Moving Forward

Post written by Drs. Hiner, Hung and Blindauer

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This post is meant to accompany a slideshow created by John Chaplock. You may view it here:

http://picasaweb.google.com/johnius43/091011MovingForwardDavisPhinneyFoundationParkinsonSRide#

George made it! After six hours on the frigid road, 54-year-old George McCullough peddled the last mile of his 62-mile journey in the Moving Forward: Ride/Walk for Parkinson’s. You may remember meeting George as a Parkinson’s patient featured on Today’s TMJ4 News on Thursday, Oct. 8.

George McCullough made it!

Waiting in the street the entire six hours to proudly cheer him on were George’s wife, four kids, two aunts, other family members, numerous friends, Davis Phinney and the whole Moving Forward Parkinson’s tribe.

It was downright cold, in fact below freezing, at 7:30 am when George headed out behind Davis Phinney’s wife, Connie Carpenter, former Olympic cyclist, and their son, Taylor Phinney, and about 50 other serious cyclists. Taylor showed his national champion form when he finished the ride in under three hours. His toes were freezing!

At 9:00 am another 50 cyclists headed out to ride 28 miles behind our own Chris Sheridan and the executive director of the Davis Phinney Foundation, Amy Howard. At 10:00 am, another 50 headed out behind Olympic cyclist Davis Phinney to ride 14 miles. Al, a soccer referee with Parkinson’s, rode his three-wheeled low rider while George and daughter Cherie rode a tandem bike. Our many volunteers cheered them onward, some dressed as witches, monkeys and very bundled-up cheerleaders! There were many sights to see including a dog in a Moving Forward volunteer T-shirt and a man (Peter Sparrow) with a very unusual beanie talking to a cheetah, AKA our very own Vicki Conte!

At 11:00 am, more than 150 people set out on the two-mile walk. People with Parkinson’s disease, some in wheelchairs, as well as spouses, kids, grandkids, friends and neighbors all showed they could “walk the walk.” Even a Paul McCartney look-alike walked. Little by little folks returned from their various cycling and walking routes to eat brats and hot dogs, drink beer, and listen to The Blifftones rock our tent! We congratulated each other and thanked the 120 volunteers who made it all happen by cooking, serving, driving the route, and guiding riders on the route as sentries for hours and hours. And we waited for George.

Prizes were awarded to our top fund raisers – Maureen Gile and Bill & Lynn Ihlenfeld. So far we have raised over $30,000 and we’re still counting! All of the proceeds from the benefit ride will be split evenly between the Davis Phinney Foundation and the Parkinson’s and Movement Disorders Program at Froedtert & The Medical College of Wisconsin. Davis Phinney, world class cyclist, world class human being, and person with Parkinson’s, shared words of encouragement and solidarity with the Parkinson’s tribe. He had a similar message the day before at his Victory Summit. The encouragement to find small victories every day and savor them was embraced on this brisk October day. And then something more than a small victory occurred …

George made it! Despite eight years of living with Parkinson’s, despite his 40-year old Schwinn bike, with cheeks red, his nose wet, and to the cheers of his loved ones, George finished the challenging 62 mile course. Maybe, together with his family, doing something is better than doing nothing. George McCullough certainly did something on Sunday, Oct. 11, 2009. We all experienced the victory.

Post written by Dr. Bradley Hiner

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The Davis Phinney Foundation is bringing their Victory Summit to the Milwaukee area on Saturday, Oct. 10. They have closed registration — having reserved spots for 550 people! They will videotape the event and make it available for no charge through their website www.davisphinneyfoundation.org.

The fact that 550 people are coming out for this, tells me something. It tells me that people with Parkinson’s are anxious to learn about ways they can deal with the disease through exercise. That’s the mission of the Davis Phinney Foundation — to teach people with Parkinson’s about the value of exercise and let them experience small victories every day by actually implementing their exercise program.

The day after the Summit, we will be giving folks a chance to actually act on this message. We are putting on Moving Forward: Ride/Walk for Parkinson’s on Sunday, Oct. 11 at the beachfront of Pewaukee Lake. You can still register to ride or walk on at www.davisphinneyfoundation.org. I’m riding. So is Dr. Hung. Dr. Blindauer is walking. Most of our Parkinson’s and Movement Disorders team is participating in some way. Many of our colleagues in Neurology and throughout Froedtert & The Medical College of Wisconsin are either riding, walking, volunteering or donating. You can even register the morning of the event.

I am most impressed by our patients that are riding, walking, volunteering and donating. George, a young onset patient, has gotten his company to donate all the post-ride food and his wife and kids and friends are cooking it and serving it. George has been training to ride the 100K. That’s farther than I am going to attempt!

Bill has raised $2,000 in sponsors and almost $4,000 in donations. His wife has put together all the registration volunteers. Bill has been training to do the 14 mile route around the lake.

Maureen is treating the event like a family reunion. She has riders, walkers, volunteers and donors from a four-state area. Maureen and her kids will walk the two miles; but I won’t be surprised to see her riding in the future. She is the front-runner for winning the top fund-raiser’s prize of a custom fit Road Bike donated by Transition Cycle and Training.

There are many, many more patients and families that are getting behind this event. Some are coming to see “the first family of cycling:” Davis Phinney and his wife Connie Carpenter — both Olympic Medalists — and their son, Taylor Phinney, cycling phenomenon. But most are coming because they believe exercise is an important component to a healthy, happy life. And yes, a person with Parkinson’s can have a healthy, happy life. I meet them every day in the clinic and I will be seeing hundreds of them this weekend. I hope you can join us.

Post written by Dr. Karen Blindauer

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This isn’t the first time I’ve blogged about exercise, and it won’t be the last. The human body is meant to exercise — it keeps our muscles, including our heart, strong and it releases the chemicals our brains need to be happy and healthy.

As a career athlete, Davis Phinney has experienced the benefits of exercise for his entire life. As an elite and decorated American cyclist, including winner of an Olympic medal and a number of legs of the Tour de France, Mr. Phinney has experienced the joy of victory many times. Today, as a person with Parkinson’s, Davis Phinney spends his time encouraging other people with Parkinson’s to exercise and to find their own victories every day. “It’s not the size of the victory, but the recognition of it that counts. The motivation behind it. The inspiration it can provide to others. In the end, it’s about what we can do today to improve lives. And that is a victory in itself, “ he tells us.

There have been numerous studies showing that people with Parkinson’s disease who exercise have a better quality of life as well as better walking, balance, strength and flexibility than those who do not exercise. The Davis Phinney Foundation recently conducted an online survey with 100 respondents. It’s a “snapshot” of the folks who were checking his Web site and willing to do that survey; therefore it can’t be generalized to the entire PD population. The survey does, however, illustrate the gap between the importance that people with PD place on exercise and the information provided by their neurologists. The findings show that while 81 percent of people with PD said they believed that exercise can slow disease progression, only 40 percent reported discussing exercise with their physician within six months of diagnosis. Almost 20 percent of people said they never discussed exercise with their physician. Other studies have even less impressive results. One indicates that only 5.6 per cent of survey respondents received information about exercise from their physicians.

Let me be among the group of physicians who informs, promotes, encourages and even prescribes exercise as a treatment modality for Parkinson’s. Where appropriate, step one can be a prescription for a therapy evaluation that can lead to a course of physical, occupational and speech therapy. Those therapy sessions will only be of long term benefit if you have an exercise program in place for health maintenance following therapy. For those folks who really don’t require formal therapy, we need to identify and commit to an exercise program. Some people benefit from and enjoy group classes. Others who are motivated and disciplined may come up with a very good regimen that they stick to on their own.

Some people may be discouraged that they can’t do a half hour or hour of exercise at a time or can’t walk a mile from the get go. Getting in shape takes time. Doing a little bit of exercise and building endurance gradually is much better than not exercising at all. Exercise does not have to cost money either. You can walk in your neighborhood or walk at the mall when the weather is bad. You can watch and participate in exercise programs on TV like Sit and Be Fit. You don’t need to buy expensive equipment. You can use a soup can as a light dumbbell, or use a purse for a heavier weight to lift. (Be careful not to overdo it with this one. I’ve seen some big and heavy purses in my clinic.)

Many of my patients ask me which exercise is best for PD. The most honest answer is that we don’t really know for sure. My personal opinion is that someone should pick an exercise or physical activity that they enjoy so it is easier to stick to.

We are fortunate in the Greater Milwaukee Area to have numerous exercise classes specifically geared to people with Parkinson’s. Among the best is the exercise class developed by physical therapist, Teresa Steffen, PhD and replicated in 7 locations. There is also an excellent yoga class for Parkinson’s at the Milwaukee Yoga Center and the Moving and Grooving Parkinson’s Dance/Exercise classes in four locations. Contact Vicki Conte our Program Coordinator at 414-805-8326 for more details.

If you are looking for some great information and inspiration on Parkinson’s and exercise, please sign up to attend the Oct. 10 Victory Summit sponsored by the Davis Phinney Foundation in collaboration with Froedtert & The Medical College of Wisconsin. The event, held from 9:00 am to 3:00 pm, is free of charge including lunch with national speakers including Mr. Phinney. If you are looking for an opportunity to spend time exercising outdoors with me, my colleagues, family and friends and Davis Phinney, please register for Moving Forward: Ride/Walk for Parkinson’s on Oct. 11. Information on both events can be found at www.davisphinneyfoundation.org. We wouldn’t normally do events two days in a row but we wanted to take advantage of the opportunity to experience some “daily victories” with a great Parkinson’s role model.

Post written by Dr. Bradley Hiner

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Some of you may have heard of this: there is a high-tech, “personal genetics” company called "23andMe" in California that wants you to spit in a cup, send it to them and for a fee will run a series of genetic tests on your DNA (we all have 23 chromosomes, hence the name). It is being pitched as “helping to advance the cause of science”, and is being sponsored by the Michael J. Fox Foundation no less to “help find the cure for Parkinson’s”.

My opinion? Let’s slow down and take a look at a few details:

1. Bear in mind that this is a privately held company that will now have possession of your DNA, and can do whatever research in the future they want to. It can be stored in perpetuity, and used for whatever purposes they want.
   
   
2. One of the co-founders of the company is the wife of Google co-founder Sergey Brin. Google is an investor in the company. Google may be many things (like a great search engine) but do you want them owning your DNA?
   
   
3. A few basics about genetic testing in Parkinson’s:
   
   
   1. While there have been genes discovered that are associated with PD, the fact is that the vast majority of patients do not inherit it nor do most cases “run in families.”
      
      
   2. The known genes that may cause PD are quite rare, and even in those cases, there may be a difference in gene expression, something known as variable penetrance and expressivity. That means even if you are one of those rare individuals who have the gene, there’s no way of knowing if or how it will be expressed.
      
      
4. So you spit in the cup, pay your money, and wait patiently by the mailbox. In the mail some time later you receive an official print-out of your genetic profile. Let’s say you are positive for one of the genes known to cause PD (for example, LRKK2). Now what? Is there anything you can do about it? Is it going to change your treatment? Are you now going to disclose this information to your family, so they can worry about inheriting it? How far along the family tree will you have to alert people? How is this information going to affect your children, and their children? Will the grandchildren need to be worried about it?
   
   
5. The fact is, until we have a treatment that is “neuroprotective,” i.e., can prevent Parkinson’s disease and its progression, there is little to no value for you, the patient/consumer to have this kind of information. Maybe someday, but not now.
   
   
6. Finally, the test will be scanning your genes for many things, not just those related to PD. What are you going to do if you get unanticipated results, or results that you or your primary care doctor are not equipped to interpret?
   

The company promoting this testing themselves admit the following:

"The decision to learn about your genome, however, is a significant one deserving of serious thought. Currently there is no targeted therapeutic response to learning that you have a specific genetic variant linked to Parkinson's, and such treatments require additional research. You may also discover other unexpected health information unrelated to your PD status. While we think you should take this decision seriously, we also believe that the choice to discover this information is yours to make."

In patients with Huntington’s Disease (unrelated to Parkinson’s), we have a very specific genetic test that can predict with certainty whether or not you will get the disease. This information may be important from the standpoint of family planning, for instance. But very strict guidelines have been set up such that this information is handled very carefully, so that if the test is positive the patient and family are not left on their own to deal with it. Imagine getting test results in the mail and trying to come to grips with it while standing at the end of the driveway in front of the mailbox.

My opinion? Over-the-counter genetic testing is a bad idea. Genetic testing will almost certainly have a greater and greater impact on medical care in the future. We are hearing phrases like “personalized medicine” in this regard. Already tests like those for certain types of breast cancer (“BRCA1”) or Huntington’s disease have substantially affected decision-making for individual patients and their families. But these circumstances involve professionals like medical geneticists and other skilled health-care providers who can take that information, interpret it and help the patient make informed decisions and deal appropriately with it.

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The following is feedback received for this blog: Hi Bradley, I have found the exact opposite to be true with respect to my 23andme experience. I am treated at Froedtert Hospital for Dysautonomia and Orthostatic Hypotension. Through my genetic testing I have been able to see a list of medications and my possible response to them based on my genetics. This is helpful when you are chemically sensistive. 23andme also has an option to keep your DNA completely private and not used for any type of research if you so desire. I am hopeful that through this process a common genetic link of some type may be found in common with others who have the same diagnoses as I do and eventually new clinical trails or treatments may be developed to help perhaps not myself, but others who are diagnosed in the future. - Liza W.