I've had a number of people ask about the conference I attended in mid-September. It was put on by the Northwest Parkinson's Foundation and was held in Spokane, Washington. I will try to recap it for you, as well as give the highlights.
To start, a panel of three professionals spoke on slightly different topics: Dr. Pinky Agarwal, a movement disorders neurologist, Dr. Leo Norfleet, a master's level physical therapist, and another doctor, Dr. Laurie Mischley, who specializes in nutrition in regards to neurology.
Dr. Agarwal, MD, gave a simple PD101 type approch for her presentation, sharing the symptoms of PD (such as tremors, stiffness, slowness, and balance problems, and how the disease might be treated). She covered depression, which tends to complicate the disease, drooling issues and more.
Treatments she addressed were the use of the drug Donepezil, used for memory issues in PD; extra dosing of meds needed due to nighttime sleeping issues or consideration for using Chlorazapam, a sleeping agent. She also addressed the issue of difficulty in swallowing and stated that chewing gum or sucking on candy might help strengthen the muscles used in swallowing. Dr. Agarwal didn't say much about it, but did bring up a clinical trial that is being conducted for the use of a levodopa inhaler. Now wouldn't that be something…
Dr. Mischley was up to bat next and her first statement got my attention: HOPE is medicine. She went on to say that dopamine is produced when a feeling of hope resides within the patient. Enough to cure us? No. But more than if we had no hope, which isn't the case. There is always hope to be found if we choose to look for it. And recoginize it. Things that make you feel good produce dopamine – hugs, giving away encouargement, being encouraged, helping someone, kissing a child's booboo. Find ways to give yourself away and you'll feel better for many reasons.
Laurie is the author of “Natural Therapies for Parkinson's Disease”.
Leo Norfleet, a physical therapist that has worked with PD patients in the Spokane area for over the last twelve years shared ways in which a PD patient can help themselves by improving their posture (ears over shoulders and shoulders over hips), and increase their strength and flexibility (by fully extending legs and arms). His suggestions to pace yourself when you wallk by going fast and then slow every five minutes contributes to endurance, and to practice marching and trying to hit your heel down to the ground when walking.
After our first break, we returned hear Dr. Jennifer VanWey, a clinical psychologist who works mainly with people in their senior years. She stressed the importance of being able to talk about the disease right from the get-go so that in the later stages, the doors of communication have already been cracked open with caregivers, loved ones and friends. Patient and caregiver changes were addressed and how they might affect the relationships between the two, given the caregiver is a family member.
A wonderful lunch was served as the Spokane Tremble Clefs Choir sang. This is a group of individuals who gather to do voice strengthening exercies by singing together. It is made up of PD patients and their spouses/caregivers. This group always looks as if they have a blast together. If you love to sing, you may want to find out if there is a group in your area. I believe the program is nationwide.
After lunch concluded, Dr. Anthony Santiago, MD, a movement disorder specialist was up. Strange, but the after lunch presentations were my favorite last year and this year was no different. Anyhow, Dr. Santiago, as many of you may remember, is my neurologist/Movement Disorder Specialist. He recently ended his position as director of the Muhammad Ali Parkinson's Center in Phoenix, AZ and is now a Professor of Neurology, Section Chief of the Divisions of Movement Disorders and Ataxia, and Medical Director of both the Parkinson's Disease and Movement Disorders Clinic and Movement Disorders Fellowhsip Program at the Unveristy of Minnesota College of Medicine. Whew… that is a mouthful. All to say, he is gifted and – a gift to others.
Even if he wasn't my doctor, his presentation still would have been my favorite. He spoke with such authority and knowledge of his subject, that being PD. He gave an overview of the history of PD, beginning with the first diagnoses to present day research. If I tried to recapture for you all he said, I'd have a brain freeze. What I found refreshing is his hope in PD research and upcoming treatments to help the patient lead a better life.
One of my favorite moments of the conference was when he finished speaking, there was a break and there were several people attending that had been under his care while he served in Spokane. I was fortunate to have a table fairly close to the front and was able to watch him interact with some of his past patients. He was so kind to them, took as much time as they needed, and made them feel (like he always does) like they matter. Now that's a doctor who is interested in seeing you get the best care. I'm glad he's a professor nowbecause I'm hoping his bedside manner is 'caught' by his interns/fellows.
Lynda LeBlanc, an instructor for Dance for Parkinson's in Spokane, led those in attendance in dancing. Because I had gone to get a picture at the back of the room with my favorite doctor, I was standing at the back when this part of the program began. This was my second favorite part of the conference. Watching from behind was a blessing. Seeing all these people moving to beautiful music just about made me cry. It was so awesome and inspiring. And Lynda's leadership and her tone of voice just added to the beauty of it all.
I beleive that Dance for Parkinson's is also a national program. You can contact the Spokane Parkinson's Resource Center for more information and they do have a DVD available for doing the dane movements at home.
Lastly, a cartoonist from Alaska, Peter Dunlap-Shohl, shared some of his favorite cartoons (including the one above) about living with Parkinson's disease. They were great and had the whole place laughing.
If you are able to attend one of the Northwest Parkinson's Foundation HOPE conferences in the future, I cannot recommend it highly enough.
***While browsing for one of Peter's cartoons to share in this post, I came across his blog, On and Off: The Alaska Parkinson's Rag. He gives a detailed summarization of the conference (because he was smarter and brought a recorder). I recommend it if you want more details. Thanks Peter!