On The Road…Again!

Mara and I attended the Partners in Parkinson’s event in Atlanta recently, along with an estimated 650+ other patients with Parkinson’s and their loved ones.  We were also honored to serve as panelists during one of the breakout sessions.
Our day started with meeting a couple from Knoxville as we walked to the convention center. We introduced ourselves and agreed to stay in contact since they had not yet found a support group.  After getting registered, we enjoyed the complimentary breakfast with a couple from Atlanta and soon selected a table to sit at for the morning presentation, joining a father and daughter from the area.  We had already added six people to our support group and the day was young!
Three main topics were covered in the morning moderated by longtime journalist Dave Iverson, a Parkinson’s patient himself, who serves as contributing editor for the The Michael J. Fox Foundation.  Each topic was followed by Q & A from the audience. The first topic was The Many Faces of Parkinson’s Disease.  Dave questioned three Parkinson’s patients about their diagnoses and the path their lives have taken since, reinforcing the fact that this disease impacts everyone differently. As Dave said “If you have seen one person with Parkinson’s, you have seen one person with Parkinson’s.”
Next up was Seeing a Movement Disorder Specialist: What to Know, Ask and Expect.  A Movement Disorder Specialist MDS is a neurologist who has received additional training in PD and other disorders. One of the cool things you can find on the Partners in Parkinson’s website is a searchable database to help you find a movement disorder specialist near you.

Dr. Stewart Factor, Director of the Emory University Movement Disorder Clinic, conducted an “appointment”  with a PD patient and his wife.  It was an interesting, informative session prompting many of us to realize that our initial consultation may not have been filled with as much information about PD that he was covering.

The final topic was Parkinson’s Research: The Road Ahead where Dave questioned three experts involved in clinical trials and PD research.  This was an informative session that engendered many questions from the audience including when to start levodopa, diet, new drugs in the pipeline, clinical trials and others.
After lunch, the breakout sessions were offered twice so you  could attend two different sessions.  The sessions were Living Well with Parkinson’s, presented by The Davis Phinney Foundation; I’m Still Wondering About…, an opportunity to ask additional questions; and Building Connections with Family, Friends and Community, the one we participated in.You could also browse the Resource Fair where over 20 local organizations and care providers offered information for PD patients.Since we were involved in both of our sessions, we couldn’t attend any of the others but I did hear a lot of positive response about The Davis Phinney presentation.
Our panel included Bill Wilkins, diagnosed 8 years ago and very active in the Parkinson’s community through his organization, The Wilkins Parkinson’s Foundation,  and India Pender Martin, whose grandfather was diagnosed when she was three and who is also active in the Parkinson’s community.  Our panel was expertly moderated by Claire Meunier, vice president of  research engagement for the Fox Foundation.
Mara and I discussed the path we have been following since my diagnosis, how we communicate with family and friends, our trip to Kripalu and why I started the blog.  Bill discussed his diagnosis and how he became active in the Atlanta community and across the US.  India talked about dealing with her grandfather’s Parkinson’s symptoms at an early age and her desire to find a cure.  Then we took questions from the audience.  We received positive comments from attendee’s after each session, and I handed out quite a few cards with the blog address — so might pick up a few more readers!
We are glad we accepted the invitation to participate on this panel even though neither of us are fans of public speaking. It became easier for me when Bill said, “I can meet a person with PD and immediately strike up a conversation.” Which is true for us too. We added many new friends to our support group. Partners in Parkinson’s allowed us  the opportunity to “strike up a conversation” with fellow people living with Parkinson’s.
At the closing session Dave interviewed Mahlon R. DeLong MD, who just received the Lasker Award for research that led to Deep Brain Stimulation (DBS).  They talked about what’s next and the possibility of using DBS to help with balance and gait issues that aren’t solved with the current procedure.  I am excited about that since those are my worst motor symptoms.
So that’s what happens at a Partners in Parkinson’s event and if one is being held near you we both recommend attending, you can find the schedule for the remaining events here.
Next…we are in Northern Michigan to celebrate Mara’s  brother’s 70th birthday.   Our timing is right and we will attend the Grand Challenges in Parkinson’s Disease conference held in Grand Rapids where we will meet up with a couple we met at Kripalu.
Whew this was a long post, thanks for sticking it out to the end and stay tuned for the next post.
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