Living With Parkinson's Part II as appeared in the Binah April 15, 2015

Subtitle: Putting on my new hat

Byline: By Debbie Shapiro, a fun and inspiring woman (and a great writer too) who just happens to have Parkinson's.

There's nothing like family.

The moment I returned home from the doctor, I plunged straight into making lunch, and not just any lunch: a three-course meal, including soup and desert! I needed to prove to myself, to the world, and yes, even to my husband (or perhaps I should say, especially to my husband!), that I am really, truly, capable of doing anything and everything, and that I WILL NOT, I repeat, WILL NOT allow Parkinson's to get in the way.

Not me!

I'm the girl who can whip up a Shabbos for ten in two hours, including homemade challos, gefilte fish, and fresh chrein.

In truth, though, I was fighting an almost overwhelming desire to throw myself in bed and stay there for the next ten years (okay, that's an exaggeration, but certainly until the next morning).

That evening, I asked my husband how he was feeling. I was sure he wouldn't be too upset. After all, not only had he suspected it, he even suggested that I see a Parkinson's specialist.   

"I'm worried how I'll be able to take care of you," he answered. His eyes were liquid.

My retort was an instant, "YOU WILL NOT TAKE CARE OF ME. We'll take care of each other."

We were both floored by the other's response.

But I still had to tell the kids. And I was petrified. I’m their MOTHER. Mothers should be there for their children, not the other way around.  

So I — brave woman that I am — let my husband do it.

And he did. He made sure to tell them when I was not home. But between going to work and going to the gym (research has shown that exercise, especially lots of aerobic exercise, significantly slows down the rate of Parkinson's deterioration), he had plenty of opportunity. That's because, crazy as this might sound, after being diagnosed I found myself busier than I had been in months, though I knew that would have to change. 

A couple of days later, I was at the gym, resting between the water aerobics class and the dance class (yes, those first few days I really did overdo the exercise thing!) when my second-to-oldest son called.

"Hi, Mommy. How are you feeling? Everything okay?"

"Sure. I just finished with the pool. In five minutes, I’ll be dancing!”

"You sound great. Are you sure you're really okay?"

"Yup, I'm fine…."

Boy, were we beating around the bush!

Cough. Pause. Cough. "Ah, hmmm, Tattie spoke to me last night. I told the other kids about it. We're all upset, and worried. We think that it's important to be with you now. So tonight we’re all coming to Yerushalayim. So it won’t be hard for you, we’ll meet at the bagel restaurant."

"It's okay," I countered. "Nothing has changed since yesterday, only now we understand why I've been feeling so rotten. No reason to put yourselves out for me."

"But we want to. We want to be with you now, as a family. Together."

Aren't my kids the greatest?  "Look at what your mother has to do to get you guys to come visit me!" I quipped.

It was a beautiful evening. We all crowded into the enclosed smoking section of the restaurant so that we could have some privacy. And when we were all seated, and my kids sat there, squirming, waiting for someone to say something – anything – I blurted out, only half in jest, "Okay, so what's this all about? You want to ask about the will?"  

Everyone laughed. Then we talked, and ate, and ate some more, and yes, we really had a great time together.

At the end of the evening, the kids unanimously agreed that once a month we'd get together for melavah malkah. Nothing fancy, just the couples, without the grandchildren; time to bond as a family.

***

One of the reasons I am writing this column is to educate my readers about the challenges of having a neurological disease. Since most of the time I look perfectly healthy, people don't realize that certain things are difficult for me, such as multi-tasking. I discovered this when, as part of my initial assessment, I was asked to walk slowly down a corridor while responding to very simple arithmetic problems. It was impossible. I could either walk, or problem solve, but I could not do both at the same time.

And that brings me to the supermarket disaster.  One afternoon, instead of spacing my activities, I went straight from the gym to the supermarket. And there I had to wait on a long checkout line, which, because of my balance issues, was extremely difficult. Just as I started placing my groceries on the conveyor belt, my cell phone rang. It was the hospital asking for my email address to send me the results of some tests I had taken there. I told the secretary that I couldn't talk at the moment, but she insisted that she must have the information NOW.

Never, and I repeat, never, try to give an email address over a cell phone to an Israeli who doesn't know English, especially not in a busy supermarket, and especially if you have Parkinson's. That's because when people with Parkinson's go into overload, they often crash, and that's what happened to me. The room started spinning, and I thought I was going to faint. I had to get home, NOW!  

In the midst of telling the lady from the hospital that my address begins with a B, like in bais, and not a D like in dalet, while holding on to the shopping cart to keep myself from falling as I attempted to place the groceries on the conveyor belt, a woman who was only buying a few items asked if she could go ahead of me.

I said, “NO.” The woman from the hospital asked me if I had just said, "O." 

The woman who asked to go ahead of me was complaining to everyone that I was a horrible, self-centered person. The lady from the hospital kept on asking me to repeat the letters.  The man at the counter was ringing up my groceries. I was shaking uncontrollably and trying not to burst into tears.

Just as I was about to leave, the cashier instructed me to bring a form to the to the service counter. The clerk there stamped it and told me to put it in a box about five meters away. “If you want, you can do it. I can't," I answered and shuffled away. I lost my balance twice.  I heard him laugh. He probably thought I was on drugs.

Somehow, I managed to get home. As the car service driver placed the groceries on the curb and my husband came downstairs to greet me, I ran upstairs and threw myself into bed. I felt like a bowl of not quite jelled jelly. And then to top it all off, my husband, was upset that I had disappeared on him instead of standing outside to keep an eye on the groceries while he brought them upstairs. Without me there to watch them, he had to carry several heavy bags at once up two steep flights of stairs, not an easy task for someone who is an official senior citizen. He couldn't understand why it was impossible for me to wait downstairs for another five minutes .

But how could he understand? How could anyone understand? Or, as a shomer Shabbos woman in Australia who also has Parkinson's responded  responded when I told her this story, "That's what your Parkinson’s friends are for. They're the only ones who know what you're going through."