FROM OUR FAMILIES( continued)
IX. A Life Well Lived
Judi Nudelman
“ A loving carepartner who was so lucky to have had so much to lose when PSP impacted Harvey”
My husband, Harvey, passed away peacefully at home January 17, 2018, after dealing with the effects of progressive supranuclear palsy for over five years. His life was a life well lived, both personally and professionally. Harvey’ s five-plus years with PSP was also a life lived as well as possible.
We first heard the terms“ possible PSP, progressive supranuclear palsy” in January 2013 on our first visit to the neurologist. For more than a year, I told our doctor,“ something is wrong with Harvey.” Harvey, an agile racquetball and squash player, started having occasional falls. Harvey, always able to gather facts and quickly make decisions, struggled with the simplest decisions. Harvey, who loved life and always had a twinkle in his eye, was apathetic. Harvey, who loved people and lively social interaction, was quiet and detached. Harvey, the smartest person I knew, couldn’ t analyze information. Our primary care doctor never investigated. He finally ordered an MRI and said,“ Aging.” Then I decided to take Harvey to the neurologist, and he told us,“ Mild cognitive impairment and possibly PSP.”
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Harvey was unaware of how he was impacted. When asked how he was, he would say,“ I am okay, but you’ d better ask my wife. She doesn’ t think so.” This held true for the rest of his life. He had a neurological component called anosognosia, meaning total lack of awareness. This was a good thing for Harvey: he wasn’ t unhappy because he wasn’ t aware of his losses. But for me, it meant, for the first time in our marriage, I was alone on a difficult journey, with total responsibility for making every decision.
Harvey, with a PhD in neuroscience, an accomplished researcher and teacher in the field, couldn’ t access his neuroscience knowledge base. I had to learn about neuroscience and get the knowledge needed to be Harvey’ s navigator, advocate, and decision maker for plans and actions related to his condition. Sadly, there was no PSP support group in Austin and very little local understanding of this disease. I participated in several of Janet Edmunson’ s online CurePSP support groups, which helped prepare me for what might come. I also attended other types of local support groups and extracted information nuggets that applied. However, Harvey and I were experiencing a different world from the people in these groups, so their help proved limited. In spite of this, we managed to make our PSP journey a journey well-traveled.
My most important messages from our five-year journey are:
• Understand what might occur but know that the details of your future can’ t be predicted. Though similarities exist with others, the journey is unique for everyone on it!
• In the five years of his journey, Harvey never spent a night in a hospital or away from home. He was always in the home he loved, with friends and family often with him.
• Harvey never had swallowing difficulties or problems eating.
• Several weeks before he died, Harvey managed to go out with family on four separate occasions to celebrate holidays. What a gift that was for all of us!
• Caregivers need to pay attention to their own needs while caring for their loved one. Accept and reach out for help from friends and families. Cherish their company on the journey. Two years into