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.
Tuesday, December 7, 2010
Southcentral Alaska Parkinson's Forecast for December
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.
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.
Tuesday, November 23, 2010
Sunday, November 14, 2010
Video: Pete more or less alive at the 2010 Hope Conference
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.
Wednesday, November 3, 2010
Homemade Hope: Living Well Now with Parkinson's Disease
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:
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.
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”.
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.
Thursday, October 21, 2010
Pete's Parkinson's portraits: Margaret Bourke-White
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.
Monday, September 27, 2010
Hoof and Mouth: Scientists Find Talking While Walking Can Lead to Falls for People With 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.
Thursday, September 23, 2010
October in Parkinson's: What's Brewing
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.
Thanks,
Peter
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.
Thanks,
Peter
Tuesday, September 14, 2010
Teleheath Conference: That's Entertainment!
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.
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.
Monday, September 13, 2010
As if you were not already busy enough...
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
Must run now, or at least shuffle,
Peter
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
Must run now, or at least shuffle,
Peter
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