Our Parkinson’s Journey
Six months after the diagnosis
My spouse has early-stage Parkinson’s. I haven’t written about this for quite a while because we are still trying to comprehend our modified paradigm for growing old together.
“Great opening paragraph, Carla.” Truthfully I wanted to say my pain has been excessive; I’ve been struggling, so much so that I couldn’t even put words to my suffering. Silence is not a writer’s friend, so readers, please buckle your seatbelts.
It’s been about six months since the “P” word was uttered at a neurologist’s office. “Have a nice day,” the receptionist said, as George, my husband, flew out of the office and home to me, to reveal his shocking diagnosis.
Since that day George has had a litany of tests, exams, and evaluations such as touching his nose. I’ve watched my husband walk up and down hallways like a runway model. This is a test most neurologists use to assess motor function during their exams. The “P” word is the sole consistent conclusion reached by each professional who has examined George.
For me, this process has been like a bad case of shingles. Shingles are usually a hidden yet painful neurological condition, one which I personally became familiar with years ago.
During my bout of Shingles, out of necessity, I continued my busy work schedule, which included public appearances, and speeches. All the while I appeared well physically, but the lesions on my back were tremendously painful. I had difficulty concentrating and felt like I was faking it in life, barely getting by, until the pain subsided.
Now, with Parkinson’s, all appears well on the outside for George and me, yet on the inside, we are both cauldrons of confusion, sadness, pain, anger, and sometimes joy. Unlike shingles, there is no physical pain yet, but the mental pain feels far worse.
Also, shingles usually heal — no such luck with Parkinson’s. It is an irreversible and incurable disease. Another profound difference is there is a vaccine for shingles and nothing of any sort on the horizon for Parkinson’s.
To sum it up, Parkinson’s is like having shingles in your soul. We appear well on the outside, but inside we harbor tremendous fear and pain.
“From a Comma to a dot”
In the photo above, I’ve included the results of two DAT scans. This test measures the level of dopamine transporters in the brain. In a healthy brain red areas indicate proper levels of dopamine, and when the red areas shrink or vanish, it is highly likely one has Parkinson’s.
We recently visited a renowned expert in the field of Parkinson’s. I cross-examined him like the good lawyer I used to be. My husband’s scan resembled the bottom photo. The doctor said, “See that comma on one side, and the dot on the other?” I reluctantly agreed with him. It was clear as day, there was no debate. Further, he said, “George’s comma has lost its tail, which means his Dopamine supply is diminishing, on just the right side.”
Never did I believe this nasty disease would boil down to a comma or a dot buried deep in George’s brain. Lastly, the doctor said, “It’s only a matter of time before the other side will go from being a comma to a dot, and on both sides, the red images will likely fade away in the abyss of his brain. It is at this stage that Parkinson’s is considered advanced.”
A large bronze-tipped arrow entered my heart; the doctor twisted it clockwise 3 times.
One noticeable area of change is in George’s demeanor. We now have a meltdown about once per week.
This week, George, once a high-powered businessman, had a meltdown over activating a luggage air tag. After watching him become increasingly frustrated, he asked me to help him. I grabbed the token and finished pairing it with his phone. Then I discreetly tucked it into his suitcase. Crisis over.
Just a short time ago our roles would have certainly been reversed; I am a technology challenged, and my husband has handled all technology in our lives, including our in-house computer network.
Last week his meltdown was over a broken printer. I had been away, and George met me at the door with an urgent request to print out an e-mail on my printer, as his was broken.
I first wondered how long he had stood there waiting for me, then I fulfilled his request. I took a few moments to gather myself to rehearse how I was going to tactfully remind him that he could have routed the email to my printer, avoiding all the anxiety he had awaiting my return. The man before me was not my husband.
I hope these are just isolated incidents. We are still awaiting additional tests and evaluations relative to George’s cognitive functions. Chances are he is and will continue to be a changed man in terms of his thinking and reasoning.
But each day I love this changed man even more. George has become humbler and kinder. He has become more affectionate and observant of small things in life such as turtle tracks on the beach, or the beautiful call of a seabird.
So, comma or dot? I can’t control it and I don’t really care. Growing old together, bring it on.
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