Bargaining for Hope
The Parkinson’s Journey Continues
Our Parkinson’s journey continues. My husband George was diagnosed with this disease in December of 2023. We have both been processing the news the best we can, at first, keeping it private for several months.
When we felt able, we began to tell our loved ones. The word is now out and spreading within our large network of friends and family. Those who are internet search masters have been exceedingly helpful in finding nether-world information about treatments, cures and tonics. Our phones ping day and night with esoteric articles and information which seems exciting to the sender, while also waking us at odd hours. When situations like this rock your world, loved ones naturally want to “do something”, and we are exceedingly grateful for all the support. Keep the pings coming.
We, however, firmly believe that face-to-face meetings with experts in the field is the best way to meander through this boggling illness. There are many options, but no clear path; our vision becomes muddier.
By the process of elimination, we have been able to sideline the use of medications and various other forms of treatment, for the moment. But that’s for today. What about tomorrow? Parkinson’s can turn on a dime, as evidenced by my neighbor who lives three floors down. I shudder when I see what has happened to him in just four short years. But he is not my husband.
“Move on.” I tell myself, as the shudder subsides.
“Move Forward.”
“Forward? Is there any forward with Parkinson’s? Onward, is more like it.”
Yesterday, we saw neurologist #3, the grand poo bah of Parkinson’s in South Florida. He was a wonderful man who possessed extraordinary knowledge and compassion. The doctor spent an inordinate amount of time telling us things we had already heard from neurologist’s numbers 1 and 2. There was very little new information.
During our appointment I raised George’s recent weight loss using a new drug. The doctor seemed intrigued that MAYBE there is cause to explore if there is a relationship between this drug and Parkinson’s.
I translated “reason to explore” to mean HOPE. My brain goes into overdrive, “does this mean we may be looking at a possible false positive?”
“We’ll rerun the tests,” he says, BUT I’m certain, he still has Parkinson’s.”
The lawyer in me can’t let go of this glimmer of hope, I ask again:
“Is there a chance that repeat testing may show, that the first DAT Scan was influenced by the drug?”
Patiently, the doctor responds “probably not, but we will repeat the test.”
In a slightly stronger yet polite voice he says, “George still has Parkinsons. ”
As we left, I vowed to cling onto this molecule of possible good news until the test is rerun. Maybe he is ordering the test for me, not my husband. Who knows. There is still a sliver of light shining at the end of this muddy path. We are going to need reinforced boots for this journey.
As I have mentioned in previous stories, we exited through the waiting room filled with other patients with movement disorders. Over the past few months, I’m not proud that I have sometimes abhorred the sight of walkers and wheelchairs, anywhere. Today, though, I must pause and reflect; these very patients had this exact conversation with this expert doctor, in the past. How long ago, the disease only knows. They’ve digested the news and moved onward.
As hard as it seems, I challenge myself to espouse compassion and respect for the unintended journey that all of them are taking. I’m not yet completely accepting that I too am on this journey.
“Embrace your new future,” Carla.
