17 Year Search for Credible Hope

My latest blog post for the Northwest Parkinson's Foundation is about credible hope. You can find it here or at least, I hope you can!

"My Degeneration" My book About Coping With Parkinson's Disease is Now Available

My advance copy of "My Degeneration"

Finally, after what seems like, and actually was years in the making, The Penn State University Press has released my "graphic narrative" of what it's like to be forced to deal with Young-Onset Parkinson's Disease. What's more, you can order it at a sale price right now. I hope that this book will be a comfort and inspiration to my fellow people with Parkinson's. And I hope it will be a provocation to consider how best to respond to this indefatigable disease that affects all parts of life as well.

So please read it and let me know what you think. Otherwise I'll be forced to rely on the words of people like Bill Bell, co-founder of the Northwest Parkinson’s Foundation, who was kind enough to write “Peter Dunlap-Shohl once again brings his unique art to the table to help educate, illustrate, and demonstrate life, hope, and strength on his journey with Parkinson’s. Creative and insightful, this book reflects all of Pete’s greatest qualities, including his constant work to help and educate all those in the PD community, patients and care partners alike.” Or Tom Kizzia, Author of the riveting "Pilgrim's Wilderness" who had this to say “The world made fresh by a Parkinson’s patient with a wonderfully sensitive and cocked eye. He tells the tale of his fast-changing reality with compassion and wicked humor, leaping from one crazily inventive work of art to the next. Never more acute than when examining his own mind-set, Peter Dunlap-Shohl leads us from diagnosis and despair to the high ground where he could compose this lucid, moving book. A miracle, in a way—and a triumph.” Heck, you could read this book for the blurbs alone!

As far as I can tell, this is the only book of its kind on Parkinson's available in the known universe. Here is a sample page from the second chapter "Learning to speak Parkinson's "

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

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

UPDATE:

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

Your dubious oracle,

Peter

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

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

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

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

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Parkinson's Forecast for December in Anchorage

It's time for us to drive dull care way with festive events and high caloric intake. In order to do our part we will be having our Holiday Potluck for our December meeting. What this means to you: unless you want to feel like a slacker, you will show up at the regular meeting time of 3:30 with something delicious to share with your fellow support group members. We will stave off the cold and dark of the season with the bright light of fellowship. I'll bring something main-dishesque. You bring whatever you think the rest of us would benefit from eating. This happens at the Pioneer Home on the 15th of December.

The Telehealth conference will be the 12th of December at 1:00 p.m.  The speakers: Dr. Carlson, a neurosurgeon and Jamie Mark ARNP on "Is Deep Brain Stimulation an Option?". Telehealth interactive seminars take place at Providence hospital in their oncology building off Piper St. Go to the second floor walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your right. Hoping to see you at one or both of these events!

Pete out.

Scalpel... sponge... white out...

Here is the kind of thing I am delighted to have lived long enough to say, the sort of thing that would have read as nonsense a few short years ago. Frankly, it still looks a little weird when I type it. But here it is: Last Friday, during brain surgery to provide relief from Parkinson's Disease, cartoonist Richard Thompson drew a picture of his brain. (You may see his drawing by going here, and scrolling down.) Naturally, you have many questions about this. As a cartoonist who has undergone this same procedure, I'm here to help. First question?

Q: My God! He drew this WHILE the team had his skull open and his brain exposed????
A: Correct. When the doctors are trying to find the ideal placement of the electrodes in the brain, it is necessary to see how the patient responds to the electric stimulation from the wire, and where the wire is in the brain. Different electrode locations, varying by millimeters, can produce markedly different outcomes. Based in part on the real-time reactions of the patient, they will tweak it to the optimum possible.  So, for this phase of the operation they wake the patient up to assess how they are doing. Richard and his doctors were probably trying out a placement or setting to see how well it worked for drawing. What better way to do this than by actually drawing?
Q: Wait, doctors were putting electrodes in his brain?
A: Yes. The operation is called Deep Brain Stimulation (DBS). For reasons that are poorly understood, many symptoms of Parkinson's Disease can be fairly well controlled in some patients by "stimulation"- zapping certain regions of the brain constantly with mild electric shocks.
Q: Ouch! Doesn't that hurt?
A: No. While the scalp area is plenty sensitive, the brain has no nerves within it that detect pain. Pain is your body's way of telling you that you have a problem that needs addressing. It's like the robot in the old TV show exclaiming "Danger, Will Robinson!" Unfortunately, if something dangerous has made it through your skin, your skull, and past the Blood-brain barrier, you are most likely FUBAR, and pain is useless. So the brain does without it.
Q: Cartoonists have brains?
A: Security, eject that man.
Q: So why did Richard draw a brain?
A: Likely because brains, in all their squiggly moistness, are fun to draw.
Q: This is amazing, and sort of cool.
A: No kidding!
Q: Does this mean that Richard will be able to produce his wonderful loose and confidently masterful drawings and paintings again?
A: I believe so, but it depends to some degree on his tolerance for frustration. The apparatus installed by the doctors must be adjusted to Richard's particular case. His anatomy, the progression of the disease and the way it manifests itself must all be taken into account as the device is tweaked.  This can take months of trial and error, during which symptom control will likely be less dependable than it will eventually become. Fortunately for Richard, he lives near Washington DC, and there are many highly-trained  medical professionals around. But with countless possible settings. finding the perfect mix will take time.

And DBS is not a cure. Parkinson's will always lurk in the background, subdued, but not banished. From time to time it will leap out from the weeds and send his stroke askew. This can be dreadfully demoralizing, especially for a perfectionist like Richard. It can mean doing things again and again to capture the look you want. 

Creativity is all about overcoming limits. Parkinson's is all about imposing limits. My money is on Richard's creativity. I can't wait to see what comes next.

Coming Soon to Anchorage, Deep Brain Stimulation Symposium

Medtronic and Swedish Hospital are teaming up to do a blockbuster presentation on Deep Brain Stimulation a surgical procedure that can have significantly beneficial results for people with Parkinson's Disease as well as other brain maladies, including essential tremor and depression. The presentation will be called Diagnosis, Management and Surgical Therapies for Essential Tremor, Parkinson's Disease and Dystonia. Speakers will include

•Jennifer Witt, MD Medical Director, Division of Movement Disorders, Swedish Neuroscience Specialists

•Peter Nora, MD Medical Director, DBS Program, Swedish Neuroscience Specialists

•Peggy O'Neil Shortt, ARNP DBS Program Manager, Swedish Neuroscience Specialists
The event is to take place Thursday, May 17, 2012, 11:00 a.m. – 2:00 p.m. Registration opens at 10:30 a.m.
It will be held at
Anchorage Senior Center
1300 East 19th Avenue
Anchorage, Alaska 99501

*Pre-registration is required for this FREE event. Lunch is provided.

To register, please contact Keely Dailey:
425-213-2147 or keely.dailey@medtronic.com
Bring your best DBS questions. These people have been at this for some time now, and should have answers.

High Country: Whacked on Anesthesia, DBS Patient Has Visions

Yes folks, it's another panel from the yet-unfinished-or-sold-blockbuster-graphic-memoir. In this thrilling episode, our protagonist has visions. But visions of what?... or should that be whom? Find out when you read the entire thrilling narrative of one man's adventures with Parkinson's Disease. Not sold in stores, or anywhere else. Yet.

UB the Brain Surgeon

As both an animator and a Deep Brain Stimulation surgery patient, my hat and bits of my scalp are off to Edheads for this interactive demonstration of how DBS is done.

This is not for the squeamish, but if you're not bothered by a little virtual blood you can pick up a virtual scalpel and scalp a virtual lawyer. Along the way, you'll get asked questions, "handle" high-tech equipment, and gain a better understanding of both DBS and why you weren't cut out for medical school. I was so enthralled I almost missed my scheduled meds.

This particular version of the operation is broken into different stages where parts of the operation are separated by days. Some doctors do all phases in one long operation, and correct me if I'm wrong, but I believe Dr. Philip Starr of UCSF has now managed to perform the operation without the necessity of waking the patient to check placement. But this is still pretty state of the art, and if you don't come away with a better general understanding of DBS, your tuition to medical school will be cheerfully refunded.