2015

Parkinson’s is not something I can be “saved” from. It’s here and it’s the new norm, and there’s so much to relearn. To think, always to think, to relearn what it is to think, to have intent.

If I’m talking to someone, I have to think: Speak up, Debbie, and I have to keep thinking that throughout the conversation. Then we’re good.

I need to think about walking. If I’m chatting and thinking about what I’m about to say next, my steps go small, pigeon-like, what they call the “Parkinson’s walk.”

One time, I was focusing so hard on my steps, I almost didn’t hear an ambulance siren pealing right near me.

But I’m nothing if not a fighter.

I started to write a series of articles called “Living with Parkinson’s.”

I had to record this experience, I had to be able to laugh about things in retrospect, I wanted to show that you could still keep your humor even in a situation like this. Mostly, I wanted to chronicle this journey that was taking me further and further away from the Debbie I knew, far out into the unknown.

I was sharing personal details about my life, putting a lot out there, and I thought, pseudonym, sure.

But I was asked to use my real name, to come out with it and own my experience, and my husband was on board with that — he said that if even one person benefits because they know there’s a real person behind the writing, it’s worthwhile. So I put my name right there in the byline. It’s not a secret, I was saying.

I knew so many people were trying to keep their Parkinson’s a secret. There’s so much shame and stigma — in the random, erratic movements, in the loss of control — although this disease hits 1.5 to 2 percent of the Ashkenazi population. That’s a lot of us. But I knew that people were so busy hiding their condition, it was keeping them from leaving the house, it was keeping them from pushing themselves, and that immobility led to a much quicker decline. People were literally dying from embarrassment.

I wrote that series as a mission, and it garnered the best sort of feedback — it was making an impact. Thanks for showing me I’m not alone, I’m not the only one in this. Thanks to you, I started to get out of the house again. The emails kept on coming.

It happened that as a result of that series, I won a scholarship to the World Parkinson Congress in Portland, Oregon. The whole deal: airfare, hotel, the conference itself.

It was a mega event for medical professionals, researchers, and people with Parkinson’s. It was all there in one place; we could get access to cutting-edge information and speak to professionals all weekend long.

There at the Congress, I met Rabbi Moshe Yitzchok Gruskin, who’d opened LifeSpark Jewish Center for Parkinson’s in Lakewood.

“You should open one, too, there’s a huge need for the English-speaking community in Israel,” he said to me.

I was noncommittal. I was doing my thing already. I’d been open with the world, I shared and impacted with my pen; birthing an organization was another league I didn’t know if I wanted to reach.

“Hey, I know a great doctor, Professor Nir Giladi, in Tel Aviv. He could talk if you get a crowd together,” the Rabbi said.

I took the doctor’s contact details, though I didn’t think anything would come of it. Why would a Tel Aviv doctor want to come out to Jerusalem to address frum people?

But when I called, the doctor said, “Of course.”

“What?”

“Of course, I’ll come and talk in Jerusalem.”

We were on.

But who were we exactly? It was just me.

I put out an ad that there was going to be an informative talk for people with Parkinson’s and their families. On a whim, I conjured up a name to lend some “officialness” to the piece of paper: Tikvah for Parkinson.

It sounded about right. It was what I — and the people who’d come — needed, I knew.

We put out 100 chairs in the small hall we rented, and a friend of mine who came early said, “Take away half the chairs, there’s nothing worse than empty chairs.”

But come they did. I got so many phone calls to check that it was indeed for family members, too, and many Parkinson’s patients came under the guise of being family. But they came, that’s what mattered.

They filled 50 chairs and kept coming, we put the other 50 back in the hall, and then they stood until we could find more chairs. Three hundred people showed up that night.

Professor Giladi came in. He looked out at the size of the crowd and tears gathered in his eyes.

He spoke about medication and healthy lifestyle. He explained that drugs help with the symptoms, and it’s imperative to take them, but they don’t stop the progression of the disease. Deep brain stimulation is another, albeit limited, option. Exercise is the only thing that creates new circuits and natural dopamine. “If anyone in this room starts to exercise for one hour a day, five days a week,” he said, “I promise you that despite having a degenerative neurological disease they will feel better in a year from now than they do today.”

After the doctor left, people started to talk among themselves. They’d come out of the woodwork and here they were. Exposed and vulnerable and desperate for something.

“What does Tikvah for Parkinson do?” someone asked.

“I think they help to implement the exercises the doctor spoke about,” someone else said. “Oh, and they provide support, of course.”

And that’s how Tikvah for Parkinson was inauspiciously born.

Tikvah L’Parkinson we called it, and I knew that it was right, that it had the blessing of Heaven. Wouldn’t you know it? The first letters of each word — TLP — spelled out tulip, which as it happens, is the global symbol for Parkinson’s.

2018

TO have Parkinson’s is to constantly be in grief. My faculties, parts of me, were dying, never to return. I couldn’t wash the dishes and have a chat anymore. It was one or the other. It was hard to lift things; it was extremely difficult to get on or off a bus. The limitations started small, but they were adding up until it was all in my face.

I’d go through the stages of grief multiple times. Denial, anger, bargaining, depression, acceptance. I looped through them all, again and again. Each day could be a different kind of a day. I could be okay up to a point, having found some way to compromise, to get around a limitation, but then that would go, too, and I’d be back to denial.

I davened for acceptance, to be able to accept myself and be okay with myself, despite my limitations. To know I was still Debbie. With acceptance came peace, but it’s hard work, constant work to attain.

And as I was journeying personally, I was also running Tikvah L’Parkinson.

We were offering education and support, things like occupational therapy, help with speech, and several exercise group sessions. I had to impress upon other people to do their exercises, to keep up the daily regimen, that this was their way to fight the progression of the disease.

Exercise is really the way to go, but only if one makes it a real priority. It has to come first, whatever else is going on — Erev Shabbos, Erev Yom Tov, simchahs.

There were real wins. One of our members, a maggid shiur, was unable to put on his tefillin when he joined the organization.  After several weeks of dedication to exercise and participating almost daily in our program, he was back in his game, he could walk into a room and give his shiur again, never mind don tefillin on his own.

The organization was growing. More and more people were joining our groups. Running it infused me with meaning. I was struggling personally, but I was able to help others. I saw people who were adding their own difficulties to this G-d-given challenge. I saw how stricken they felt in their own minds, like they were being punished, finished off.

I had changed the language around my disease in my own head. I was challenged, not stricken — and I passed that on.

I knew that people would take the cue from us patients. I knew it from my sister, who was still involved in chesed in her community in California, despite severe dyskinesia, uncontrollable movements.

She’d regularly serve as a volunteer at community tzedakah events. “I have Parkinson’s,” she’d tell people disarmingly, “that’s why I’m shaking like this.”

Her “okayness” showed others the way.

I could do it, too, and so could our people at Tikvah.

2019

Tikvah for Parkinson was taking me places. At the World Parkinson Congress in Kyoto, Japan, I came as the Israeli ambassador.

All the while, more of my capabilities were going.

There were two things I held on to. Humor, for one.

A few years back I’d taken up Israeli folk dancing. I loved to dance, and I was able to keep it up even as the disease progressed. Dancing is a creative intentional exercise, it’s not an executive function, and crazy as it sounds, I would dance my way through a session, but when I had to walk the short distance to the road to get a taxi, I’d often find I couldn’t walk, and someone would have to help me into a taxi after I’d spent an hour dancing away.

It’s hard to explain. The dancing created dopamine circuits and depleted dopamine at the same time. I’d also have adrenaline while creatively engaging in dance and movement. When I found I couldn’t even walk a few meters afterward, I could cry, or I could find myself funny. I chose to laugh.

Once, I was on a bus and I handed the money to the driver. While I was waiting for the change, my cupped hand started to shake, and I looked like your common schnorrer, shaking my palm for a coin.

“Geveret, have savlanut,” the driver told me.

“I have Parkinson’s. I didn’t realize,” I said.

“Sorry, please sit down.” He was soft under the tough exterior.

I sat down and just laughed that I’d had a schnorrer moment.

The second thing that kept me going was the Torah of Breslov.

My husband was a talmid of Reb Moshe Feinstein ztz”l, and he’s also been drawn to Breslov for a long time. When I got to know him, I wasn’t too sure about that aspect; I married him in spite of that. Today, I’m so grateful that he made us all Breslovers.

Breslov focuses on the positive. To explain the difference between the mussar approach and the Breslov approach: as per the mussar movement, if someone has a pimple on their face, they want to get to the root of it and destroy it, but the Breslov approach is, you have a pimple, yes, that has to heal, but don’t forget what a beautiful face you have.

The whole picture. The whole person.

For me, with so many “pimples,” it was something I held on to. I’d always be Debbie, no matter how many things went.

A tzaddik falls seven times and gets up…. Don’t get stuck over the fact that you fell, Reb Nachman says, do teshuvah, but go on, get up with simchah.

I have problems with my balance and often stumble and trip, sometimes even falling — how much did those words speak to me? It influenced the way I was able to deal with the test of Parkinson’s. Parkinson’s was giving me a fair run for my money, but it wouldn’t destroy me, or take away from who I was.

2020

And then came Covid — and Zoom — and that saved me.

The world had gone to sleep, at least at the onset of Covid. People weren’t going places. Tikvah shut down live activities. We started doing exercise instruction by Zoom and that’s when I really had to commit myself to physical exercise. I started to see what a real difference it could make.

I’d been doing exercise for years — and encouraging our people, too, at that — but still, deep down I’d never really taken to it. Give me a good book over an exercise class any day.

In my youth, I’d run away from gym class when I could, and duck from the ball when I had to stay. When I brought home my report card, it was straight As, and a D in Physical Education.

“Oh, that’s okay,” my mom said, dripping intellectual snobbery, “it’s not what we’re interested in, anyway.”

The vibe was: In our family we’re too smart to exercise.

But during Covid, in the day-in, day-out exercise groups that kept me sane and kept me moving, I realized that at my stage, exercising was a matter of life and death. I saw enormous improvements after consistent exercising, and I made a decision to keep giving it the focus and priority I genuinely needed to.

Through Covid, I exercised diligently, and got into great shape. I started to really enjoy it. The flow of endorphins, the elation of moving. Later, I would use exercise to heal a twisted kneecap. I’d be able to avoid surgery by exercise alone. Decades after high school, I’d earn my A+ in Physical Education.

2023

For almost eight years, I was busy running Tikvah L’Parkinson; doing outreach work, helping others. The realization dawned gradually, like a sunset in time-lapse: It’s too much for me, it’s time to give over the running of the organization and focus on my own health.

Things were taking me longer. I had some additional health problems and needed more time to exercise. It was time for more self-care, and I knew it was right for me to slow down, but everywhere there were indications that people saw it differently.

“You know why I don’t exercise Thursdays or Fridays?” a friend who has Parkinson’s told me. “I need to make Shabbos food, my husband likes two types of kugels….”

Not one to mince words, I said, “What do you think your husband would prefer, two kugels on Shabbos or a wife?”

“Ouch,” she said.

I went on. “So much can and should be outsourced. You’re not indispensable as a cook. You need to take care of yourself.”

The limitations of Parkinson’s are especially difficult for women to come to terms with. We’re mothers, wives, community people. Through my work with Tikvah, I’ve seen that the women hold on to their activities and roles much more fiercely. There are women still cooking for Shabbos, while men in the same stage of the illness are confined to a sofa.

Of course, there’s good in still doing, including huge benefits on emotional health, but for the Parkinson’s patient, it’s knowing how much to push yourself, but not to outrun yourself.

And I say to the women whose husbands are challenged with Parkinson’s: Help your husband, but don’t do it all for him. Only help if he really can’t. Don’t take over. It’s a balance, as everything is.

For me, this turn toward self-care, toward recognizing my limitations and what was important to focus on, was years in the making.

Once, when my children were small, I got up early on a Purim morning to daven at a vasikin minyan. By the time I got back, tired and drained, I had no energy for Purim with small children. I’d thought I was a big tzadeikes, but how much better would my Purim have looked if I’d slept in a little that morning?

What I had to do now with Tikvah went against my deepest grain. Stepping down was not intuitive nor was it easy. It was a while until I finally took on a director. I still had a back seat in the organization, and I looked on, keeping quiet, as decisions were being made that weren’t decisions I would make.

Letting go of my baby called Tikvah is a process, but that’s what I needed to do.

“No, I’m not available for a meeting in the morning, I go to the pool then,” I had to say, knowing that they might go ahead with the meeting anyway.

It’s just as well; for myself I needed to put up my boundaries.

Deep down, there’s a measure of relief in slowly giving up something I’m not up to anymore. I know I created something special, but I also know I’m not capable of running it to the extent I used to, and at the level  it needs. I’m aware of my limitations and I’m trying, every day again, to be okay with them.

This is humble pie. The slow stepping back. The facing up to who I am. Looking in the mirror and being able to smile back at my changed face.

I’m a fiercely independent woman, but learning to ask for and accept help is one of the biggest challenges of having Parkinson’s — and aging in general.

There’s a role reversal with my children. And that’s normal, but so hard as well. I’m trying to be gracious about it. I really need their help, and at the same time, I can get it without seeing myself as needy, I can see it as giving them the opportunity to help me.

I’ve spoken in schools and seminaries and at women’s groups about my journey, about what it means to age, to start heading down the mountain.

I give perspective and also awareness. Judge me — and others — favorably. I’m in a precarious situation, and when I take a bus I need to sit right in the front. It’s important that the bus driver sees me when I get on and off the bus so that I don’t fall. I know that’s the area reserved for men, and some days it’s very full, but that’s what I need to do. If you see me there, don’t get judgmental or self-righteous; trust a frum woman to do right.

Hearing me, people understand, they start to think. That’s why I keep talking.

2024

Parkinson’s should not be confused with Alzheimer’s, although because the former often presents issues with word recall, it could seem like the memory is affected.

But while my memory is strong, and my ideas and creativity are there, brimming and bubbling, the ability to recall words, to manipulate them and arrange them elegantly, is failing me. Which is why I’m not writing this article myself.

There goes an identity of mine: Writer.

I had to give up a strong identity as director of Tikvah, although my role in spreading Parkinson’s awareness is far from over. I speak to newly diagnosed people, explaining the disease and how it’s possible to live a full life, and give them guidance, advice, and support. I get phone calls from people around the clock. It’s a quieter, different role; it’s where I’m at.

I take care of my physical health with rigorous daily exercises. I joined a four-hour therapy group run by Tikvah twice a week, where the women there — also exercising, stretching, and pushing themselves — have become close friends. I take the help I need, and I’m also looking out for my own emotional well-being, still achieving dreams, even now.

Several weeks ago, I came upon an ad for a trip to Poland with Rabbi Paysach Krohn. A trip like that has been a dream of mine for years. I wanted to touch history, to go to mekomos hakedoshim, the camps, see a world that was.

Despite myself, I inquired, and there it was, the opportunity to go, mine for the taking.

“Go,” my husband said. “Fulfill a dream.”

I was off. On my own, with a group of people who rallied around me, giving me a hand when I could walk, pushing my wheelchair when I couldn’t. Ten years into Parkinson’s, I scaled an icy hill, snow on my nose, dusting my coat, and made it to a hillside graveyard, to daven, to hear Rabbi Krohn talk of communities that were, to feel the great welling in my chest of what it is to be a Jew, a link, both backward and forth.

At the gas chambers, we cried out “Shema Yisrael Hashem Echaaad.”

“It’s one, goodness and harshness, all one,” Rabbi Krohn said, and then he added, “We say in Shema bechol me’odecha, which is usually translated as ‘your money,’ but what it really is, is the thing that’s most dear to you. Would you give that up for Hashem? The Chofetz Chaim’s son-in-law said he wants to stop teaching Torah because he doesn’t have time to learn. And the Chofetz Chaim told him, ‘Your me’odecha is learning Torah. That’s what you’re giving up.’”

The trip was immensely impactful — beautiful and heartrending and heart-opening. I’m back home, and still processing it, trying to figure out what is my me’odecha — and how I can use that in my avodas Hashem.

“You sound like a teenager on a seminary trip,” my husband says. “You never did grow up, really. You’re still that nutty idealist.”

And maybe I am.

They said to me on the trip, “Boy, do you have guts.”

And I said, “Either that or I’m crazy.”

So I still have that. The feist and the fun and the determination to make it to Poland, on my own, with the maggid of our times. I’m still scaling mountains, the Carpathians and the summits of my mind, living a life as full as I can. And at the same time, I’m scaling down. Facing myself. Doing what’s right for me now.

I’m a Parkinson’s patient with a touch of seminary-girl idealism, a wife, a matriarch, still a woman of the sun, and maybe now, the moon, too.

(Originally featured in Family First, Issue 899)