Post written by Dr. Katie Spangler
Usually I just have one patient and a couple of family members at any one time in the clinic. I don’t think I’ve been with 402 people with Parkinson's disease and their families all at once! I found myself in that situation on Saturday, Sept. 25, at the Country Springs Conference Center ... and it was awesome! Here are some of the things I found most interesting:Eric Ahlskog, PhD, MD
, who was our keynote speaker from Mayo Clinic, is kind and patient beyond belief. After his presentation and Q & A, he spent another hour over lunch surrounded by people with Parkinson's disease answering questions. He really needed to hit the restroom and head to the airport, but he waited until every last person was satisfied. As a newly practicing Movement Disorders neurologist, this was a great example of a seasoned physician still interested in his work and the people he serves.Harvey Padek,
who teaches and markets the Living Well Program throughout southeast Wisconsin IS A VOLUNTEER! Harvey went through the Living Well Program when he was struggling with his post-polio syndrome, and it changed his life. Harvey gives countless hours of his time leading the program and talking to groups about it. We are now offering Living Well with Chronic Conditions, a free program, here at Froedtert & The Medical College of Wisconsin and our patients are reacting in much the same way — it is changing their lives. Self-management is the standard of care for chronic conditions — whatever the condition — and learning to deal with the pain, fatigue, difficult emotions, etc., that come along with these conditions makes all the difference in quality of life. Call 1-800-272-3666 and ask for information on the Living Well Program.
We had an amazingly tasty, healthy lunch and it was all planned by our registered dietician, Sarah Zangerle
. Not only that, she explained why she had chosen what she chose and gave some great occupational therapy tips to folks who have tremor and stiffness. Did you know that keeping your elbows in and arms close to your body — even resting on the table — will give you more control while eating soup or drinking from a glass? See the attachment
that Sarah prepared. By the way, I was delighted that chocolate-covered strawberries were included.
Even though it was after lunch and the talk was about sleep, Dr. Karen Blindauer
did not have anyone dozing off in the audience. This topic is so important because poor sleep can result in worsening of some of the symptoms of Parkinson's disease. Why are sleep problems so common in people with PD? Parkinson's disease is more than a dopamine-deficiency disease. Karen covered vivid dreams, rapid eye movement (REM), sleep/behavior disorder, obstructive sleep apnea, restless leg syndrome, periodic limb movements of sleep, and daytime sleepiness. Fascinating information with lots of suggestions to personally improve your sleep!
I think another reason we didn’t have daytime sleepiness during the symposium was that after each speaker, we had a “movement break
.” Stretching, standing, stomping, shouting or exercising our voices in some fashion at least once every 30-60 minutes keeps our blood circulating and “wakes us up.” It helps to keep us flexible and balanced. Keeping blood circulating well, may help with orthostatic hypotension — which is the decrease in blood pressure some people with Parkinson's disease experience when they go from sitting to standing.
While visiting the various exhibits
, I enjoyed seeing information on additional helpful activities for people with Parkinson's disease such as Tai Chi, dance, treadmill exercises and even therapy dogs. Lily, the gentle yellow lab from the Delta Society, Certified Therapy Dog program, stole my heart. I visited exhibits from a supportive home care company and an Adult Day Center. These businesses can often keep a person living at home much longer by giving caregivers an additional opportunity for assistance.
Finally, while I thought that our biomedical engineer, Chris Butson, PhD,
was brilliant, and I feel privileged to work with Dr. Brad Hiner,
who has been working successfully with DBS for 13 years, I must say that my favorite speaker was the last speaker and her husband. Attorney Kristin Tietz-Janis
is my older sister. My goal by “giving up my presentation slot”, was to have her inform and educate us on very important, often misunderstood legal issues. I hoped she could simplify perceived complicated issues. I was content that she and her husband, Kevin
, gave an extremely helpful presentation on estate planning. They explained the differences between wills, living wills, durable power of attorney and health care power of attorney. They even put us through a real-life exercise, which I thought effectively illustrated the importance of estate planning. I suspected Kristin was smart, but it was good to see the proof of it.