Nina's Story

The beginning of the biggest change in my life came when the doctor said to my husband, “I think you have Parkinson’s.” Warren didn’t react, and in fact, I wasn’t sure if I had heard correctly, or if Warren didn’t hear what was said at all. That was in 2008. Twelve years later, Warren was gone.

 

We read everything we could get our hands on. We raised money and marched in the annual Parkinson’s Walks. But, if you didn’t know anything about Parkinson’s, you would hardly know that something was wrong with Warren. He had no tremors, no festinating gait, no slurring of words, no balance loss --- just crappy handwriting that got worse over time, and assorted aches and pains. Was this a misdiagnosis? Dopamine seemed to keep Warren in check, so dopamine he continued to use. We had an amazing doctor from Beth Israel, and we saw her every six months. Very little changed with symptomology for many years. I kept waiting for the hammer to fall. How could this be Parkinson’s? 

 

Well, it started falling the night Warren started hallucinating about our dead dog. He told me he saw him clear as day at the foot of our bed. That was scary. He then admitted that he had been “seeing” small animals and children all around him. This was in 2014. The meds started changing – and of course with every new med that fixed one problem, another new problem resulted. It became an endless cycle of symptoms, meds, new or worsening symptoms, new meds. All I could do was watch and read up on anything I could about each new development. It was so scary, so frustrating, and so heartbreaking.

 

In 2016, we both retired and moved to Florida. We planned our dream “vacation” life of sun, sand, and golf. What could be better. And it was great for about 14 months. 

 

Warren was not a complainer. I don’t think I ever knew how he really felt about having Parkinson’s. We never discussed it. Maybe we should have. 

 

In the winter of 2017 when we were playing golf – Warren shared that he was seeing two golf balls when he looked down. Jokingly he would say he didn’t know which ball to hit. 

 

There were multiple visits to eye doctors with no answers. His vision was testing perfect. What was causing the double vision? Finally, we were directed to a neuro-ophthalmologist. After an extremely thorough examination, the doctor told us that Warren didn’t have Parkinson’s, he had something called PSP: Progressive Supranuclear Palsy. I immediately looked it up on the internet and thought I would have a heart attack right then and there. But how could that be? He had been seeing doctors and being treated for Parkinson’s for 9 years. This was a totally different disease. We went immediately from the eye doctor to Warren’s movement doctor. She agreed – you can’t have one disease morph into another. And so, new combinations of medicines were prescribed, and new experimental treatments tried… but nothing helped.

 

Warren still showed no tremor or festinating gait so common in Parkinson’s, but it now seemed that all the Parkinson meds were no longer effective for anything. His vision continued to be problematic, and more symptoms were starting to show up. It was time for us to visit our New York City doctor. This time, not only did the hammer fall, the whole toolshed came down with it. Yes, it was possible for PSP to occur – it was called PSP Parkinsonism. A whole mess of different Parkinson-like neuro-diseases that affect the brain. This one was mean and relentless. In three years, the vibrant, voracious, active, slightly overweight man I had known and loved for fifty years could no longer walk, talk, eat or swallow. And with every loss he suffered, with every pain he felt, and every horror and humiliation he endured, a little of me died also. Warren never complained about his illness. In fact, he didn’t know the extent of its prognosis until a few months before he died. I was always afraid that the hopelessness of the disease would take away any will he might have had to fight, and so I didn’t tell him.

 

Watching someone you love experience a debilitating illness is torturous. But it is also a life lesson. You must learn to be strong, soft, patient, tough. You must be physically present but emotionally disconnected. You can’t break down; you can’t get mad. You also must recognize when you can no longer care for that someone on your own.

 

I don’t know if the way I handled things was the right way. Maybe I should have been honest sooner, maybe we should have discussed feelings more often. I am a “fixer” – that is what I do – but I couldn’t fix this no matter how hard I tried. I tried to give Warren hope until there was no hope left to have. He stayed home with the help of an incredible aide --- my angel --- I miss him every day and pray he is someplace without pain, playing golf, talking loudly and eating lots of ice cream.