Assistance Dogs, For When Mere Obedience is Not Enough

Dogs made the spectacularly successful decision to partner up with humans so long ago we have only myths and legends to describe the origins of this ancient bond. They now live with us in every region of the globe. Some earn their way through hard and dangerous work, sniffing out bombs or guarding livestock. Others win our affection through their sheer charisma, and are awarded lifetime benefits including lodging, board and a decent medical package.

They depend on us, and are great students of the human race, exquisitely attuned and responsive to the small and unconscious signals that we send. In some ways they know us better than we know ourselves. It's a survival skill that works both to their advantage, and to ours.

The phenomenal canine ability to read humans has opened the way for a new role for dogs as service animals for people with disabilities. This afternoon I got to watch a magnificent coppery-coated Golden Retriever named Stan (above) show what he could do. Drop your pencil? Stan will pick it up and put it in your hand. TV remote out of reach? Stan is all over that. He'll find it and deliver it to where you sit. Your change fell in the snow? Stan can recover it, and will drop it in a bucket for you. Dogs are used to assist everyone from MS patients to victims of Post Traumatic Stress Disorder, whom they will awaken from a nightmare. All of which is impressive, but we ask of them even more demanding behavior. We ask them to use their judgement to challenge us when we are headed for trouble.
 
These dogs are reared for "intelligent disobedience" They know us so well that they will resist and even obstruct us when we are unaware of imminent harm. According to the trainers from Alaska Assistance Dogs, canines can tell when a diabetic is experiencing dangerous levels of sugar in the bloodstream and will insist that their charge pay attention to the problem. A friend in Kenai who suffers from Parkinson's told me that her assistance dog can sense when she has a fall coming and will do its best to dissuade her from walking. She reports that when she doesn't pay heed she soon regrets it when down she goes.

This of course requires the human involved to pay attention, evaluate the situation, and decide whether the dog has a point. Then admit that Fido is right and that they are wrong. Ouch.

Are dogs really that smart? Smarter at times than humans? Let me answer that question with a question. When was the last time when Timmy had to save Lassie from falling down a well?

Doing My Bit For Parkinon's Disease Awareness Month

Parkinson's and creativity: What Choice do You Have?

Not long ago there was a burst of items on the Web reporting a link between the start of dopamine therapy for Parkinon's Disease and a flowering of creative energy. This interested me because of the "creative roll" that I have been on since my diagnosis ten years ago.

As this streak continued to unfold I began to wonder if it was an artifact of the treatment. If so, was the treatment merely bringing me up to my baseline creativity, or was I being "artificially enhanced", like a ballplayer hopped up on steroids? I worried and wondered for awhile, and then it hit me: What difference does it make? What is important is what you can and do accomplish. The other stuff just isn't measurable.

Parkinson's is at work in our bodies long before the first tremor betrays its presence. When that first tremor does show, it means that 70-80% of the dopamine-brewing cells in your substantia nigra are no longer in the dopamine manufacturing biz. The fact that one can skate so long with such impairment is truly amazing, and I have grown to find it comforting. But again I pondered, what had Parkinson's stolen from me before we caught it red-handed? It is the inverse of the first question, and just as useless to worry over.

Parkinson's Disease itself is fiendishly creative. It reshapes personalities, habits and even physical characteristics. It demands a creative response. One has to rethink how life can be approached, from the simple act of walking to the complexity of spousal relationships. And because Parkinson's Disease is always on the move, we must stay on the alert for new ways to cope as old strategies lose their efficacy. As our capabilities diminish, we must incorporate new ideas of who we are into our notions of ourselves.

This is a form of creativity that can't be measured in the number of drawings executed or the number of sonnets written. It is the process of building meaning from the pile of jackstraws that we become following the diagnosis of PD.  It entails loss and bereavement. It's hard to accept. But to go on, you have to re-imagine yourself in ways you never would have without the challenge of this disease. This is the creativity demanded of all of us who have Parkinson's Disease. So far, it remains unmeasured.

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.

Dr. Alec Glass, PD Specialist to Continue Serving Alaskans in New Solo Practice

Our visiting Parkinson's specialist Dr Alec Glass has parted ways with the neurology practice he was affiliated with here in Anchorage (Alaska Neurology Center). Dr. Glass plans to continue serving Alaska patients, and as of now is setting up his own office here. If you are a patient of Dr. Glass, and wish to continue seeing him here in town, you may reach him by phone at 1- 800-764-7690 . He anticipates being available for patients by mid-late April.

Signing Off the Radio Show

(Above, the talented and reflective Fred Newman, sound effects wizard for "A Prairie Home Companion"  made my final edition of "Hometown Anchorage" a pleasure to do)

Today I did my final "Hometown Alaska" broadcast. The show will go on, there are three other hosts to continue the weekly schedule, and I assume they will replace me with a fourth.

This was my decision, and it was a tough one. The folks at KSKA were supportive and dedicated to high-quality journalism. I also got good feedback from  people I ran into around town. So given all that, why am I bailing?

Live radio, when done right looks easy enough. Doing it right however is not simple. You must be aware of the time, the callers on your first screen, the emailers on your second screen, meanwhile absorbing what your guest has to say and preparing your next question. Not to mention cuing and taking cues from the engineer. At the same time you want to avoid silence or "dead air". You also must  avoid live air that involves any of George Carlin's seven words that are forbidden to broadcasters. All this is a mighty load of multitasking for a person whose ability to concentrate on more than one thing, and whose ability to even speak, has been significantly eroded by Parkinson's Disease.

There were off-air considerations as well. Rounding up guests was touch and go. Trying to give the person reasonable time to call back while sweating the possibility of having to put together something on quick turn around as an alternative was a fingernail biting exercise for me.

Was it ever fun? Are you kidding? How great is it to be able to sit and chat with NPR's BJ Liederman or Alaska  novelist Andromeda Romano-Lax? It's stimulating and exciting. Which made the various mistakes and technical errors that much more painful. In the end, I was not improving fast enough to meet my own standard of what I would like to hear on the radio. The staff and the listeners deserve someone who is fired up and grateful for a tremendous opportunity. I am certainly grateful, but more toasted than fired up.

 So is this a victory for Parkinson's Disease? Has it stolen something from me again? You can be the judge of that. But I will call it a draw, or maybe a tactical retreat. A victory for PD would have been to never try, to allow the disease to foreclose options without really testing to see whether they were viable or not. Instead I got  to learn a few new things. One of which is I'm not cut out to host Hometown. I plan to advance on other fronts.

Thanks to Pat Yack, Kristin Spack, Bede Trantina and the other terrific folks at Anchoragepublic.org who all did their best to make a broadcaster out of me.  They came pretty close, which, given what they were working with, is commendable. The final show, with the terrific Fred Newman is now posted here. It was nice to go out on a high note. Fred? (TWEWEEEEENNNGGGG!)

Studies and PD: If A Parkie Falls in a Forest...

Viartis, that often-gloomy-but-sensible oracle of Parkinson's Disease knowledge on the Web, recently published this takedown of Tai Chi as especially beneficial to people with Parkinson's Disease:

"A clinical trial assessed the effect of Tai Chi on postural control in Parkinson's Disease. Tai Chi is a traditional Chinese martial art and form of exercise. Participants took part in 60-minute exercise sessions twice weekly for 24 weeks. Although the researchers claimed that Tai Chi performed consistently better than other methods, the improvement was only 5% better than resistance training, and 12% better than stretching exercises. The Tai Chi group performed better than the stretching group in all secondary outcomes and outperformed the resistance-training group in stride length and functional reach. Tai Chi lowered the incidence of falls when compared with stretching exercises but not when compared with resistance training.

Out of the previous studies in the medical literature concerning Tai Chi and Parkinson's Disease, four were either non-randomised or uncontrolled clinical trials. Two failed to show any effect. Only one study showed Tai Chi to be superior to conventional exercise for Parkinson's Disease. So the evidence is insufficient to suggest that Tai Chi is effective in Parkinson's Disease."  
So, should we just go back to falling with no hope of improving our balance, but smugly aware that we're at least not wasting our time on mumbo-jumbo? Well just hold on a second partner, there may be more here than meets the eye. "Tai Chi performed better than stretching but not better than resistance training." But what if resistance training also helps us avoid falling?  I haven't been able to find anything specific saying it does  or doesn't. But There has been a flurry of articles on how terrific weight training is for people with PD. Perhaps both improve balance. In which case Tai Chi  might be "better" than resistance training, but certainly not worse. And way better than nothing.

Once again we are left wandering in a forest of studies trying to sort our way through a variety of unknowns and extraneous factors. How well-designed were the studies? How comparable were their sample groups? Scientists, like the rest of us , are human, all too human. Frustrated yet? I am. But as sure as the sun appears to rise in the East, one thing seems to be trending clearly. Exercise is emerging as a powerful coping tool for those that have Parkinson's Disease. Tai Chi, dance, Yoga, walking, weightlifting, bicycling.... surely one of these forms of exercise appeals to you enough to get your commitment.  What if the benefit is marginal? If the margin is where I can make some headway against PD, the margin is where I will do it.

Alaska MS Center to sponsor "Disability Facts and Fun Fair"

Hello Friends, The Alaska Multiple Sclerosis Center is hosting a Disability Facts and Fun Fair on Sat. April 28, 2012. The event is at Providence Hospital Cancer Center in Tower U, rooms 2281 and 2285. It will run from 12:00-4:30. I don't know much about the exhibits but we should be able to find out more when we are visited at our regular meeting by Antonia Fiflis-Fowler, the executive director of the Alaska MS Center. That's at 3:30 at the Pioneer Home.  See you there.

March Parkinson's Forecast

Hello friends,
Here is the monthly update: The telehealth Seminar will be broadcast Live  at 1:00 Monday March 12, This thrilling episode is on dance and exercise. The event occurs  in the Providence oncology wing on Piper St.  Go to the second floor, walk down the lonnnnnnnng hall that stretches South from the cafe and look for room 2401 pretty much at the end of the hall on your
right. Right after that on March 17,  (yes, St. Pats)  We will have our regular meeting. Our guest will be Antonia Fifles-Fowler of the Alaska MS center who will talk about what services and benefits that they offer that might be of interest to those of us with PD. I know I'll be there, hope you can make it.

Best,

Peter

Letter to an Old Friend With A Husband Newly Diagnosed With Parkinson's Disease

Hi Anni, Very sorry to hear of your husband's diagnosis. Parkinson's is terribly complex, and in spite of years of study, still not well understood. For that reason I don't have faith in one thing as the "silver bullet" to take this problem down. Not coconut milk nor Coq10. PD needs to be addressed holistically, with medicine exercise, therapy, diet, and stress reduction. The good news is that given a few breaks and some discipline, a person with PD can have excellent quality of life for decades.

As far as the idea that one food or supplement is somehow the missing link to good health, I have seen no evidence. As noted above PD is a complex problem that involves the interplay of genetics and environment, and even personal habits. For instance, the rate of Parkinson's Disease goes down where the rate of tobacco consumption goes up. The same is true of coffee. Given the documented health risks of tobacco, I haven't taken up smoking or chewing, but I do drink coffee with pleasure. However it's good to remember that there is not a proven causal link here, merely a shown correlation, Perhaps a side effect of PD is a low tolerance for lattes and cigars, hence the association.

 But as long as we are talking about correlations between Parkinson's and what we put in our bodies, I can identify two factors to consider that seem to have consensus among those who have studied this. The first is that PD has clearly been linked to pesticide exposure. So it makes sense to me to limit further contact with these poisons. (as my cousin the internist says "When you have a bruise you don't continue to hit the same spot over and over.") Hence, try to eat organic as much as possible. Second, the great Dave Heydrick, a neurologist who has PD, looked at all the studies etc. that he could find about nutrition and Parkinson's and found that the best way to eat for PD is to follow the Mediterranean diet. Not much red meat, get protein from fish, and big-time consumption of vegetables. Even if this were not good for PD it's sensible for your underlying health.

 Beyond diet, there is much that you can do to combat the progression of symptoms. Exercise in many forms is an exploding area of progress in the struggle of the individual against this disease. Everything from dance to bicycling to yoga seems to have its scientific adherants. This suggests to me that a variety of exercise makes sense, and I can testify that it certainly makes me feel better. And again even if it had no effect directly on PD, it is the sort of practice that will bolster one's underlying health, thus enabling one to cope more effectively with the disease. Also, exercise is a proven mood elevator. The benefits of that are obvious. 10 years into my diagnosis I still ski cross country, bicycle and hike.

There are exciting developmens in physical therapy happening as well. Two I will mention, the Lee Silverman speech therapy and the related Lee Silverman Big motion therapy have both been shown to make marked improvement in the areas of speech and movement. I can testify first hand to the efficacy of the voice program which can do wonders to restore speaking ability. I have heard good things from a friend who has done the movement training.

Last, stress is known to exacerbate the symptoms of Parkinson's Disease and may speed progression. Many of the already mentioned practices will help with this, but I would also add the practice of attending a support group. In adition to providing an atmosphere where one doesn't feel compelled to minimize or hide symptoms, a support group is a place where one can pick up tricks and current knowledge. There is more hope than ever of finding ways to work around Parkinson's Disease. If you guys can stay on top of the things that matter, the best is yet to come.