Monday, June 18, 2012

Young Onset Parkinson's Conference recap

On Friday, June 15 and Saturday, June 16, I went to the Young Onset Parkinson's Conference in Irvine, CA.  I have actually never been to a conference related to Parkinson's and have not met personally with any Young Onset patients.  The main themes I got from the conference were exercise, eating healthy and taking control of your own care.

I arrived at 3:00 pm in Irvine after driving up from San Diego.  I registered and sat down at an empty table in back by myself.  All of a sudden another gentleman sat down next to me and introduced himself as John Ball.  I was shocked, excited and inspired as I had read John Ball's book, Living Well, Running Hard: Lessons Learned from Living with Parkinson's, a few years ago.  I immediately told him I knew who he was, read his book, and regretted I did not have it with me for him to sign.  If you do not know who John Ball is, he was diagnosed with Young Onset Parkinson's at age 39 after dealing with symptoms for ten years previous to that.  Since he turned 51, he has run upwards of 29 marathons and one ultra-marathon.  He is now in his upper 60s and still runs and this past year, his foundation Team-Parkinson, raised over $175k at the LA marathon.

Needless to say, I had not even heard the first speaker and was already psyched and enjoying the conference.  I found the speeches for the most part interesting, but what I really appreciated most was talking with other people who were going through similar issues as me.  I met many people who were in there 40s or who had been symptomatic since their 30s and 40s.  We discussed family, medication strategies, diet and exercise.  It was amazing to hear how many people were working out four to six times per week.  Also, I found people who had seen the benefits of adjusting their diets and the effect on their medication effectiveness.

People were from all walks of life.  Some were still working and had young children like myself while others were retired or working in new careers that had opened up to them as a result of their diagnosis and life situation.  However, one thing was very clear, those who were exercising, watching their diet and managing their disease the best in terms of understanding their med schedule and how everything effected it seemed to be doing the best.  You could tell they had better attitudes and had not let their disease take over their lives.  Instead, they were managing their disease and living their lives to the fullest.

I will definitely be gong to more of these conferences and will start attending the Young Onset support group in San Diego as that was another strategy that I saw many people using.  There really is nothing like talking to other people who get what you and your family is dealing with.

I'll leave you with some interesting notes and sayings I took from the other talks:

  • With respect to exercising: What fits your busy schedule better, exercising one hour a day or being dead 24 hours a day?
  • Mediterranean diet may help prevent Parkinson's and reduce symptoms.
  • Guided imagery reduced tremor significantly.  Stress increases tremor.
  • Important factors in Exercise - Intensity, Specificity, Difficulty and Complexity
    • Keep yourself learning
    • High intensity exercise with correct form showed significant improvement in gait 
    • What exercises are better:  Skill base vs aerobic
      • Dr Petzinger believes more important to do skill based training
      • Any practice where learning is involved is important
  • When shuffling stop and step off with less freezing leg
  • New therapies on the horizon:
    • Categories: 
      • Disease modification - no meaningful treatments yet, but a bunch on horizon
      • Symptoms - dopa responsive and non-motor based
    • Drugs:
      • Isradipine - protects neurons in mouse models, blocks l-type calcium channels, yet dopamine cells are not the only important ones.  
        • People who take the drug as anti-hypertension drug lower risk at getting PD unlike other anti-hypertension drugs.  
        • Give isradipine to fish it chews up alpha-synnuclein
        • 60 patients and 60 controls, results are out next week so watch for it.
      • Urate and PD, high levels (folks with gout) have lower risk of PD.   People with higher irate levels showed slower progression of the disease.  Fox foundation doing study with trial that will be done in 6 months.
      • Other drugs include:
        • Disrupting protein aggregation:  inhibition of alpha-synnuclein
        • Pump drugs:
          • Duodopa
          • Apomorphine
    • Gene therapy:
      • GABA
      • Neuterin
  • Enrollment for clinical trials is major issue

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