the PD journey. The hours are long, the pay is laughable, and don't get me started on the health plan.
Unfortunately, the reasonable response of "Sorry, I'm not qualified to have Parkinson's Disease" will not deter this ambitious disorder from selecting you for the position. This means that we have to grab every opportunity for learning. Here are highlights from several recent sessions of "on the job training" that I was able to take advantage of.
The first was a web conference for people who blog about Parkinson's Disease that offered us a chance to ask questions of an academic neurologist. The presentation was somewhat marred by the discussion of about PD basics that were familiar territory for those of us attending. The presentation only came alive for me at one point. The doctor was asked about falling and his reply was offered with a note of urgency that gave it impact. His answer was that once you start falling, there is not much that you can do to improve your balance. His advice? A newly diagnosed patient should take up Yoga or some other balancing discipline as soon as possible so as to be so, as he put it "overcompensated" in their balance skills that the disease will have much farther to go to erode this ability to the danger point. This was the first time I have ever heard of overcompensation used as strategy outside of Wall Street wage practices. If overcompensation is good enough for them, it's good enough for us!
Next up were a pair of presentations held in Wasilla, made possible by the Washington Chapter of the American Parkinson's Disease Association. A shout out to them, especially Evie, for going to the trouble of coming all this way and bringing such excellent speakers.
The first to talk was Doctor of Pharmacology Steve Setter. During a presentation enlivened by humor, Dr Setter left us with a number of excellent thoughts for managing medications. Among the tips:
Know your pharmacist The complexity of the Parkinson's family of disorders along with other problems you may have, for example abnormal blood pressure or heart problems means that you need someone on your team who is looking at what all your doctors are doing with all your medications. Where this is not possible, for instance when you must mail order your meds, it behooves you to study the reams of boring info in tiny type that comes with the pills. See "researcher" above.
Know the shape, color and size of your medications if something looks different, ask. Pharmacists do make mistakes sometimes.
With or without food? Efficacy of drugs and the ability to tolerate them are often pegged to this issue.
Always take pills with fluids make sure that pill goes where it can be readily absorbed instead of lodging in your throat.
Know the optimal timing of your doses here Dr. Setter offered an interesting tidbit: If you know that you are going to be stuck in a car or airplane and you don't want to be dyskinetic the whole time alter the timing of your dosage to allow for that.
Over the counter medications can have interactions with prescription medications. An example cited was Tylenol pm, which contains benedryl, this, when crossed with PD medications that make one sleepy can add up to an exaggerated snoozing effect.
Dr. Setter offered the National Parkinson's Foundation's drug handbook (Download it here) as an especially helpful resource.
One final point that Dr. Setter made was that we need to be careful about giving advice to other people with Parkinson's based on our experience. Because every case of PD is different, and because PD meds act differently in different people at different stages one person's experience may not be comparable to another person's.
Dr. Setter was followed by Dr. Kris Rhoades, a neuropsychologist practicing at Virginia Mason Hospital in Seattle. Dr Rhoades spoke on cognition, depression and sexual dysfunction in Parkinson's Disease. As usual this hard-working disease is doing its darndest to undermine us in multiple ways. In the area of cognition Parkinson's affects the frontal lobe of the brain, impairing what doctors call "executive function" and what you and I call multi-tasking, planning, speaking the ability to retrieve memories and the ability to adapt. With its habitual irony PD attacks the very areas we need to use in order to cope successfully with it.
So how do we work against this? Some Alzheimer's medications help, along with our old friend exercise and the practice of exposing oneself to new ideas and situations, fostering flexibility in our brains. Personally, trying to do all of the exercise and brain stimulating I can and hoping it takes a long time to catch up with me.
Dr. Rhoades then moved on to depression. We know it is common in Parkinson's disease, and that the lack of dopamine, which is one of the main feel-good chemicals in our brains is a major hallmark of Parkinson's Disease. So the nature of our disorder makes us easy targets for depression. Depression in Parkinson's is often characterized by slowness, impaired concentration, weight loss, sleep disruption, diminished appetite and decreased sexual desire. In my experience it is also marked particularly in men with denial. I asked Dr. Rhoades if he could suggest any strategies to break through to a depressed person and get them to deal with it. His Zen koan-like answer: "How many neuropsychologists does it take to change a light bulb? Only one, but the light bulb has to want to change".
On dealing with depression, Dr. Rhoades said that anti-depressants give us a window to deal with the problem, implying they are a temporary solution to the problem. Beyond advocating exercise, which my reading and personal experience confirm help quite a bit, I don't recall much that he offered to go beyond them. And if the depression is the result of some chemical imbalance triggered by our disease, why not continue to use them as more than a stop-gap?? Dr Rhoades, if you are reading this, I welcome comment.
From depression and dementia, it was on to sexual dysfunction. Dr. Rhoades took on some myths and barriers to understanding and coping with this problem. Among the myths: Older adults do not want sex, older adult sex will be dysfunctional, and that older adults cannot be treated for this problem. Not necessarily so, says Dr. Rhoades.
He went on to outline some special areas of difficulty for PD patients: Movement impairment, changed appearance, masked face, sleep disturbance, fatigue, and change in roles in the partnership involved. He also listed differences between the sexes when it comes to sex and PD. Men still become aroused, but then have erectile failure. Women are less easily aroused. Spot the PD irony here? Every muscle in your body becomes stiff except the one you want to become stiff. Parkinson's, you crazy jokester you!
What to do? Vow of celibacy, anyone? Me neither. That leaves us with the fall-backs we are all at least dimly aware of. For men, those pills which everybody is spamming you about constantly (talk to your doctor.) Oral estrogen, creams, lubricants and additional stimulation and foreplay for women. Above all Dr. Rhoades advocates talking with your partner. Communication you may have gone without in the past is now imperative. A good reason to consider speech therapy!
Dr. Rhoades asked that we recognize pragmatics, that we acknowledge emotional stress, consider demonstrating love in non-sexual ways and talk frankly and openly about sex with our partner.
That's all from this edition of on the job training here at Parkinson's University (P.U) Let's conclude with the P.U. Anthem:
For Parkinson's we won't sit still, Though long the climb and steep the hill Until we've popped our final pill, P.U. we'll keep learning. Depressed and slow, dysfunctional too Still we raise our glass to you We'll kindle hope and rise anew. And keep the home fires burning.
A reader just passed on this fascinating New York Times story that deals with the tremendous amount of non-verbal communication that people transmit with subtle facial cues. Cues that we people with Parkinson's Disease are often unaware we no longer send. (You can find an earlier piece that I wrote on this subject here)
This is a valuable reminder that if we do not understand and somehow compensate for the meanings and nuances that we do not transmit because of our frozen faces, we are likely to encounter more than misunderstanding, we may be dismissed as dull, or perceived as angry. Which of course we may be, but who wants to start with that as the default setting for their face?
The article discusses several strategies that people use to get around the problem of the paralyzed face. Unfortunately some of these, such as the exquisitely pitched voice, or the well-tempered laugh, are difficult for those of us with Parkinson's to execute. It's important to be aware of this and work out compensating strategies. I've found it useful, even necessary at times to explain my poker face. People may assume that if you appear to be hiding your emotions, there is some deep and nefarious reason for it, and it puts them on their guard.
How important is a facial expression? So important that it can be read across species lines by our pets. Dogs are great students of humanity (cats don't give a rat's tail) and can learn to mimic a "social smile" I know this because my old dog, the legendary Sadie, learned to do it. We came home one day from work and, in addition to the customary leaping and tail-wagging, we were greeted by a slight curling of her lips. "We've got a grinner dog! Pam exclaimed, and from then on whenever she would start with one of her peculiar little grins we would smile back with all the wattage we could muster, until she mastered a wide grin that, if you didn't read the rest of her body language, bore an alarming semblance to a snarl.
How do I know that this was a "Social smile"? I saw her use it as one, just as a human would. This was years ago on a ski trip that took two days. On the morning of our second day we emerged from our chilly sleeping bags and set about cooking a hot breakfast. I don't remember exactly what we fixed, but to a cold and hungry dog it must have smelled of heaven.
My friend Peter loaded his plate up, then set it down to fetch something. Sadie crept quietly up from behind and was about to devour his breakfast when Peter turned around and caught her, unleashing a fusillade of angry words. Sadie retreated about ten feet, then turned around and gave him the biggest "Who me?" apology grin of her career. It was a brilliant deployment of a facial cue, and it worked, getting her off the hook.
A hook that impales me frequently now that I must concentrate and remember to smile. It's easier when I remember even a dog will do it.
Hello Friends, Can it be? I think it's... YES! Time for the annual picnic. We've had a year to recover since the last one, so the moment has arrived. Put your best feed forward, and step up to the plate. Once again Pam and I will grill some buffalo, you bring whatever you think you prepare well and enjoy eating- it's potluck roulette at the casino cafe!
Here is the essential information Who: Anyone with an interest in Parkinson's Disease and an appetite When: Saturday June 19th, 3:30 in the afternoon Where: Pam and Pete's palatial Parkie Playground, 9601 Elmore Rd. That's just South of the intersection of Abbott and Elmore Rd. Please alert us if you plan to come so that we have a rough idea of the amount of food we need. Questions? Call 350-9691 We hope to see you there!
(Above, a picture of me sent by friend Scott McMurren. It was shot from his car when he happened across me aboard my recumbent. In his typical kindly way, he titled this "Riding Nerdy")
Although I am crazy about bicycling, my earliest memory of riding is not a good one. I was maybe six or seven and was just learning on my sister's hand-me-down royal blue Raleigh. Before me, the open road. Behind me, my mom, running as I pedaled, her hand gripping the saddle to steady me. Only... what's this? Applause? That's Mom clapping! That can only mean there is nothing holding me up! Exactly like Wile E. Coyote walking into thin air off a cliff, when I became aware that there was nothing holding me up I went down hard.
I've had numerous spectacular falls since then, including one that left my right cheek impaled by an old rusty aerial from a car radio, and another when I smacked into a woman who was sharing a joint with her boyfriend on the path down from West High hill. And now that I have Parkinson's Disease I expect to fall from my bike frequently.
Yet I don't.
Even more mysterious than the human ability to balance on two skinny tires while hurtling forward is doing this while your movement is compromised by Parkinson's Disease. Recently a small sensation was kicked up by a report that a Dutch man with advanced PD was barely able to walk but rode his bike six miles per day (you can see him tremoring up a storm, then riding his bike here)
This is a case where the patients are way ahead of parts of the medical community. I doubt this news shocked Davis Phinney or Doug Bahniuk, or any of a great number of parkies who pedal.
Like them, I feel freest and most like my old self when on a bike. But what I didn't expect was all that biking could restore.
Lately I have been struggling with my voice, partly because new settings on my deep brain stimulator seem to interfere with my brain's vocal centers. My speech can quickly deteriorate into rushed and indecipherable syllables. And my singing, to use a decipherable syllable: Oy!
So I was surprised when about 45 minutes into a 2 hour ride yesterday when I found myself singing in the saddle with better pitch and strength than I had been able to muster for months. I easily warbled "Pancho and Lefty", "The January Man", and host of other songs from my personal hit parade. When I launched into "Poisoning Pigeons in the Park" I envisioned a full-blown musical. In the show-stopping big production number the kids on a passing school bus joined in with four-part harmony on the chorus while a trio of street-corner inebriates doo-wopped and a bevy of meter maids high-kicked in between writing tickets. All this only slightly marred by gasps for air.
That exercise can at least temporarily improve PD symptoms is confirmed by exciting work done by Dr. Jay Alberts of the Cleveland clinic. But it's one thing to read about the amazing research results that Dr. Alberts is reporting, or even to see video. It's quite another to find yourself flying ahead on two skinny tires, singing your fool head off, and held up against all belief by an invisible hand.
Everyone wants to fight Parkinson's Disease. I've used that pitch myself. But I have come to wonder if "fight" is the word we want.
For one thing, thanks to good science and good care, people with Parkinson's can expect to live as long as those who haven't got it. If, like me, you are in your 50s that means perhaps three decades of fighting ahead. That is an exhausting prospect.
Furthermore, for all the strategy and discipline required of a fighter, in the end fighting is about force and really, how far is that going to take you? What's the plan? Punch Parkinson's in the nose? Good luck with that.
Parkinson's Disease is not a thing or a person. In fact in its most notable aspect it's the very absence of something, dopamine, that causes the symptoms which we are bound by. And even these symptoms are often described in terms of what is gone, what no longer exists, the ability to move freely, to smell, to balance.
To fight Parkinson's Disease is to fight phantoms. This is a terrible form of asymmetric warfare, because though you can't fight phantoms, they can conquer you.
In making our condition into a struggle with a tireless behemoth we run the risk of asking too much of ourselves, and too little. To cast the job of living with PD as a battle with this implacable and, let's face it, undefeated foe, is to set yourself up for failure. Why not look for other metaphors that might be more fruitful?
How might we think of it? We can approach our journey through Parkinson's Disease the same way Phillipe Petit approached his high wire walk between the towers of the World Trade Center. Petit's walk on the wire required discipline, intelligence, courage, and above all balance. (He also threw in a sizable measure of artistry, but I'm trying not to ask too much.)
Discipline is what we must have to deal with the rigors of living while adhering to the routines that our illness requires of us, the pills, the mindfulness in speech, the necessity of knowing when to say no, and just as important, when to say yes. Intelligence? Cultivate a thirst to know all you can about PD. Every fact is a tool to help you live better. Courage? Courage is a tough one. It helps to have others around you that must master the same terrain. That's what the support groups are for. Balance, in the sense of knowing your limits and yet pushing against them is something that we all need to practice. The sooner the better.
Can these skills enable you to live well with Parkinson's Disease? Much depends on you. But they did carry a man through the air high above the hard and busy streets of Manhattan not so long ago.
Here is the PD forecast for May and June. May 10 Telehealth Session
There will be a Telehealth Presentation at Providence Hospital rm. 2401 at 1:00 p.m. May 10. The topic for this edition of these interactive sessions will be "Deep Brain Stimulation" You can find out more by calling 1-877-980-7500, and you can find out even more by actually going!
May 15 Support group meeting On May 15th our regular meeting will be a visit with Bill Bell, co-founder and director of the Northwest Parkinson's Foundation. Bill will fill us in on what the Booth Gardner center in Seattle can do for people with Parkinson's and, as a veteran observer of the PD world, he will give us a view on the current state of that world, and where we are headed. Bill is a terrific guy, you don't want to miss this.
June 17th Wasilla seminar On June 17th, the American Parkinson's Disease Association, Washington State Chapter will bring a Parkinson's Disease Patient Care Educational Program to Wasilla. The presentation will take place at Evangelos, 2530 East Parks Highway from 11:00-2:00 p.m. There will be two speakers. First we'll hear Dr. Steve Setter on "Your PD medications, 10 things you should know and do in 2010!" second, Dr. Kris Rhoads, a neuro-psychologist, will speak on "Neuropsychological changes in Parkinson's Disease: Cognition, Affect and Sexuality". This event is free and comes with lunch included. Registration is required, and can be done by phone at 425-443-8269, by email evedavis@gmail.com, or via the Website, once there, click on "Educational programs".
June 19th Support group picnic. June 19t will be our annual picnic, more details to come.
Another month has stormed by like an express subway that doesn't stop at your station. That means it must be meeting time. We will have a guest speaker from the Alzheimer's organization here in town who will tell us about services that they can provide for anyone who has dementia, which of course includes a number of PD sufferers.
The Valiant BETTY BERRY has volunteered to come back with another concurrent session for care partners, so those of you who care for someone with Parkinson's will have a great opportunity to benefit from her experience and generosity. It all happens at the Swank and sophisticated ANCHORAGE PIONEER HOME this Saturday the 17th of April 3:30 p.m. on the Fifth floor in the West lounge, overlooking scenic Cook Inlet and vibrant downtown Anchorage.
Click on image to enlarge. You can view all THIRTEEN of the collected FULL COLOR, FAIRLY EXCITING adventures of FLASH MOLASSES, The Cement Superhero, over at Posterous
I think that I shall never see A disease as clever as PD. A disease which is so perverse, It forbids walking, except in reverse. Angry? Any curse you utter will be reduced to mumbled mutter. Your sense of balance goes askew It stinks, but sense of smell goes too. A disease so thorough and drastic Even the meds will leave you spastic. It's no surprise if you've depression, When your deterioration's called "progression" I'd mention dystonia and other ills But it's time to pause and take some pills. Poems are made by fools like me, but only God can cure PD.
Because you asked for it, and by you, I mean Steve Greenberg, here it is! All six of my hard-hitting, tear-jerking, no-holds-barred animations that blow the lid off the Parkinson's Disease affair. Not for the faint of heart. The truth isn't only out there, it's right here. If you can face it, press the button.
(Above: A pot-boiling panel from the classic "Flash puts on his Socks" episode.)
NOW, for the FIRST TIME ANYWHERE...all TWELVE PULSE-POUNDING EPISODES of THE FAIRLY EXCITING ADVENTURES of FLASH MOLASSES are collected in ONE PLACE!!! Thrill to the adventures of THE CEMENT SUPER-HERO as he boldly MAKES HIS OWN BREAKFAST, wrestles with a BLADDER GONE BAD and outwits his nemesis, Parkinson's Disease at every turn. With cameo appearances by PAM DUNLAP-SHOHL,JON SCOTT, and VIENNA the WONDER WIENER-DOG. Here's the link
A man on the ground holds a sign declaring that he has Parkinson's. Able-bodied men, who tower over him, angrily mock his disability, Why do these healthy people waste their energy on someone who can obviously do them no harm?
Because they fear him. They see in his stricken body what likely will be their own fate. Sooner or later we are all going to lose the vigor of the young and the steady vitality of middle age. We will be either ruined by advancing years and their inevitable companion disease, or snatched away by sickness or mishap before we are ready. No one gets out of here alive and few get out gracefully.
This man on the ground is a reminder of that. These bullies want no reminder of human frailty, because they share it. They believe that by mocking him they can show how separate they are from him, how strong. But what they are separating themselves from is their own humanity.
Many things distinguish us from the animals. From our capacity (and, as Mark Twain noted, our need) to blush, to our appreciation of music. But nothing comes close to what living together and taking care of each other does to soften the blows of our uncaring Universe and mark us as unique. As a species we excel at taking care of each other. We are so good at taking care of ourselves, we even have time to make other species lives better. Ask your dog.
It is in coming together, in backing up one another, that we find our real strength. Even the bullies agree. Go back and look at the video. It takes a crowd of healthy people to deal with one man cut down by Parkinson's Disease
Above: Parkie-with-a-purpose Doug Bahniuk plans to ride his bike from Anchorage to Fairbanks this summer
The problem that most of us who have Parkinson's disease share is an inability to initiate voluntary motion. That's where Doug Bahniuk, an Ohio engineer who was diagnosed with Pd over 5 years ago differs. Doug has such initiative where motion is concerned that he has crossed the State of Oregon three times by bicycle. Doug now plans to ride from Anchorage to Fairbanks, in spite of, and because of Parkinson's Disease.
Following is an email interview that Doug and I recently undertook, me with an earnest curiosity, Doug with a carefree insouciance.
Pete (earnestly) So Doug, tell us about your summer plans...
Doug (with Devil-may-care panache) My plan is to prove to the world and myself that Parkinson's Disease won't stop me from meeting life's challenges head on by riding my bike solo from Anchorage to Fairbanks. While I'm at it, maybe I'll tackle another life's goal -- to rule the world.
To do so, I'm going to first fly from Cleveland, Ohio to Anchorage. From Anchorage I'll ride my bicycle to Wasilla where I will confer with a certain world leader about my plan. From Wasilla, I'll ride to Willow Creek, gathering support along the way. By the time I reach McKinley, I expect a substantial following of hungry bears, if not people. I'll continue to McKinley Park, recruiting followers in the wilderness all along the way. By the time I get to Nenana, I'll be riding either a ground-swell of support, or still be on my bicycle. When I reach Fairbanks, crowds will welcome me as their new leader and sweep me into office, or under the rug. After that I'll ride a victory train back to Anchorage, basking in the glow from my minions. That's the plan, anyway, well at least the part about riding my bike. Pete Do you have much bike trekking experience?
Doug I've ridden across Oregon three times (Portland to the coast, down the coast, cross country to Crater Lake. From there to Boise Idaho.) After the third time I rode from Boise to Denver. Two years ago I rode from Denver to St. Louis, and flew from St. Louis to Cleveland (I rode from St Louis to Cleveland in 1975.) Then I rode from Cleveland to Boston. All the rides were solo.
Pete Why Alaska?
Doug Alaska is a beautiful state. The ride should be very challenging, because there's not much between Anchorage and Fairbanks. I'll have to be very self-sufficient. And how many people with Parkinson's have pulled this off? I'm the first that I know of.
PeteWhy solo?
Doug Well who's going to be crazy enough to go with me? Seriously, I enjoy riding by myself. I don't have to worry about anyone other than myself. I stop when and where I want and I ride at my own speed. And I enjoy my own company. I enjoy the freedom, being self-sufficient and the fact that people are impressed when I tell them I did it alone.
PeteWhat are your greatest concerns about the trip?
Doug Trucks and cars. I've been hit six times, with injuries ranging from bruises to a broken hip. I've been blown off my bike by truckers seeing how close they can get. Yes, I worry about the wildlife. I mean, a woman just got killed by wolves in Alaska, so who wouldn't worry? And you always hear stories about bears attacking campers. But it's the vehicles that pose the greatest danger.
PeteHow long have you been diagnosed with PD?
Doug Somewhere between five and seven years. I purposely try to forget how long. Long enough to have real problems with coordination, stiffness, balance, and trembling. But I can deal with these things. They just make the ride interesting.
PeteWhat have you learned about PD and exercise? When I ride, I feel free. I feel normal. I have fun. I can keep up with most guys my age (57) that don't have PD. I'm not sure there is a long term benefit of riding or not, but while I'm riding, I feel good. And that's good enough for me.
You can find out more about Doug, his plans, and how you can support Doug and his quest to inspire patients with Parkinson’s Disease and raise money for research by going to Doug's blog
