It’s hard to begin this. My heart is heavy. My frustration is deep. My fear is palpable. My partner, Paul, was recently diagnosed with Parkinson’s. We are quite certain he’s been battling it for quite some time—possibility decades. But, out of necessity he compensated for some of the earliest signals something was wrong. When he finally realized he couldn’t control what was happening he reached out to me for help. It was clear there was something lurking inside of him. I’d been concerned for quite some time. But whenever I’d mention it to him he’d brush off my queries and assure me nothing was wrong. But we both knew that wasn’t true.
Unfortunately, unlike many diseases and medical conditions, there’s no blood test or medical procedure that can definitely identify what’s going on. It’s only as the cluster of symptoms are bundled together that you realize you are facing the toughest battle you will face in your life. There’s just a cluster of symptoms that are indicative of something like Parkinsons.
By time Paul received the news he dreaded to hear his condition had already significantly impacted daily life. Despite his specialist’s observation that he was in the relatively early stages—his rapid descent into the hell of the disease shocked everyone including the medical professionals caring for him. A series of falls in December 2019 ended up with bumps and bruising that required ambulance rides to the ER. After a long night in the ER after his second bad fall, the ER doctor recommended he go to a rehabilitation treatment center where they could work on both his gross and fine motor skills and speech. After nearly two weeks there, he was transferred to a longer care facility where he could get on-going PT in hopes he could return home.
Sadly, within a month of his stay in the rehabilitation center his condition has taken a dramatic turn for the worse. For some unknown reason, over one weekend he lost the ability to walk or stand and began experiencing hallucinations—some lasting for days. He’s aware he’s losing time with these foray’s into an alternative universe and that, coupled with his growing awareness this disease is going to eventually “get him”, leaves him shaken. Yesterday, sobbing he told me, “Diane, I’m in the toughest battle of my life. I’m scared. But I’m going to beat this.” There was no point in telling him this was one battle he couldn’t win. So I nodded my head and told him I’d be there cheering him on. There’s really nothing else to say is there?
When he is in a normal state, he becomes quite nostalgic about his life regaling me with stories about the good and the bad; things he would do differently and things he would do all over again. I have decided to capture these stories in short vignettes. I hope to share these with his family and friends. And, especially his son. I also hope to share what I’m learning about Parkinson’s so that others can benefit from what we are learning. Where this journey will take us I really don’t know. But I do know this, his life has meaning. And, his legacy will live on.
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