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Something Needs to Change

 The research is out there.  The case studies are available. Exercise helps those with Parkinson's.   In my opinion, it isn't just beneficial, but it is necessary if you want to live a full life with PD.

I know the docs are busy but this isn't brand new research and those being  diagnosed need to know that exercise will help them and the sooner they start, the better.  It is crucial that the word gets out to the patients...those who live day in and day out with this disease. They need to know it on the day of diagnosis.  How do we get the word out if the doctors aren't telling the patients?

It is  left up to the patient and/or care partner to do the research and find out for themselves.  On top of dealing with a life changing diagnosis, you now have to do your own research, be your own advocate, and find your way to better health on your own.

I wish I could personally appeal to every neurologist out there and show them the research and show them what I have done for myself and tell them what I have seen in others.  I don't know if they would even listen or believe it's true.  Maybe we need to bring Parkinson's patients into the medical schools and nursing schools to bring awareness and show them real living examples of the benefits of exercise.

If you sense frustration in my writing, it is because I hear of patients  who have been living with PD for months or sometimes years and are not aware of how they can help themselves.

I'm not sure of the solution to this problem but we need to work together to figure it out.

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