Harry

I was originally diagnosed with Parkinson’s almost 4 years ago. I had been experiencing difficulties with balance and bladder urgency. Before my symptoms started, I had a career in sales and traveled nationally 5 days a week for years.  But eventually, traveling and working became a greater challenge for me. After speaking with my internist, he ordered an MRI. The MRI showed enlarged ventricles filled with fluid. He did not mention normal pressure hydrocephalus (NPH) but told me a little about shunt surgery and referred me to a neurologist.  My brothers are physicians and were optimistic about shunt surgery.  

This optimism did not last long. My neurologist, who is a highly regarded Movement Disorder Specialist, was not concerned with the MRI.  Instead, she did a 15-minute exam that included activities such as tapping toes and fingers and walking up and down the hall. After the exam, she diagnosed me with Parkinson’s. I did not know what NPH was, but being told I had Parkinson’s was a gut punch for my family and me. My neurological degeneration continued at a fast pace. Soon, I was terminated from my job as I had greater difficulty performing. I decided at 69 to retire.   

My neurologist never did follow up on the internist’s request for the drainage test. She was, and still is, 100% sure I have Parkinson’s.  I changed neurologists after over two years of advocating for myself. It took so long because I encountered reluctance to contradict the diagnosis of my former neurologist and her opinion that NPH was not real. 

I was eventually referred to a new neurologist who performed a spinal tap, with a physical therapist to document my symptoms before and after the spinal tap. We presented the results to Dr. White at UTSW who agreed I was a good candidate for shunt surgery. His group conducted additional analysis and testing. The effects of the drain were instant. I was able to walk, speak clearly, and even skipped around the room with my granddaughter. The happiness of my wife moved me. I had not realized how much trouble I was in due to the progression of my symptoms. Three months later, I was scheduled for shunt surgery.  

I am now 6 months post-shunt surgery and doing very well. My NPH symptoms have improved, though I am not cognitively at 100 %.  Dr. White, at my request, referred me to a physical therapist and cognitive therapist to aid in my recovery. In addition, I am able to drive again, attend daily religious services, and attend a study group.   

Most important for me has been exercising and building a community of friends. I was fortunate that the Parkinson’s community was very supportive. Through this community, I found Rock Steady Boxing, which is a Parkinson’s physical therapy (PT). This has become an important part of my life. I attend classes three days a week to exercise. I have not found an exercise program similar to this in the NPH community. I was referred to Rock Steady by the therapist I saw for Parkinson’s, though I found out she does work with NPH patients as well. 

Also, the Parkinson’s Voice Project, a nonprofit that helps people with Parkinson’s regain and retain their speech and swallowing, has helped me get my voice back, both physically and emotionally. I learned through this process, most things were covered by Medicare and my supplemental insurance, except for Rock Steady Boxing.   

Through this journey, I have learned to take control of what I can, and that is my advice to others on the same journey. Do not waste time with things that you cannot control. I also look for opportunities to help others. Post-surgery, my advice to others is to advocate for yourself. Reach out to family and friends. Work on yourself, physically, cognitively, and spiritually every day.  I look for inspiration in the world and people around me.

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