Living with Parkinson's #4 - We All Need Support – and Understanding

By Debbie Shapiro, a fun and inspiring woman and a great writer too, who just happens to 

 have Parkinson's

I've always been the type of person who likes to talk, talk, and talk some more (which is probably why I became a writer). My best friends are good sounding boards, who will listen quietly as I rehash with them whatever it is that I'm going through and then enlighten me with their insights and feedback. Then, once I'm all talked out, they give me the space to think things through. Sometimes, it takes just for a few hours; more often, it takes a few days, and occasionally, it might even be a few weeks until I digest all the information and am able to form my own opinion. And of course, as a friend, the relationship is reciprocal.  

But now, although my friends are really amazing – they empathize with my challenges and encourage me to do whatever I need to do to stay healthy—they cannot really understand me. I need to connect with people facing the same challenge.   

That is the reason why, on the very same day that I was diagnosed with PD, I contacted the Israeli Parkinson's Society to find out if there's a Parkinson's a support group in Jerusalem. "Yes," I was told. "There is one, and it's in English! This Thursday they will be meeting for the first time after a two month hiatus."

But the meeting was a real disappointment. Four elderly patients, two with full time aids, had come together to discuss who would be the one to run the future meetings, since the person who had been doing it until now was unable to continue  - for health reasons, of course. And then, since my tremor and lack of balance are not obvious, the women were curious to know why I thought I have Parkinson's. After I finished listing my symptoms, one of the ladies commented, "Oh, yes! That sounds exactly like what Sara K. had. The doctor also thought it was Parkinson's, but he was wrong. She really had…" and with that she named a much more serious and usually fatal degenerative disease. 

"Right! I remember her. She was such a nice lady," added another. "What ever happened to her?"

"She died."

"Why yes, of course. How could I forget. Nebuch…"

"She suffered so much! But it was still a shock when she passed on."

All four women nodded. "Those poor orphans," sighed the woman in the wheel chair. "She left two teenage sons, and a married daughter."

"And do you remember so and so, what she went through?" asked another. "The doctor also diagnosed it as Parkinson's. But of course he was wrong."

"Well," I felt bad interrupting their reminiscing but this was not the type of support I was looking for. "Let's hope I 'only' have Parkinson's."  

Everyone laughed. But it was bitter laughter.

Although I did not find the support and friendship that I was hoping for, the evening was not a total waste. I learned some very important information: that if I don't want to lose my Bituach Leumi Disability payments (akin to America's Social Security Disability payments) I must apply before the official retirement age, which is presently age 62 for a woman and 67 for a man.  So the following day, I contacted Rabbi Goldental of Degel Hatorah's Public Assistance Program for his help in navigating the enormous amount of red tape involved in dealing with Israeli bureaucracy. Although at the time of my writing this column I am in the midst of getting my application approved (hopefully), I want to publicly express my gratitude to Rabbi Goldental for both his empathy as well as his assistance, and recommend that anyone living in Israel in need of help in dealing with Bituach Leumi contact him.  

When I returned home from the "support group" I felt empty and sad. But according to a famous saying, ice cream cures all woes (ok, I admit, I just made that up - but  it's true, at least sometimes…),  so after a few hours of self pity and (a minimum of) one ice cream cone, I decided to stay away from support groups that do not provide me with positive support. Instead, I'll focus on maintaining my health, without worrying too much about the future.

And the truth is that without being over-optimistic, there really is a lot of hope for the future. The Michael J. Fox Foundation, the Parkinson's Foundation and the Parkinson's Disease  Foundation, to name a few, are presently investing millions of dollars into finding a cure for  PD, and there are several that appear to be very promising, including vaccinations, drugs to stop the progression, light therapy, and stem cell research.  And as I wrote in a previous column, I am doing everything in my power to control my Parkinson's.  Yes, it really is exhausting to go swimming or to work out at the gym every day and when I come home I need to rest in bed for at least an hour, but at the same time, it's also a lot of fun!

So what am I doing for peer support? I am grateful to have found a couple of creative women, both writers who are leading a busy and fulfilling lives while staying proactive about PD. Like me, neither of them have the time or energy to keep their PD a secret. As one so succinctly told me, "Being upfront about what I'm going through gives me the freedom to do what I must do to stay well. I don't have to waste precious energy coming up with all kinds of excuses for saying 'no,' or for missing a family simchah. People understand, and they're not upset with me." And the truth is that to the uninformed, finding time and energy to go swimming or exercise at the gym while missing a close friend's bar mitzvah or ordering takeout food appears, well, WEIRD – which is why it's so important that we remember to judge people favorably.  

That reminds me of something that happened some twenty five years ago. I had returned home after being hospitalized for blood clots in my legs. Since my blood was continuing to clot, I was under strict doctor's orders to remain in bed with my legs elevated or – believe it or not - walk briskly!  The doctor actually told me that I must take a 45 minute power walk each day, but that the moment I stopped walking, I am to return to bed with my legs propped up above my heart level with a minimum of three pillows! Each time I left my house, I wanted to wear a huge placard with the words "Dan L'kaf Zechus," "Judge me favorably" written across it in huge neon red letters. I could only imagine what people must have been thinking. Since I couldn't cook, we were receiving meals from the local chessed organization. Since I couldn't clean, seminary girls were coming to help out in the house. And what was I doing? Gallivanting around the neighborhood!

Judging our friends and neighbors favorably is really the greatest support that we can give them.  Being surrounded by friends, neighbors, family, and even strangers who can look beyond the externals and realize that they might not be aware of the full story, that they might be missing important pieces of the puzzle, really does make all the difference.  

Living with Parkinson's Part 3 --- Finding My Balance while Off My Noodle

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

It's funny, because sometimes I feel as though my Parkinson's is actually forcing me to become healthy.

I know that sounds crazy, but it's true. I’ve mentioned before that I’ve begun an exercise program to delay the progress of my disease. That’s because Parkinson's is caused by the slow death of the dopamine-producing neurons in the area of the brain that controls movement, and it is the resulting shortage of dopamine that causes the tremor, stiffness, and general slowness associated with Parkinson's. Researchers believe that exercise causes the brain to use the existing dopamine more efficiently, which translates into less medication for the same effect.

Many people, including myself notice that after a good workout, their Parkinson's symptoms disappear for several hours.

Some 15 years ago, I attended a wedding where HaRav Nosson Tzvi Finkel, zt”l, was mesader kedushin. It was painful for me to watch his body twisting and turning as he struggled to recite the brachos and I was in awe of his perseverance and devotion to his talmidim. At the time, I thought that this was Parkinson's. Now, I understand that what I saw was dyskinesia, a side effect of the medicine levodopa that is used to treat Parkinson's, rather than part of the disease itself.

A well-known neurologist in Israel tells his newly diagnosed patients that it has been his experience that patients who exercise regularly are often successful at controlling the symptoms without needing to take levodopa. And that is the reason that I have made exercise a top priority in my life.  As one of my friends told me, "Debbie, that's your mitzvah right now. To do whatever YOU can to stay healthy. It's a wise investment."

I started out by joining a water aerobics class, which I dubbed, "Off My Noodle." That's because while the other women were able to follow the instructor's rapid directions while gracefully balanced on their noodles – a cylindrical foam tube used for water exercises – I would end up spending most of the class off to the side, propped against the edge of the pool, struggling to position both feet on the noodle, or (after finally succeeding with step one) losing my balance and, with an enormous splash, falling into the water. Although I never managed to get further than step two, I eventually learned to stand on the noodle, an accomplishment that I am really quite proud of! 

(But despite all my attempts to impress my husband with a vivid description of my newly discovered talents, he still has no idea what a water noodle is – only that it is not related to his favorite supper, spaghetti!)

Although I loved the water aerobics, it left me so exhausted that I spent the rest of the day in bed, either craving chocolate, or giving in to my cravings and eating chocolate, which is definitely does NOT fit ino my plan to be proactive about my health. Instead, I joined a hydrotherapy group. Imagine my delight when we were told that we were going to practice our balance by standing on a noodle. While the other ladies struggled unsuccessfully to maneuver themselves onto to noodle, I gracefully stood in the middle of the pool, without falling off… at least until we started to exercise! 

Keeping my balance is one of my biggest challenges. In one physiotherapy session, the physiotherapist instructed me to walk along a straight line, heel to toe. It's a good thing she was standing at my side to catch me when I fell – several times! Although I joked that if I was pulled over for drunk driving, I'd fail the test and end up in jail, the experience was really very humbling. I had been going to work every day, leading a very busy life, without ever realizing that I had lost the ability to do something as basic as walk on a straight line!

That's why, every day, as per the therapist's instructions, I devote several minutes to walking heel to toe along the lines of my floor tiles.  At first, I was constantly giggling as I lost my balance and had to grab onto one of the dining room chairs to keep myself from landing on my nose. Now, however, I am proud to say that I can actually walk the length of my house, not only heel to toe, but also on my tippy-toes as well as balancing on the back of my heels(clap, clap!). But just to keep my ego from getting too inflated, even my youngest grandchildren are still better at it!

The physiotherapist also recommended that I spend time at the gym working out on the cross trainer (also called an elliptical trainer), treadmill, and stationary bicycle. So twice a week I walk 25 minutes to the gym (it's really not that far; I'm just a slow walker. In better days it took me only 10 minutes!), work out for an hour, and then walk back home. It's not easy for me, but each time (which is basically every time!) that I prefer to stay home and cuddle under the covers with the latest copy of Binah, I remind myself of something a friend told me. Her cousin, who has Parkinson's, came to Israel for two weeks, and during that time ignored his exercise regime. All his symptoms became much worse.  

So, I guess I had better run!

I'm having a lot of fun sharing my experiences with you, the reader.  For those of you facing a neurological disorder, I'd love to hear from you- your challenges, triumphs, and yes, disappointments. Although I have not (yet) written about the koach of emuna, I can honestly say that my knowledge that whatever Hashem sends my way is custom made for my personal tikkun and growth is what enables me to face this challenge head on without (too much) bitterness and anger. So please, take this as a personal invitation to share with me, and, with your permission, with the wonderful growth orientated women of the Binah Family!   

 

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."