Categories: Parkinsons

On January 11, 2020 Ron and I attended a Parkinson’s Symposium sponsored by the Michael J Fox Foundation, called Parkinson’s IQ and YOU.

These sessions are being held throughout the country and started last fall, I believe this was the third one. The next one is March 7, 2020 at the Diplomat Hotel in Hollywood, FL.

This program was similar to other symposiums targeting patients and caregivers but was presented from perhaps a more humanistic (or how do I live the best I can, even with this disease) I helped with the Parkinson Foundation table, discussing the Aware In Care program. But we also had time to visit with Kevin and Kathy and Aunt Estelle.

Ron and Gloria Friedman with
Kathy and Kevin Murphy
Arboretum near Phoenix
  • Designed for people diagnosed less than 5 years and/or early onset.   But everyone should take away something valuable
    • Cost – FREE
      • Breakfast, snack and lunch are provided
      • A copy of MJF Foundation’s Parkinson’s 360 Real Talk for Patients and their Families
      • A program guide with an Appointment Checklist of things to ask  your doctor
  • Why is this different from other programs. 
    • My personal advice to someone newly diagnosed is — education, exercise , and a Movement Disorder Specialist.  This program shows you how following those three bits of advice can lead to “living well with Parkinson’s”.  So in summary, it’s presented from a “human” point of view
  • Program -Hosted by Larry Gifford, a Canadian radio personality who has a podcast “When Life Gives  You Parkinson’s”
    • If I Knew Then What I Know Now
      • Title is self descriptive, a panel will give pointers for what has worked for them or their loved one.
    • Seeing a Movement Disorder Specialist
      • Volunteers will do a example of what a meeting with a movement disorder specialist should “look like” on an initial visit and on a visit 10 years later.
    • Exploring the Latest Parkinson’s Research
      • This session starts with an explanation of “what is dopamine”
      • Covers products close to coming to market that should be more effective than current products
    • Building Your Care Team
      • This was the most lively session of the day in Phoenix
      • This session will include a movement disorder specials, a physical therapist, social worker or other people that will explain their roll in your care team.
      • It is important that everyone works together
  • Vendor Fair Examples, not a complete list, of vendors
    • Patient Care and Research Opportunities
      • There were several companies and medical schools looking for specific people for clinical trials
    • Allied Healthcare Providers
      • Groups with specific programs such as LSVT and Parkinson Voice Project
    • Support Group and Exercise Programs
      • Rock Steady
      • Pound Community Organizations
      • Local to area such as Senior Centers, local music groups,  home safety and nutrition
    • National Partners
      • Parkinson Foundation
      • American Parkinson Disease Foundation
      • Caregiver Action Network
      • Davis Finney Foundation
      • Michael J Fox Foundation
    • Pharmaceuticals
      • Products shown included Rytary, a new version of Amantadine, scanning equipment for diagnosis, etc.

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