Thursday, May 4, 2017

Neuro Note #4: Parkinson's Disease

One of the topics we are learning about in our neuro class is Parkinson’s disease (PD). I realized that it was one thing to learn about the facts and statistics of a condition, but that I learn best through personal experiences and learning from someone who has experienced the condition firsthand. These realizations made me want to find someone’s experience with Parkinson’s disease and learn what it is like to live with this disease.  After searching several personal blogs, I came to Terri Reinhart’s website, Studio Foxhoven, and her blog about her Parkinson’s disease called “My Parkinson’s Journey.” Terri writes from back in 2008 to the present year about her experiences and challenges. She was diagnosed in 2006 with Parkinson’s disease. Her very first post explained her prognosis of Parkinson’s disease, how she was aware that Parkinson’s disease was progressive, and that life is uncertain. However, she mentioned that she wanted to live a “normal” life. She also made a list of things that she would want to have from friends and family. As I was reading the list, it made me realize that my list would be similar. Really, the whole list was just about living life and enjoying it. In addition, all of the things she wanted people to be able to do with her would be what an OT would also need to know. In one of our foundations classes this term, we discussed that if a client has a condition that wouldn’t be curable/treatable, it would be imperative to treat the client according to their priorities and “bucket list.” When reading this blog post, I automatically thought back to that foundations discussion.
One particular post that stuck out to me was from 2011 about setting goals. In OT, setting goals is an important aspect of our services. Client’s goals are the most important and are considered when we are setting intervention goals. Her major goal when she first discovered she had Parkinson’s was to learn how to enjoy her life with her new condition. This is what OT is all about! This shows that we are not just treating the diagnosis; we are treating the client!
In one of her recent posts, she discussed her fatigue and exhaustion. Like we learned in class, fatigue is one of the main symptoms of  PD, and it can be a challenging symptom. Terri discussed that it is the hardest part about having Parkinson’s, and that when she experiences feelings of grief, they are usually related to the fatigue that comes with the disease. In addition, she had other posts that were related to OT think such as wanting to be seen as a person and not seen for her disease, and she wants respect from her doctors. After reading this, I am so excited to be this change for individuals who want to be seen in terms of what they CAN do instead of what they CAN’T do.

Reinhart, T.  (2008, June 15). Studio Foxhoven [Blog Post]. Retrieved from

1 comment:

  1. Outstanding post, Katherine! Very insightful and with lots of OT-think!!

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