While most people will be familiar with the external, physically manifest symptoms of PD, very few have a good grasp of these internal, hidden states, and so don't realize that people with Parkinson's (PwP) are also frozen, rigid and trembling on the inside too. Having engaged with very many PwP around the world, I've learned that there are common personality types, and we tend to have shared, overarching themes of internal emotional states. In particular, I've found that many of us can be described as high achievers, but are wracked with self-doubt and guilt on the inside. This finding appears to especially true in the cohort of PwP who eventually end up with a rigidity dominant form of Early Onset Parkinson's Disease.
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Impacts of Diagnosis on Parkinson's Disease
I hope that my experience might be a catalyst for change, because, in speaking with a significant network of people with PD around the world, there are many with diagnosis and aftercare treatment experiences even poorer than my own. I feel, therefore, we do need an overhaul of how the healthcare diagnoses and treat people with Parkinson's. Simply stated, the current experience of too many PwP (People with Parkinson's) is that they are prescribed drugs as a singular treatment pathway and given a narrative of hopelessness at diagnosis.
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The Beast Within and Parkinson's Disease
There is a beast inside me. The beast is not my Parkinson's illness. The beast is myself. Parkinson's is just the empty cage. Let me explain, because although this is difficult reading, I believe it is important to share this epiphany.
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