It's time and past time for bed, but I thought I'd try to pound something out before I go. I wanted to tell you about a conference I went to the weekend before last.
Michael J Fox's Partners in Parkinson's presented a free seminar in Cincinnati with breakfast and lunch provided, and parking validated. We had 4 sessions, including an open forum Q & A at the end. We also had access to a resource fair offering lots of freebie goodies, and valuable information on exercise, movement disorder specialists, participating in trials, working with an advocate, etc. I signed up to receive at least 2 full-size books that talk about exercise, all free of charge.
The first session was "The Many Faces of Parkinson's" and featured a panel of four people in varying ages, genders, and stages of PD. It was moderated by a journalist who, himself, also suffers from the disease. This was the perfect opening session and served to remind us what an individual disease we all share.
The second session gave us an insider's view of what happens during an appointment with a Movement Disorder Specialist. The doctor was on stage doing an actual evaluation on one of his patients, and seeking input from her husband, who was also on the platform. As the doctor examined the patient, he told us the purpose of each mobility test he performed. I don't currently see a Movement Disorder Specialist, so this session was enlightening and informative for me.
Session three was about the effect of Parkinson's on family members, and how different families handle the topic. The panel was made of 2 people with Parkinson's, along with 2 people who are family members of Parkinson's patients. It was interesting to see how different people handled the news of their diagnosis with their families. I just told my family immediately, then we all learned about it together -- that was the best way for me, and I have no regrets about the way I handled it. It did, however, take me a long time to tell people I know at work and at church.
The last session gave us three options: Q and A, Healing the Mined and Body, or browsing the resource fair. We chose the Q and A, and I'm glad we did. Our panel was comprised of a neurologist, a research and development person, the moderator, and a Parkinsons patient. At the end, I stole a moment of the doctor's time for a quick one-on-one about my mediation, and how to adjust it so I might feel better. He was unusually gracious and seemed eager to help. As soon as I got home, I called my neurologist to set an appointment to regulate medication.
AND...we had the most delicious food! Upon arrival, we were invited to breakfast: every kind of breakfast pastry and fruit, along with coffee and at least 2 kinds of juice. At lunch, we had deluxe sandwiches on artisan bread (your choice of meats and cheeses), pasta salad, and fruit, along with a choice of drink. Snacks later in the day were chocolate-dipped strawberries, cookies, and pretzels...yummy!
I was impressed that the providers thought to host a hospitality room with comfortable furniture and some iced drinks for anyone who needed to rest or have quiet time. I didn't need to use the room, but it was comforting to know it was available.
I had two big takeaways from the event: One was that a nurse advocate is available to anyone who wants one, free of charge. This person can help you prepare for doctor's appointments and can help you put together your team of health professionals.
The other big thing I learned is that I am in control of my own care. I don't have to sit around on my hands waiting for someone to tell me what to do next. I can research and request medicine, I can seek treatment from other professionals besides my neurologist, I can get a second opinion, I can form my own support group. I'm in charge of my own health and am not bound to care from a doctor who sees me twice a year, though my neurologist is excellent and well-respected in the community.
I just wanted to share with you all what a good conference it was -- if you ever get a chance to go to one, you should do it!
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