While everyone experiences a different path for movement disorders like Parkinson’s and PSP, the reality is there are some aspects of the advancing disease that are generally experienced by most people. Information gives people power. Care partners and adult children often feel powerless and desperately need to and want to plan. They have different needs, questions and concerns. The disease is hard. To avoid hard conversations does not serve our community.
We have designed a workshop focused on activities of daily living and common symptoms that accompany disease progression. This workshop includes an intimate conversation with movement disorder physicians, tools to aid in communication about the disease progression so that people are able to continue to live their very best life, in spite of a diagnosis.