by Debbie Shapiro, a fun and inspiring woman (and a great writer too) who just happens to have Parkinson's.
I sat opposite the doctor, waiting for the words that I didn't want to hear. I knew what he was about to say, but I continued to reassure myself that my weakness and difficulties with balance were nothing more than a figment of my rich writer's imagination.
Then he said the words I had been dreading to hear. “I’m afraid it’s Parkinson’s, Mrs. Shapriro.”
I blinked – hard – to keep back the tears. My hands were shaking. But then again, they had been shaking a lot these last few weeks.
"Very mild," he continued, trying to boost my spirits. "I'll give you some medicine to help keep it under control. Meanwhile, it's important for you to exercise – I suggest Tai Chi – and of course, you should try to lose some weight. That will help with your sense of balance and will prevent you from falling."
I pointed out that I had recently started going to water aerobic classes. And as for losing weight, well, attempting to do that has been the story of my life.
"Excellent, but try Tai Chi."
Several months before that, when I could not continue to ignore the fact that I was having difficulty with my balance, I spent an afternoon researching Tai Chi classes in Jerusalem. Most of them were held in public gardens, and all were co-ed, certainly not appropriate for an Orthodox woman, at least one who would write for the Binah Magazine!
The doctor was still smiling. "And I'll see you again in another three months,” he said. “Hopefully, your disease will progress slowly."
Great, I thought to myself. I don't want to live in a wheelchair! I have so much more to accomplish!
My mind was flooded with questions. Should I continue working full time? Perhaps I should devote myself to the things that are really important – take time to grow spiritually, to learn more, to share my strengths with my husband, my children, my grandchildren, while at the same time doing everything physically possible to battle this disease?
But then, if I stop working, how will we manage financially?
The tears began to flow. The last few months had been a nightmare and I was drained from it all. When I came home from work, I was completely exhausted, lacking the strength to even make supper. After a trip to the supermarket, I would just want to climb into bed and forget about the world. Instead, I'd stuff myself with junk food, deluding myself into thinking that it would give me the energy to put the groceries away. Overcome with embarrassment at my sudden show of emotion, I smiled wanly as I said, "I'm probably the only idiot to burst into tears in your office."
"Actually," the doctor continued, still smiling (I couldn't help but wonder if it was pasted on), "most people have a total melt down. But look at the bright side. Now that we have a diagnosis, we can start treating you. That will slow down the rate of deterioration."
"What about my children?" I asked. "Should I tell them? And how do I tell them?" I couldn't bear the thought of causing my children pain.
From the doctor's smooth response, I could tell that this is a question that most patients ask. "Mark Twain wrote that the best way to stay out of trouble is to tell the truth. Of course you should tell them. Don't keep it a secret."
At those words, I recalled a visit that I made to an elderly friend of mine who lives on the other side of the city. After a few minutes of chitchat, her husband said, "Rachel, I think you should tell her what the doctor said."
Rachel smiled at me, but her eyes were liquid. "I'm in the first stages of Alzheimer's," she announced without emotion. Knowing how temporary our time together was, I became determined to visit her more often. And today, I treasure our time together, knowing that it will soon come to an end.
In the privacy of the stairwell, I phoned my husband. "I'm finished at the doctors." Pause. "He said it's Parkinson's. I knew he would, but I cried anyway."
I decided to walk home. I couldn't face getting on a bus, and besides, I thought, I might as well start following doctor's orders and get my first daily dose of exercise. During the forty-five minute walk home, I had an almost overwhelming desire to stop in at any one of the dozens of shops on the way to buy a creamy ice coffee – my favorite comfort food. But I didn't. Instead, I gave myself a virtual pat on the back. I was proud of being proactive in my battle to remain healthy.
I had plenty of time to think during the long walk home.. In my mind, I wrote a battle plan of how I would cope – or at least attempt to cope – with my new reality. One of the coping mechanisms that I came up with is what you are presently reading: rather than retreat into a shell of isolation, I would share my new reality with others, and through that sharing, I would give myself – and others – support.
But then I had a problem. On one hand, it is important for me to be upfront rather than expend energy that I don't have in trying to hide my Parkinson's. On the other hand, however, I didn't, and still don't, want to define myself by my disease, and certainly don't want people around the world to know me as Debbie Shapiro, "the lady with Parkinson's." Which is why I thought at first I would write this column under a pseudonym.
When I discussed this with the editor at Binah, her response was that she feels that by using my real name, I would be making a statement to other people with degenerative illnesses that there is no reason for them and their families to go through all the trouble it takes to keep their illness a secret.
I jokingly responded that perhaps my byline should be, "Debbie Shapiro, who is first a woman, and second a person with Parkinson's."
The editor thought that was a great idea, and, in a subsequent email wrote, "You are such a fun and inspiring person."
Hmmm… I was really beginning to enjoy this, and since I have always been the paragon of humility, and of course, us writers always love to inflate our word count (in addition to our ego), I responded in jest, "How about, 'By Debbie Shapiro, a fun and inspiring woman, and a great writer too, who just happens to have Parkinson's?"
She loved it.
I was shocked. But the truth is, that is who I am. I am me: a wife, mother, grandmother, writer, speaker, cholent maker, laundry sorter, and an amazingly funny clown (just ask my grandchildren). I can make up silly songs at the drop of a hat, and in three languages to bat (hmm... there I go again!). I juggle at least a dozen roles while attempting to keep my priorities straight and do the right thing at the right time.
And now, I have just been handed a new hat. It's not one that I would have ever chosen, but now that I have it, I will be wearing it constantly.
But I will not let it define me.
This is going to be a huge challenge.
Living with Parkinson's #4 - We All Need Support – and Understanding
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.
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."
- 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.
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!
By Debbie Shapiro, a fun and inspiring woman and a great writer too, who just happens to
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?"
"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 Parkings #5 I Can(e) Do IT
Byline: Debbie Shapiro, a fun and inspiring woman, and a great writer too, who just happens to have Parkinson's
I have always loved walking, especially in Yerushalayim. One of my greatest pleasures was to wake up very early on Shabbos morning, before the heat began to set in, and walk to the Kosel. During the week, whenever I felt a bit down, I used to take a break for an hour or two (or three, or four…) to explore my very special city. Each neighborhood is so unique, and for a history buff like myself, full of historical treasures. Even the names of the streets — Chessed L'Avraham, Shmuel Hanavi, Yechezkel, Ohel Yosef — awoke within me a feeling of awe, and the various neighborhoods — Bucharim, Meah Shearim, Shechunat Hateimanim – are a potpourri of distinctly Jewish flavors and smells.
Today, I still love walking through the streets of Yerushalayim; only now, my walk looks very different. That's because today I use a cane (Gulp! I said it. Don't I deserve kudos for being so brave – and honest?).
I had initially been prompted to see a neurologist — which had led to my Parkinson’s diagnosis — because of serious balance issues. Walking had become so difficult that I tried my hardest to avoid it whenever possible. And when I had no choice, I was so unsteady on my feet and afraid of falling that more often than not I could barely put one foot in front of the other.
At one point, I "just happened" to notice that not only did my gait become faster when I was pushing a stroller, I was also able to enjoy myself. That little bit of support was what I needed to be steady on my feet, and with that boost of confidence, I enjoyed walking.
That's why, a few weeks after being diagnosed with Parkinson's, my husband and I had the following conversation over supper:
Me: You know, perhaps we should consider adopting a baby. Babies are SO cute....
Him: (Quickly swallowing his toast as he tries not to choke and keep a straight face) Don't you think we're a little old for that?
Me: But if we had a baby, then I could push the carriage. And it's so much easier for me to walk when I push a baby carriage.
Him: Well you know, there really is another solution. It's called a….
Me: (with visions of a little old lady with her grey sheitel pulled back into a bun, stooped over her….) Don't say it. I can't stand the word. I will never, ever become a sweet little old lady, or even a cranky old lady, with a walker — UGH! I can't believe I actually said that word! And if I ever do have to use such a thing, chas v'shalom, it won't be until I'm at least 95! Only then, I will call it a runner, 'cause I'll run with it. (Deep breath. Wistful smile.) And besides, I really do like babies. And I'll look much younger pushing a baby carriage.
Him: (with a hint of a smile and a mischievous twinkle to his eyes) Actually, I wanted to suggest a cane.
Me: No way! Me? A cane? (Flush of anger.) I'll only get one if you get one. Then we can fence together. Touché! (I wield my soup spoon as an impromptu sword.)
Actually, the idea of using a stroller instead of walker is not so far-fetched. Here in Jerusalem it's common for older women to push empty strollers to steady themselves. But I just can't see myself doing that, unless, of course, I were to place a large teddy bear inside – then I could laugh at all the reactions I'd get. (That's my wicked side coming out. And besides, we’ve married off all the kids, so who cares what the neighbors say….)
A few weeks after my husband and I discussed the pros and cons of adopting a baby, I had an appointment in Yad Sarah, the national volunteer and medical supply organization, and decided to surreptitiously take a look at the different types of walk… — oh, excuse me, I meant runners — available, "just in case I should ever change my mind." I studied the various models, but although some of them were really practical, with built-in chairs and baskets for holding groceries, none of them had the "look" I wanted: bright red, shaped like a race car, with a huge fog horn attached to the front, or at the very least, something disguised to look like a shopping cart. I didn't even bother looking at the canes.
The following day I had an appointment with the physiotherapist. She told me that it was important for me to walk as much as possible, and encouraged me to go for long morning walks. I countered that although I have no difficulty walking in the house, outside was another story. The sidewalks are uneven; and for some reason that I have yet to understand, people often park their cars or motorcycles on the sidewalk. And then there are the kids who cut in front of me with their bikes, and the mothers pushing strollers who bump into me – and all those things throw me off balance. A few days before, I had almost been run over by a Hatzolah motorcycle. I had been so intent on keeping my balance while crossing the street at a busy pedestrian crossing that I didn't hear the approaching siren and continued plodding forward. I don't know who was more startled – me or the Hatzolah medic.
The physiotherapist suggested that I purchase two hiking poles at a sports store — you know, the long poles with straps on the top, most often used by mountaineers wearing boots and carrying heavy backpacks for conquering the Alps — and use them to steady myself on my morning walks. I could not imagine myself trekking through the center of Yerushalayim with two hiking poles for support, so I decided to purchase a cane instead.
A few days after having made that brave decision, I organized to meet a friend at seven a.m. for a brisk early morning walk. As we circled the hilly neighborhoods of Ezras Torah and Kiryat Sanz, I kept on thinking how wonderful it was that now, with the support of my trusty cane, I could concentrate on quickening my pace rather than on remaining upright. But at the same time, there was this niggling feeling of embarrassment. How could I be using a cane IN PUBLIC?
After all, I certainly don't look disabled, and with the little bit of extra support that the cane gives me, my gait was completely normal. When I mentioned my embarrassment to my walking partner, she retorted, "Halavai that everyone would be so smart." She then proceeded to tell me about a relative of hers with Parkinson's. Despite having had several painful falls, she is too embarrassed to be seen outside using a cane. So instead, she avoids walking whenever possible – which means that in in trying not to look like an invalid, she has really become one.
When people point to my cane and ask, "Hey, what's this?" I respond that I need it to keep my balance and prevent myself from falling. Falls are dangerous, especially as we get older. I think a cane is preferable to a cast, and besides, more often than not, many people with casts also need a cane, or crutches, or even (gulp) a walker. And then, of course, canes really are a lot of fun. I use my cane as a prop (pun intended) to perform fun dances with the grandchildren (anyone reading this ever heard of Jiminy Cricket?), to press the stop button on the bus without having to standing up, and, most important of all, to once again enjoy exploring the streets of Yerushalayim.
Oh, and I almost forgot! Canes really do make great make-believe swords. Touché
Living With Parkinson’s #6 Bringing the Goat In
Debbie Shapiro, a fun and inspiring woman (and a great writer, too) who just happens to have Parkinson's.
Hashem really does work in amazing ways, and although we sometimes tend to forget it, He really, truly knows what He is doing. Okay, I know this is no chiddush, at least not for Binah readers, but there are times when something happens that brings this idea home.
This year, my son with his amazing wife and beautiful (pooh, pooh) family invited my husband and I for the entire Pesach. On one hand, with so much on my plate and limited energy, the idea of not turning over my kitchen for Yom Tov (and no matter how organized I might be, those 36 hours when everything is topsy-turvy are always much more exhausting than I could ever imagine!) really sounded enticing. Yet, there's something incredibly uplifting about making Pesach. At the end of all that hard work, we really feel as though we are LIVING the exodus.
Everything is so sparkling clean, and the Pesach kitchen is just, well, so Yomtovdig.
There's nothing like sitting around the table on Chol Hamoed cracking nuts while cracking up with the grandchildren. And of course, what’s Pesach without my special Pesach kugels or the beet preserves that I make each year from a recipe that was handed down through the generations in my mother’s family.
I vacillated between the two options, until finally, at the urging of our children, I decided that this year we really would go away for the entire Pesach.
It was a very good decision.
I'm sure you are all aware of the villager who went to his Rebbe complaining about the crowded conditions in his house. The Rebbe instructed him to bring various animals into his home. A few weeks later, when the Rebbe told him to send the animals away, he suddenly realized that his home was actually spacious. Well, that's how I feel right now. No, my home has always been more than adequate, but if I ever felt overwhelmed from dealing with Parkinson's, now that the proverbial goat has been brought into my home in the form of a different medical crisis, I realize that everything is relative, including health challenges.
Right now, as I write these words, I'm stuck in bed with cellulitis and multiple blood clots in both legs. This is after spending a total of 10 days in the hospital! Less than a month ago I had found it challenging that the balance issues associated with Parkinson's was making my walking difficult. Now, however, it is no longer difficult; it is downright impossible.
I can barely hobble to the bathroom.
Exercise, especially dancing, is out of the question.
My home has been turned into a miniature hospital, with intravenous antibiotics and an entire staff of nurses and modern day blood suckers (you know, the fellow guys who stick that needle into the arm to draw blood) to take care of me. And my poor husband, who faints at just the thought of blood and becomes nauseous from the smell of antiseptic, has taken on the role of an amateur nurse replete with the sterile pads and syringes necessary to hook me up to the intravenous antibiotic drip several times a day.
By the time you read this, Pesach will be long gone, and hopefully this whole painful nightmare will have become nothing more than a vague memory, but for me, technically at least, it is presently the day before bedikas chametz. A few minutes ago I looked out the window to the very large parking lot and adjacent playground underneath my apartment. Surrounded by four large buildings, each with over 80 families, the area is always brimming with life. Today, however, there are even more people than usual, and they all seem to be in a mad rush, somewhat like a film in fast motion. While the world is hectically racing against the clock, trying to somehow complete the endless number of things that absolutely must get done before the bedikas chametz deadline, I am relaxing in bed, reading books, or, when I have the energy to sit up, writing articles and responding to emails.
The crazy thing is that I actually miss being part of the Erev Pesach race. I have a deep desire to scrub the kitchen sink and start cooking! And to add insult to injury, this morning I received an email from a friend saying that knowing me, my entire Yom Tov is most probably in the freezer and I'm sitting on the sofa, relaxing with the Binah. Hah!
My head is foggy from the combination of pain, pain killers and massive antibiotics. This is definitely NOT how I envisioned spending Erev Yom Tov. I keep on reminding myself that if, despite my doing whatever is necessary to try and make the situation better, this is the way it is, then this is the what Hashem wants for me, and it’s obviously the best thing for me. And of course what better way to remind myself of that truth than by writing an article about it. Hopefully, some of my words of bitachon will actually rub off on me!
* * *
One of the great things about writing is that you can put an article aside for a few days and then continue at a later date, which is exactly what I’m doing now. So although you’re most probably busy with the blintzes and cheesecakes, I’m still finishing up the last of my Pesach laundry and sending grandchildren to the stores to restock my pantry. And yes, I am still spending most of my time either sitting or in bed, with my legs elevated, trying to curb my desire to get up and DO something.
Pesach was wonderful, although very different from what I had expected. Our son and daughter-in-law were (and still are!) the greatest. They treated my husband and I like royalty. During the eight days of Yom Tov, my every need was taken care of, so all I had to do was lounge on the sofa and enjoy being part of a busy and noisy household. And since my daughter-in-law had arranged for us to to stay in a neighbor’s empty apartment, when things got to hectic for me, I could just close the door and savor the quiet.
These last few weeks have been an incredible learning experience. One of the first things I am discovering is that when you are not feeling well, you need to look as though you are very ill, at least when you go to the doctor, otherwise you will not be taken seriously. The morning after I returned home from the hospital, a visiting nurse came to my house to assess if I was eligible for home care. After speaking with me for half an hour, she looked me straight in the eye and said, “You’re problem is that you look too healthy. You’re sitting on the sofa, dressed nicely and smiling brightly while telling me that the pain is so intense that you can’t put your leg down. If I hadn’t examined the leg and read your discharge papers, I would have never guessed that anything’s the matter with you. You have to learn to moan a little.”
Talk about challenges (sob, sob)!
The other thing that I’ve been reminded about from this entire experience is how quickly things can change. One morning, I was literally dancing and feeling on top of the world, and had the next three weeks all planned out in my head. That same night, I was so sick that I couldn’t even stand up without fainting, and, of course, by the following day all thought of those well-thought out plans had flown out the window. I had been feeling so smug about sticking to my exercise regime and was finally beginning to see the results of all my hard work – in addition to losing 10 pounds, my walking had actually improved, at least most of the time, and I was shaking less. But now I’m back to step one, or, to be more accurate, minus step one. Being immobile has exacerbated my Parkinson’s symptoms. Once again I am reminded that our duty is to do our utmost, yet understand that we are not responsible for the ultimate outcome.
So (kvetch) I’ll finish off this week’s column (moan) with another insight. Life is full of challenges (oy), so we should never feel smug about our accomplishments. One little naughty germ can topple a million dreams. But then again, when the going gets rough, and things seem down, there’s only one way to go – up (but don’t forget to kvetch a bit well you’re scaling the new heights!).
Or as my good friend Chavie always says, “Oy veys mir, NISHT.”
Living with Parkinson’s 7 - Tough Questions
By Debbie Shapiro, a fun and inspiring woman (and a great writer, too) who just happens to have Parkinson's.
A few weeks ago, I asked readers coping with a neurological disorder to share their challenges. The following letter I received brought me to tears.
I’m so grateful for your new series, though I’m sorry to hear about your situation. I have recently been diagnosed with the early stages of Alzheimer’s. Although it is very different from Parkinson’s, I think the one thing it has in common is the degenerative aspect. I am 63 years young and used to be a real go-getter. I’ve slowed down a lot and it has made me be so angry. It’s not anger at any particular person or Hashem, but feel more like I want to throw a temper tantrum at life in general. You seem so accepting of your diagnosis. Is that really the case? Are you never angry?
Also, I have begun to have so many fears about the future. I’m worried about being a burden on my family (much as I know they love me) and frankly, I’m not ready to die yet.
Unlike you, I’m too ashamed to write my name, but I allow you to print my letter as I really need your chizuk and look forward to hearing your response.
As I read your letter, I remembered something that happened to me over twenty years ago. I was lying in the recovery room following an emergency C-section when the nurse, accompanied by a doctor, informed me that my baby had died. The pain was overwhelming. I was drowning in a searing sense of loss, and it was compounded by the fact that, due to medical complications, this baby's death signaled the end of my child-bearing years. As the tears flowed, I had a strange sense of cognitive dissonance. I knew that my child had accomplished her tikkun, I knew that I had had the zechus of enabling her to do so, I knew that there was a reason that I had to go through all of this.
Yet this knowledge did not mitigate the pain. I was in emotional agony, grieving for both the loss of my baby and for the loss of my ability to have more children.
We grieve over a loss – any loss – including loss of our health and cognitive abilities. I feel pretentious even discussing what I'm going through in dealing with my Parkinson's, as Alzheimer's is a totally different ballgame. You ask if I was accepting of my diagnoses, and the answer is that it took a while until I was able to even say the P word! Even though it was clear to both my husband and I that I was having neurological difficulties that pointed to Parkinson's, I waited over six months until I was emotionally ready to make an appointment with a neurologist. During those months several times my husband gently suggested that I see a Parkinson's specialist, but each time I countered, "I will when I'm ready." Even though I intuitively knew what wrong, I couldn't face the finality of hearing the words, "You have Parkinson's."
I'll let you in on a little secret: there are aspects of Parkinson's that terrify me. Parkinson's is often associated with dementia. It can be a side effect of the pills that are given to lessen the dyskinesia, and dyskinesia is a side effect of the pills that are given to relieve the symptoms of Parkinson's (Chad Gadya, Chad Gadya…), while at other times it’s part of the disease itself. In addition, people with Parkinson's often lack facial expression, causing them to have a "blank look," which makes them appear to be lacking in intelligence.
However, since by nature I am very pragmatic, and at present I do not yet have to deal with these things, I try to focus on what I CAN do. On a ruchniyus level that means davening, strengthening my emunah and looking for ways to grow spiritually and emotionally through this nisayon, which includes using my experience as a chessed to help others going through a similar challenge. On a derech hatevah level, it means doing my hishtadlus to slow the disease's progression and maintain my health.
Sometimes, however, I am given no choice but to face the monster, and to put it mildly, it is not a pleasant experience. Last week, while waiting to see a doctor (where else?), I got into a conversation with a woman whose husband was in a wheel chair at the far end of the waiting room. His aide was there to take care of his every need, including giving him to drink and wiping away the spittle. I assumed that he had suffered a stroke.
The woman shared that her husband had Parkinson's and then proudly continued, "He founded the Israeli Parkinson's Foundation sixteen years ago." Although outwardly I continued smiling while holding up my end of the conversation, inside I was shaking. This man must have been a real powerhouse, yet today he can barely control his head. I couldn't help but ask myself, "Is this what I’m going to look like in another sixteen years?"
Somehow I found the courage to walk over to him to thank him for what he had done for the Israeli Parkinson's community, explaining that since I have Parkinson's, I am one of the beneficiaries of his chessed. He broke out in a lopsided grin and then, with slow and slurred speech, asked me what I'm doing for my PD. I responded that I'm taking minimal medication combined with lots of exercise . "That's great. You're doing the right thing," he said, but then added, "But in the end, nothing really helps."
When I came home, I was NOT in a good mood. I would probably call it anger, although I wasn't angry at anyone or anything (it’s a good thing I didn't break any dishes!) So yes, I guess you could say that I'm normal, at least most of the time, and normal people do get angry and upset.
It's frightening to think about the world continuing on without us there trying to control it, but that is reality. I have so much more that I want to accomplish, so much more living to do, so, in a way, knowing that my time is limited (which, of course, it is for all of us, but we tend to forget that) impels me to try, despite the slowness and exhaustion, to grab more of those things that are important, as well as find a way to convey to my family the precious things that I want them to remember, including an ethical will and a family history. Being aware that I need to do this as the clock is running out (for all of us.) is a chessed, a bitter chessed, but still a chessed.
We don't understand why Hashem put us in This World, what we have to contribute, or what is our tikkun. But what we do know is that the things we have to go through, however difficult they may be, are the tools that enable us to complete our task and accomplish our tikkun.
But then again, there is a huge gap, for me, at least, between understanding that this is darchei Hashem and bringing that realization to an emotional level, which, I would imagine, is our main avodah at this point.
B'hatzlachah and a refuah sheleimah b'toch kol cholei Am Yisrael,
Living With Parkinson's # 8 Lady, it's All in Your Head
by Debbie Shapiro, a fun and inspiring woman (and a great writer, too) who just happens to have Parkinson's.
Am I the only person who needs to be validated, to have someone tell me that what I’m experiencing is real, and NOT the result of an overactive imagination? A couple of weeks ago I wrote that I had been hospitalized with cellulitis and blood clots in my legs, and although I’m definitely on the mend and hope to be up and dancing in the very near future, at present I’m still spending a large portion of the day in bed with my feet elevated. And yes, I know this sounds crazy, but yesterday, when the doctor told me, “Cellulitis combined with blood clots is EXTREMELY painful,” I was relieved that what I'm feeling is normal, and that no, I’m not a hypochondriac (at least not most of the time).
Since Parkinson’s is literally is “in the head ,” when I am feeling good, and my body works the way it’s supposed to, I can’t help but ask myself if the original diagnosis was a huge mistake, and that I am perfectly healthy (or at least as perfectly one can be at my age), albeit a bit of a kvetch. And sometimes, when I’m shaking or having difficulty keeping my balance, I wonder if these symptoms are psychosomatic. After all, during dance classes, when I’m fully focused on following the instructor and keeping up with the beat, balance is not an issue, and my short, choppy steps disappear. And walking down the street, when I sing under my breath, “Big step, big step, right, left,” my steps become bigger and faster.
Shortly after my diagnosis I volunteered to take part in a research study funded by the Michael J. Fox Foundation at Ichalov Hospital in Tel Aviv. Mr. Fox is a famous actor (who I had never heard of prior to my Parkinson’s diagnosis) who developed Parkinson’s at age thirty. He established a foundation focusing on research to stop the disease’s progression, as well as vaccinations to prevent it in people with an elevated chance of developing it. I feel that if I can do something to advance research without causing myself harm, then this is a chessed that I can do to benefit others (and hopefully myself, as well).
My part of the research project consisted of spending a morning with a Parkinson’s specialist to assess the impact the disease was having on my day-to-day functioning, followed by a DAT scan, a very expensive scan that measures the amount of dopamine – that’s the neurotransmitter that is destroyed with in Parkinson’s – in the brain. Several months later, I met with the head of the research project, a world-renowned neurologist specializing in Parkinson’s and other movement disorders.
After about a quarter of an hour discussing my symptoms and the proactive steps I was taking to maintain my health, he said, “I think the doctor who made the original diagnosis of Parkinson’s was mistaken. You don't seem to have any of the symptoms of Parkinson's."
I felt as though the rug had been pulled out from under me. Were the difficulties I’m having with walking and keeping my balance nothing more than a figment of imagination? And what about the tremors that overtake me when I'm trying to rest? Was it nothing but a result of my belief that I have Parkinson's?
“What did the scan show?" I asked.
He hadn’t looked at it yet; his comment was made solely on clinical observation. But then, after looking at the results, he informed me that the scan was consistent with Parkinson’s, "So yes, you really do have the disease.”
I didn’t know whether to laugh or cry! I felt validated – yes, it’s true. I am not imaging all these crazy symptoms! But to tell you the truth, I really would have preferred to be shown as a fool. However, his words reminded me that I am just at the start of my Parkinson’s journey and that as degeneration progresses, and more dopamine is destroyed, the path will become more rocky. I just hope that by the time the going gets really rough, a cure will be discovered (which, of course, is the reason I joined the research study), and if not, that I will have the courage to face the challenges head on, with simchah and emunah.
Once the doctor was convinced that I was not a hypochondriac, I shared with him that my children had pointed out to me that my voice had become softer and the pitch lower (no more screaming, at least most of the time!). Yet, when I really focus on speaking loud, for example, when delivering a lecture, I am able to speak loudly and clearly. The doctor suggested speech therapy. I asked him what he thought about my joining a choir instead. He thought for a few moments, and then, with a big smile, told me that it was probably a very good choice. It certainly sounds like a lot more fun!
As part of my proactive approach to dealing with Parkinson's, I try to keep abreast of the
many different research projects taking place around the world. Among the many things that I've learned is that not only is exercising important in treating Parkinson's (which I’m sure I have mentioned on the odd occasion!) — something which was not known a decade ago, by the way — but according to the Movement Disorder specialist at Ichalov, it is even more important than medicine for treating the disease.
I’ve also discovered that when it comes to improving balance, there’s nothing like Tai Chi, and Baruch Hashem I was able to find an appropriate class. In one study, a group of patients with balance issues were divided into two groups. One group received physical therapy, while the second group was given Tai Chi lessons. The Tai Chi group had 80% less falls.
Studies have also shown that both cinnamon and green tea have a positive effect on Parkinson's, so I'm drinking lots of green tea with cinnamon! And then there’s Dr Greg Willis of Australia, who is using light therapy combined with minimal medication to treat Parkinson's, with excellent results, and is presently doing clinical trials using minimal dosages of dopamine delivered via the optical nerve straight to the part of the brain affected by Parkinson's. I am presently in touch with Dr. Willis and am working on arranging to receive the therapy in Israel.
There’s also been a lot of research about the importance of fun in battling illness, although not specifically with Parkinson’s. Laughter really is the best medicine, which is the reason I participated in a local women's play that took place right after Purim. As the only actress over the age of 30, I was given all the "older" parts: a rabbi in a girls’ seminary, an elderly Shabbos hostess (who sang a solo about how girls are not what they used to be), a rebbetzin who delivers shiurim to newly married women, and (yes, I kid you not!) the yetzer hora, who is very old indeed!
But my claim to fame was when I went onstage as the rebbetzin, I promptly forgot all my lines (can I chalk that up to the Parkinson's?). So I adlibbed it, telling my “students,” "Ladies, I have something very important that I want to convey to you, but I have to make sure that I get it right, with all the details. Please excuse me while I get my notes." My notes, of course, was the script! Although my friends immediately saw through my ruse, most of the audience assumed these were my lines. And I had a really good laugh, which is the reason I joined the play to begin with.
Although I was exhausted that night, and lay in bed shaking like a leaf, it was worth every second of it. Sometimes, we just have to have a good time, even if we end up paying for it later.
Living With Parkinson's #9 To Tell or Not to Tell (Only Her Neurologist Knows For Sure…)
Writing this series has given me an opportunity to get to know, via email and phone calls, other women living with Parkinson's. I never cease to be amazed by these incredible nashim tzidkaniyos who continue to be positive and function as wives, mothers, and yes, even professionals, while coping with a debilitating medical challenge. I've also been exposed to outlooks and ways of coping that are very different from my own, yet totally legitimate, for just as Parkinson's manifests itself differently — for some, the first signs are tremors, for others, it's walking issues, or problems with balance, a dragging foot, or difficulty with fine motor tasks — each woman has her own unique way of dealing with the disease.
I'd like to share with you an exchange of emails and phone calls that I had with a lovely woman who decided to keep her diagnosis a secret. I am sharing this with you after receiving permission from this reader and minor changes were made to protect the writer's privacy:
Hi! I'm a young(ish) mother with early-onset Parkinson’s and am wondering if we could correspond. I haven't told anyone about this (even my children don't know) and it is sometimes very difficult not to talk about what I'm going through.
From a, baruch Hashem, coping (although a bit tired) mother
Dear Coping but Tired Mother,
It would be my absolute pleasure. I would also be interested in organizing a telephone support group.
Waiting to hear from you,
I would like to ask a few questions. How did your children react when you told them about your condition? I'm afraid that mine will become hysterical. And since none of my children are married — my oldest will be coming out of the freezer this summer while my second is graduating sem — I'm worried about shidduchim. Other than my husband and one or two other people, no one knows about my condition. I admire your incredible courage to put into words the emotions I go through, but at the same time I am worried that people will recognize me through your very moving description of your (our) condition.
A coping (although a bit tired) mother.
Following this above exchange of emails and a very meaningful telephone conversation where we both articulated our struggles, we continued corresponding. Although most of the subsequent emails were private, but I can share the following excerpt from a longer email she sent me:
I always feel strange when I hear people talking about people with Parkinson's saying things like, "Nebech her husband has Parkinson's," or "She's busy looking after her mother who's sick with severe arthritis AND Parkinson's." I just nod dumbly, not daring to say what I really think: "Hey, what's so nebech about it?" Parkinson's can, with Hashem's help, be managed and im yirtzeh Hashem, hopefully there soon will be a cure for it. It's not a tragedy, for heaven’s sake!" But I don't say it; I just feel uncomfortable. I sometimes think that if they would know my secret, they would jump a mile. After all, you never know, Parkinson's might be contagious....
About the same time as I received the above email, a different reader put me in touch with an Israeli woman, my age (we actually share the same birthday!) who just "happens" to live around the block. She was diagnosed nine years ago, at age 52. Since then, she's married off several children, will be marrying off a daughter before Sukkos, and has a high-school age daughter still living at home. She is very upfront about her condition; she informed her friends and family about it almost as soon as she was diagnosed and has educated her family about the many different symptoms. When I asked her if this impacted her children's shidduchim, the response was, "Shidduchim are in Hashem's hands, but baruch Hashem my children all found excellent spouses." She did point out, however, that when she started using a cane, her then twelve-year-old daughter was concerned about what her friends would say and was very upset.
A few days later I received a phone call from an amazing woman who, despite her illness, continues to teach half a day. As she explained to me, "At work, no one would dream of what I'm struggling with, of how I return home shaking with exhaustion, barely able to cope. Although my immediate family is aware that I have Parkinson's, I don't want people outside the family to know. I'm afraid that once people would find out, I'll lose my job."
As you can see from the above three women, there are many different ways of coping with a diagnosis, and all of them are perfectly fine. As for myself, although I had symptoms pointing to Parkinson's, it took me over six months before I was emotionally ready to see a doctor, but once I got over that initial hurdle, I was also ready to tell my family and close friends – although, to tell you the truth, I never considered going public about it. Originally, I planned to write these articles under a pseudonym, but changed my mind after one of the editors convinced me that the impact would be greater if I use my own name. And from the many letters that I have received, she was right. My favorite was from a woman whose thirty-year-old husband has Parkinson's (and yes, Parkinson's is not only for old people, although it is more common in older people – and I hope to write about that in a future article): "My husband never used to read Binah, but now, every Monday morning, he opens up to your article and feels validated and understood! I told my husband, 'You don't get it. She's a famous author, not just a random lady....'" If my not being a random lady will give chizuk to others, then I am grateful that I am using my real name. (When I showed the email to my husband, his response was, "I would never have just married some random lady," and that, of course, made me feel great!)
But having the world know definitely has its drawbacks. Sometimes, when I'm feeling absolutely wonderful, full of energy, with a youthful spring in my step, I'll meet an acquaintance and the first thing she'll say is, "Debbie," accompanied by a barely audible under-the-breath oy, "How are you? You're looking great. I would never know…amazing!" And the truth is, when I feel great — and since early-stage Parkinson's has very definite ups and downs, I do often feel perfectly (while, almost perfectly…) fine. I really don't appreciate people asking me how I'm managing, and of course it goes without saying that I never appreciate being the object of anyone's pity. I am managing perfectly fine, thank you (at least most of the time, and that is probably true for most of us), and when I'm not, I'll let someone know. I am not a martyr.
On the other hand, when I am struggling to balance two bags of vegetables while desperately attempting to fill another bag with onions, and someone who knows me offers to hold my groceries while I choose the onions, or when I get on a bus and an acquaintance takes my bus card and hands it to the driver so that I can quickly get a seat down before the bus starts to whiz around the corner, I am grateful that my condition is no secret.
So the question remains: Should a person disclose that he has a degenerative disease before the symptoms become obvious? I really don't know. I would imagine that whenever one chooses to makes such a revelation, the people we're close to will be shocked and upset. Coping but Tired Mother" wrote, "How did your children react when you told them about your condition? I'm afraid that mine will become hysterical." I totally related to that, as it was not easy for my immediate family to accept my diagnosis. One daughter cried for hours until eventually she came to accept the fact, but I imagine that would have happened no matter what stage the disclosure. And as for shidduchim, for me, at least, that is not a deterrent, as we are, baruch Hashem, well past that parashah.
However, as one woman with a different degenerative disease (who I "met" via email as a result of these articles) pointed out to me, "If Hashem wants to make a miracle, it usually comes when only a few people know." Although I have no doubt to the truth of that statement, I also know that as a result of my being open, many people are davening for my recovery. I am sure that that is having a powerful impact b'Shamayim, so thank you to all those who mention my name in their tefillos.
Living with Parkinson's #10 - Getting Rid of the Tight, Pointy Shoes
Living with Parkinson's #10 - Getting Rid of the Tight, Pointy Shoes
Okay, folks, I have some earth-shattering news to tell you. I know this will shock you, so please, if you are standing, sit down. I would hate for anyone to get hurt. Are you ready? Okay, so here goes: I am NOT courageous, I am NOT an amazing woman, and, (gulp) I am NOT a tzadekes.
Almost every day, and sometimes several times a day, I get a phone call from a stranger or am stopped on the street by an acquaintance who starts gushing about my articles in Binah. The conversation usually goes something like this, "Debbie, I loooove your writing. It's the first thing I turn to when I get the magazine and it gives me such chizuk." So far, so good. Actually, I am flattered to receive such positive feedback (after all, I DID tell you that I'm not a tzadekes!). But then, almost every time, the conversation continues, "I am amazed at your courage and at how you are so open about what you're going through. You're an incredible woman, a real tzadekes. I.…"
At that point, I feel like screaming, "HEY! Do you honestly think that I chose this? If I had been asked, I can assure you that I would have said, 'No way!' I am NOT courageous. I am simply dealing to the best of my ability with what Hashem gave me." And as for being open and honest about what I'm going through, I'll let you in on a little secret: I only write about universal things, those emotions that are common to people with Parkinson's or anyone facing a physical challenge. Most of us are human, (at least I hope so because if we’re not, well, the opposite of human is inhumane), and I can assure you that I have a long way to go to reach the lofty madreigah of tzadekes. I am still very much a work-in-progress, a real live human being who too often gets upset or even angry. On too many occasions I rush through my davening or bentching, and (gulp) I'll even finish all the ice cream when no one's looking. And on Yom Kippur, I need to klap "al cheit" just like everyone else, because just like all the other people in shul, I have what to do teshuvah for (and that is rather personal, so as curious as you might be, that will remain between me and my Maker).
I'm dealing with my Parkinson's in the same way that I deal with any new challenge: First I learn everything I can about whatever it is that I have to deal with, which, since I tend to analyze things rather than emotionalize them, is my way of coming to terms with and learning to accept the challenge. Empowered by my knowledge, I do whatever I can on a gashmiyus level to improve the situation. At the same time, I daven and try to improve myself spiritually so that I will become a kli worthy of a true yeshuah. Finally, I work on my emunah, on my confidence in the idea that if despite all my hishtadlus, things don't work out the way I had hoped they would, it's really okay, because there's Someone here in charge, and He certainly knows what is best for me, even if I don’t.
If, for example, I were to suffer from an ingrown toenail (which I don't), I would read anything I could on the underlying causes of ingrown toenails (IT for short), various methods to deal with IT, including researching possible cures, practical advice for coping with the symptoms, and measures to prevent IT from reoccurring. I would contact the Fictional Association of People with Ingrown Toenails (FAPIT for short) to hear what they suggest, as well as the Imaginary Foundation for Ingrown Toenail Research (IFITR) to read about the latest results of medical research. I would also try to find the nearest chapter of SSIT (Silent Sufferers of Ingrown Toenails, who thanks to their very popular support groups are no longer silent about their suffering) to connect with local PWITs (People With Ingrown Toenails) and see if there are any activities in my area that might educate me or provide me with skills to cope with ITs. And if I was really brave, I might even consider joining WAIT (Women Against Ingrown Toenails) to lobby for laws to be passed against the shoe manufacturers who produce shoes that cause ITs.
Then, when I would go to the podiatrist for treatment, I would be able to ask educated questions about how to care for my toes. And I would have sufficient knowledge to know that even if he doesn't mention it (and he probably won't, as there's only so much that a doctor, or podiatrist, can say in a fifteen-minute appointment) I would throw away all my tight, pointy shoes and make sure to cut my toenails properly.
On the ruchniyus side I would ask close friends and family to daven that my IT be miraculously cured. I would attend to shiurim to develop my emunah and bitachon so that I could accept the IT challenge in a way befitting a true bas Yisrael. And of course, I would turn to Hashem to ask Him for a refuah shleimah while trying to become the type of woman who deserves to be able to walk on two healthy IT-less feet.
And then, if, after doing everything possible to get rid of my IT, if it would be resistant to all treatment and become a permanent painful feature (known as a RITS, or Resistant Ingrown Toenail Syndrome), I would be content in knowing that had done my utmost to remain IT free, and that this is what Hashem has planned for me.
But not everyone deals with challenges in the same that that I do (and I'll admit, I am somewhat obsessive in my hishtadlus), and that's perfectly legitimate. Plenty of people prefer to blindly follow their doctor's advice without empowering themselves with the knowledge to ask educated questions. They need to understand, however, that they might inadvertently continue wearing tight, pointy shoes, never realizing that that was the underlying cause of their problem. As for being open about my condition, let's just say that I'm basically a coward who is in need of as much chizuk as she can get!
Here in Yerushalayim, and I have heard that it is the same in most other places, neurologist appointments are scheduled at three-month intervals. Between appointments, if I have any questions about symptoms (is this really normal?), there is no one to ask. And as for turning to one's general practitioner, most have very limited experience with Parkinson’s (I'm my doctor's only PD patient!).
So where do I turn when I have a question, be it about my symptoms or my medication? One amazing source of information is the PDF (Parkinson’s Disease Foundation) Hotline (phone: 800- 457-6676 email: firstname.lastname@example.org). Their team of information specialists answer questions about Parkinson's disease, symptoms, treatments, complementary and alternative therapies as well as provide information on the latest scientific studies. Personally, I was, and continue to be, impressed at how the information specialists at the PDF respond with a unique combination of empathy and professionalism. Each time I have called them, my inquiry was followed up with an email providing additional information, phone numbers and links of helpful resources in the community and, when applicable, an informational webinar providing in-depth information relating to my question.
And when you do call them, you have my permission to let them know that you got their number from the nudnik in Jerusalem.
Well, at least I'm an educated nudnik.
Living With Parkinson's #11 -- I'll Win the Nobel Prize!
Living With Parkinson's # 12 -Rising to the Challenge
Living With Parkinson's #11 -- I'll Win the Nobel Prize!
Byline: Debbie Shapiro, a fun and inspiring woman (and a great writer, too) who just happens to have Parkinson's.
A few nights ago, I attended a lecture sponsored by the Israeli Parkinson Association on the history of pharmaceutical treatment for Parkinson's and the various medicines presently under research. The speaker, Dr. David Arkadir, a neurologist at Hadassah who specializes in movement disorders (that's medical jargon for the guys who treat Parkinson's and similar neurological disorders) managed to make what I had assumed would be a boring lecture into something absolutely fascinating.
Dr. Arkadir pointed out that although in the early 1950s scientists already knew that dopamine existed within the brain as well as in organs other than the brain, no one thought it had any real function. They assumed that it was simply "there," a little something or another that permeated our brain and organs, and yet had no use whatsoever, a decorative thingy placed there by our Creator to stump scientists and provide them with an opportunity to do research.
Then, in the late 50s, a researcher somehow succeeded in removing dopamine from brains of rabbits, and much to his amazement, all the animals developed a form of Parkinson's. At that point, the scientific community realized that dopamine actually did something, and it wasn't long until they came to the conclusion that a lack of dopamine caused Parkinson's. Now the challenge was to find a way to put dopamine back into the brain.
It took almost another decade until researchers gave levodopa to humans. Levodopa is the precursor of dopamine (which means that the body uses it to manufacture dopamine), and is able to penetrate the blood brain barrier, a wondrous protective wall surrounding our brain that prevents contaminations in the blood from entering our main nerve center! Although levodopa was touted as a "wonder drug" that could completely relieve all the symptoms of Parkinson's with negligible side effects, the scientific community realized from the beginning that it could also cause serious side effects. Yet even today, fifty years since its discovery, levodopa remains the stellar treatment for Parkinson's.
Toward the end of the lecture, someone asked, "Is there anything out there that has been proven to slow down the deterioration associated with Parkinson's?" And I know this will not come as a shock to you, at least if you've been reading this column, but Dr. Arkadir's response was, "exercise" (now wasn't that a real chiddush?). Then he said something that for me was an epiphany, one of those "ah hah!" moments. Researchers believe that the reason exercise is so beneficial for Parkinson's is that exercise causes our bodies to produce a chemical called serotonin, which somehow (and don't ask me how. I'm a layman, not a doctor) enhances dopamine levels in the brain. So far, so good. Then he mentioned as an aside that scientists believe that one of the reasons people like chocolate is that it somehow causes a surge of serotonin in the brain, which in turn provides us with a surge of pleasure.
Well, I could certainly relate to this. Chocolate! Pleasure! The two certainly go together, no matter what the weather (oh, come on, Debbie, stop it already. This is a serious article). Suddenly it dawned on me: if increasing the serotonin in our brain can help control Parkinson's, and scientists believe that chocolate does just that, then it would stand to reason that (please applaud me when I win the Nobel prize! This is incredibly ingenious!) CHOCOLATE CAN CURE PARKINSON'S!
Can you imagine? I will be able to spend my days relaxing on the recliner that I will buy for the sake of my health (now that is what we call real mesirus nefesh) while eating bar after bar of fine Swiss chocolate (if I'm going to do it, I'll definitely do it right). I will cancel all my exercise classes and buy colorful tent dresses to hide my bulging waist line. Who cares? I wouldn't mind being fat (or, perhaps, to be more exact, fatter), as long as I'm healthy. Isn't that what really counts?
But my bubble was quickly burst after I emailed an abstract of my theory to the doctor. Dr. Arkadir's response: There are theories that chocolate increases serotonin production, but this form of serotonin is a different compound than the one involved in Parkinson's disease. So, as far as I know chocolate is not suggested as a cure for Parkinson's. Still, it tastes good.... At least he agrees with me on one point!
Another interesting thing that happened at the lecture was that Dr. Arkadir, a prominent movement disorder specialist, brought his mother to hear him speak, and he even introduced her to the audience! During the lecture, I surreptitiously turned around to glace at her several, and I could literally see her kvelling with nachas. At the conclusion of the lecture, I went over to her to compliment her on raising such a wonderful son and then raised her kvelling level by liberally praising him for everything he does for the Parkinson's community. Her response floored me: "I get on the 4:20 a.m. bus to the Kotel every morning. At the Kotel, I daven for his success, and that all his patients, together with all of Klal Yisrael, have a refuah shleimah." With a mother like that, it's not surprising that the doctor is so successful.
The main focus of Dr. Arkadir’s lecture was an overview of the new Parkinson's drugs either presently on the market, or in the process of receiving FDA approval. They are all based on levodopa and include patches, large capsules containing numerous mini-capsules, accordion-shaped pills, and even a pump, similar to an insulin pump, which slowly delivers the medicine straight to the blood stream. These products were created to solve the problems that occurs when the effect of the levodopa wears off, leaving the PwP (that's the standard acronym for Person with Parkinson's) not able to function until he receives his next "fix." And yes, I am using the word "fix" davka, despite its association with drug addiction, because, as one woman with Parkinson's so eloquently described it: "When the medicine wears off, I feel like a junkie must feel, all shaky and unable to cope, just waiting for the time that I can get my next fix."
People often find it difficult to understand that PwP have on and off times, and that their "off" times are often caused by the effect of the medicine wearing off. A PwP may be functioning perfectly normally, and then, suddenly, CRASH, he can barely place one foot in front of the other or even lift his fork up to his mouth. The experience of being off is one of a thick, heavy, exhaustion, a palpable darkness. Very often, people react with comments such as, "Oh, come on, you're really okay," or, "Just hold out another five minutes, then you can rest." But the person isn't okay and can't continue functioning for even another five seconds, let alone five minutes.
Just to end this article on a positive note, an acquaintance of my husband's who has been following this series in the Binah sent my husband an email stating that every Wednesday morning he drives into our area of the city to do his family's shopping at one of the major supermarkets, and that he would be more than happy to do ours at the same time. He didn't even give us a chance to say no; the following Tuesday night I received an email asking me to please send my order, and that delivery should be somewhere between 11 to noon! Mi k’amcha Yisrael!
And in case you’re interested: yes, the doctor reviewed this article and gave his haskama.
Living With Parkinson's # 12 -Rising to the Challenge
Byline: Debbie Shapiro
Once a week, on Thursday mornings, I climb the hill to a nearby women's gym to do aerobic dancing along with dozens of other women, most in the early twenties. Although I modify the teacher's instructions to suit my own fitness level, which means that while the other women jump high in the air, or spin around the room, I step spritely in place, I still manage to work up a good sweat. I don’t particularly care for the music they have accompanying the class, but the fast tempo of it impels me to move fast, which is just what the doctor ordered.
One of the most amazing things about Parkinson's is that since it's really all in the head (as in it is neurological, not psychological), although walking is difficult, dancing is a pleasure! (There are people with Parkinson's who cannot walk, yet, because a different part of the brain is responsible for these tasks, can play tennis, or ice hockey or dance unassisted!). The instructor, a sweet young girl with hair pulled back into a curly pony tail, often throws me a huge smile and gives me the thumbs up (that's E for Effort).
Sometimes, during the few seconds that we have to rehydrate ourselves between dances, a few of the women in class tell me how much they admire me for sticking with it, and for trying (with emphasis on the word "trying") to keep up with the teacher. One women breathlessly asked me if I was a certain well-known rebbetzin, so even though I have no doubt that I look ridiculous (I mean, really, Debbie, can't you act your own age?) at least it’s a respectful-looking ridiculous!
Just to give you an idea how incredibly young most of my fellow-dancers are, a couple of weeks ago, I stood waiting for the elevator together with five absolutely adorable women from the class, each pushing a stroller containing an equally adorable baby. They were having a very animated discussion on (I kid you not) how incredibly old their husbands had become (it took a long time for the elevator to come as the women were so involved in their conversation it never occurred to them to press the button). "I can't believe it," said one. "My husband turned twenty-six last week!"
Amidst gasps of amazement at the passing of time, another continued, "And mine just turned twenty-five. He's so, so ooooold!" The conversation continued in a similar vein until I finally pointed out that the elevator will never arrive if no one presses the button. Then, when it did arrive five seconds later, I quickly slipped into the open door while the others continued their discussion, this time about various strategies to fit five women with five strollers into a two by four elevator. As the door was closing (with only me in it!), I turned to the women and said, "Let me give you my blessings that someday you be married to old men!"
Yes, I realize that the above paragraph really has nothing to do with Parkinson's, but I had to share it with you because (a) it really is a very funny story, (b) it demonstrates the age difference between me and the other women in the class and (c) I secretly hope that that the women who were standing there will read this and, much to their horror, discover that the decrepit old lady who can barely keep up with the class is really a famous woman in disguise (yes, this last sentence contains plenty of literary license).
One morning, after a particularly grueling hour trying to keep up with the young folks, I decided to relax in the lounge before returning home. As I stood at the water cooler, waiting for my disposable cup to finish filling, I kvetched to a grandmotherly looking woman, who, instead of jumping around like a meshugenah, was sanely sitting on the couch, knitting something, most probably baby booties. “Oy, ein li koach,” I said. ”Oy, I have no more strength.”
The woman stopped her knitting for a moment, looked me straight in the eye and retorted, “Al tagidi she’ein lach koach. Tagidi, 'Hashem, ten li koach.’" “Don't say that you don’t have any koach. Instead, say, ‘Hashem, give me koach.’”
As I dragged myself home, barely able to put one foot in front of the other, I couldn't stop thinking about the woman’s words. It suddenly dawned on me that I was so focused on my doing whatever is in my power to overcome my physical challenge, I was forgetting Who gave it to me, and that together with the physical aspects of the challenge is the spiritual hard work of using this nisayon as a tool to grow in my connection to Him.
But the problem is that I am – well, um, (blush, blush) lazy. I am not one of those amazing women who spend their Shabbos afternoons learning the parashah with several different meforshim or fervently reciting Tehillim. I need a shiur to inspire me, and that, too, has become a problem. I have what's called a resting tremor, which means that when I am relaxed, my arm is not. And since I am afraid that the other women at the shiur will stare at me, I end up concentrating on trying to stop the shaking, usually without success. Then, to top things off, when I sit for any length of time, I often feel like a kid with ADHD – it's as if there's an electric current running inside my limbs and I need to tap my feet and move my hands and arms around (this is aptly called restless arm/leg syndrome, and is typical of Parkinson's disease). Since I really can't give into that urge, a lot of my energy goes into keeping myself still, which, of course, takes away from my level of concentration.
But several months ago I was asked to speak to a group of Bais Yaakov girls on a tour of Eretz Yisrael. In preparation, I downloaded shiurim to my MP3 player and then listened to them at every opportunity – while walking to the gym, sitting on a bus, waiting for doctor, washing dishes, folding laundry and dusting the furniture. On Friday night, instead of immersing myself in the latest Binah, I reviewed the parashah with Rashi. Shabbos morning, my questions on the sedrah at the seudah were the catalyst for an interesting family discussion. That entire week I was thinking over the ideas I had heard in the shiurim while deciding what concept I wanted to convey to these girls and how I would use inyanim from the parashah to get my point across. Through formulating my own thoughts, the ideas became very concrete to me, and because of that, I couldn't be complacent with my level of spiritual growth. Suddenly, I found myself davening with just a bit more kavanah and being more careful about many of the things I too often do by rote. Maybe I am onto something!
Like most of us, I need something to impel me to grow, be it writing for Binah or giving a shiur. So thank you for allowing me to use these pages to formulate my thoughts. Who knows, perhaps with all this chizuk I am getting through writing to you, I might eventually transform myself into someone actually worthy of sharing my thoughts with the chashuve women reading the magazine!
LIVING WITH PARKINSON'S # 13 -- SWITCH
Last week, I attended a webinar on Parkinson's, where I heard something that totally shocked me. A research project following a group of people with Parkinson's over a period of several years discovered a direct link between people’s sense of loneliness and their rate of deterioration. As one doctor on the panel explained, "We used to think that support groups and social activities were nice additions. Now we realize that they are crucial to the health of the person with Parkinson's." In other words, it's healthy to have friends.
've always been a people person. I take tremendous pleasure in connecting with other women, sharing our lives and discovering common interests. But now, more often than not, I just want to crawl into a ball and hide under the covers. I want to be alone. That's because I'm always so, so tired. It's an overwhelming deep-in-the-bone exhaustion that leaves me gasping. But I push myself. I know how important it is to remain active and engaged in the world, so I get out and do things. And when I'm out doing things, be it dancing, sitting in the park or pumping the noodle at water aerobics, despite this pervading sense of exhaustion, I am still (usually) able function normally, and even have a good time.
But then I return home and collapse. Literally.
And do you know what happens when the woman of the house collapses, at least this particular woman? Well, let's just say that my household is not running the way I would like it to. More often than not, I'm too tired to make myself something healthy for lunch, so I just grab some crackers or binge on ice cream. As for the floors, please don't look. The dishes? Well, that's become my husband's job.
For someone like me who was always particular to run a clean, well-functioning home, this is downright depressing. And I definitely don't want to fall down THAT slippery, slimy slope. Although I am by nature very positive and upbeat, I now have to work really hard at maintaining that status quo. I'm not alone. According to the medical resources that I've read, people with Parkinson's tend to become depressed. It's a result of the chemical changes in the brain together with the challenge of coping with a progressively debilitating disease.
This does not at all surprise me. It's been my personal experience that physical health has a huge impact on mental health. The first clue that I'm coming down with the flu is an all-pervading sense of, "Life is too much for me. I can't cope."
That's how I'm feeling right now. Down. Way, way down. I keep on reminding myself that it's not ME, that what I'm feeling is nothing more than a physical reaction, and that I have every reason in the world to get up and dance. And yes, I actually force myself to get up and dance, and when I do, the endorphins kick in and I feel great. But then, I stop, and once again, I feel miserable. Tired; no, exhausted. So I push myself, hard, to do something, anything, to remain active.
Sometimes I succeed, and sometimes, well, let's just say that I'm human, and I don’t.
There's a problem with writing about being depressed. Just thinking about it makes me feel as though I am standing on the brink of a huge vacuum with the capacity to suck me into deep emptiness. And I don't want to go there. It's too scary. The one tool that I use to climb out of depression is to do a major SWITCH and talk/think about other things, which is what I am about to do now (isn't this an amazing way to change a topic?).
Lots of Binah readers have contacted me with different eitzos about alternative treatments for my Parkinson's. First of all, I'd like to say that I really do appreciate each and every phone call and email. It means so much to me that there are so many wonderful people out there who are actually concerned enough to make effort to get in touch with me. And I really do check them all out. However, I must admit that there are times that the advice is comical, like the time a woman contacted me in great excitement to tell me about her naturopath practitioner. When she asked the practitioner if he could help me, he told her that he has had such tremendous success in helping Parkinson's patients that their blood tests for Parkinson's actually return to normal. I thought that was really amazing, especially since there is no blood test for Parkinson's.
One of the biggest difficulties in figuring out if something really is effective, be it conventional medicine or alternative treatments, is something called the placebo effect. A few weeks ago we hosted a very sweet seminary girl whose father works for the FDA (Federal Drug Administration – that's the government body in charge of testing new drugs and medical procedures for both safety and efficacy before giving their approval for use in the United States).
Somehow we got into a discussion about what the FDA requires of a pharmaceutical company to attain their approval on a new drug, which is a prerequisite to its becoming legal in the United States. To prove a drug's efficiency, it must first go through a double blind study. That means that some of the participants are treated with the real drug while the remainder are treated with a placebo. Neither the participants nor doctors know who is receiving what. Interestingly, a substantial percentage of participants receiving the placebo will see an improvement in their condition (and some will even experience the negative side effects associated with the medication!).
Considering everything we know about the mind-body connection, we would expect some subjective improvement (Hey, my arms don't ache the way they used to!). However, objective improvements, such as the measurable reduction of a tumor, or lowering of cholesterol, also occur. Since all this miraculous improvement is the result of nothing more than a sugar pill, it makes it very difficult to sift viable claims from hocus pocus.
But the truth is, this really shouldn't surprise us. We know that the One who makes oil burn can also make vinegar burn, but that first we need a make a kli to contain the brachah, and that kli can be a sugar pill or expensive medication! Or as I've heard so many times, if you believe something will work, then it has a better chance of being effective.
That is one of the reasons I decided to try acupuncture. According to one of the panelists on the webinar that I attended from the Michael J. Fox Foundation (every three weeks they hold an excellent, informative, and most important, free, webinar for both professionals and laymen) at least one double blind scientifically controlled study showed acupuncture to have a positive short term effect on Parkinson's symptoms. Then, when a person I trust raved to me about her practitioner, I decided to give it a try.
So that's how this somewhat normal (well, I guess that depends on who you ask!) and usually sane woman ended up lying on a hard, narrow table, with pins in my fingers and pins in my toes (and yes, there was also music coming out of the walls). After the practitioner finished positioning all the tiny needles, she told me to just relax and enjoy myself (Huh? Have you ever seen a pin cushion relax?) before leaving the room, closing the door tightly behind her. I was much too petrified to move, let alone enjoy anything. As I lay there, staring at the ceiling, it felt as though electric currents were racing through my body – as if I was going into super-Parkinson's mode, and it was not a very comfortable feeling. Twenty minutes later, when the practitioner returned, I asked her if this was to be expected. She responded that although everyone reacts differently, the needles stimulate the magnetic pulses within my body, so it would make sense for me to react that way. "But it will take another two sessions until I'll know if you're a candidate for acupuncture, if it can help you or not."
I'll let you know if this really works, but one thing I do know is that it is NOT beneficial for our bank account, and that really is depressing. Oh no, here we go again…SWITCH!
Living With Parkinson's #14 Final Pearls of Wisdom
Living With Parkinson's #14 Final Pearls of Wisdom
By Debbie Shapiro, a fun and inspiring woman (and a great writer too) who just happens to have Parkinson's.
CRASH! I stared in horror at my kitchen: shattered glass was everywhere. I was just about to finish putting our weekly grocery order away when I stood on tippy toes and to reach up to open the door of my upper cabinets. My elbow bumped into the large glass container that holds our pasta, sending it flying off the counter with an enormous bang. Glass shards were stuck to the goo that covered my countertops and perched on tiny pieces of tomato and toast crumbs, the remains of breakfast still clinging to the dishes piled on the table.
There were long strands of uncooked spaghetti floating in the murky water that filled my chulent pot (and it was already Wednesday!). And my kitchen floor, which until a minute ago was only littered with leftovers of suppers, lunches and breakfasts, was now covered with glass shards intermingling with long, thin strands of raw spaghetti.
This was the last straw. "That's it," I yelled into the empty kitchen, trying to hold back my tears of frustration and exhaustion. I marched into my husband's study. "You can make your own lunch. I can't cope with this. I'm going to sleep. Goodnight" I slammed the door behind me, ran to the kitchen to quickly down a sandwich and threw myself into my bed.
Within minutes, I was sound asleep.
When I woke up, I STILL couldn't deal with the kitchen. It was beyond disgusting, and there was only one person to blame – me. So instead, I read the Binah, ate some ice cream (isn't that a healthy supper?), and then left the house to go to our neighborhood Neshei event. "I'll deal with it tomorrow," I thought, hoping that "tomorrow" I would find the energy that I hadn't had, today, yesterday, the day before and, well, you get the picture.
On the walk home later that night, I kept on repeating under my breath, "I will remain calm. I will ignore the mess. I will not get upset. I will not feel worthless. I will survive this, and tomorrow, I will feel wonderful and have plenty of energy…" but to tell you the truth, I wasn't very convincing, even to myself.
I took a deep breath before entering the kitchen. If I couldn't conquer the kitchen, at least I'll conquer my own irritability. But the kitchen was immaculate! The dishes were washed, the counters were spotless, the table was cleared and the floor was shining!" Yes, I know it's a cliché, but it's the truth: I couldn't believe my eyes. Really.
"Who did all this?" I asked in amazement.
My husband had that cat-that-ate-the-canary look on his face. "It really wasn't a big deal. I just did it between doing other things."
Ah, yeah… Well, I can tell you that it WAS a big deal. In the many decades of our marriage, my husband has never, ever washed a floor. And as for countertops, he believes that the reason they exist is to provide a surface for piling things, and has yet to understand why I despise clutter. And yet, he had gone completely beyond himself to make me happy. Not because he thinks it's really important – he could care less about the mess, as long as there's food on the table – but because he understands how difficult it is for me; that I'm floundering; that what was once so easy, is not challenging, and that it's difficult for me to juggle all my medical appointments, keeping up my exercise routine, and running a household.
The following Shabbos, my husband and I went away to a small heimish hotel by the ocean. What bliss spending Friday afternoon sitting at the seaside, watching the waves crash with such intense vigor and then disappear into froth, changing, and yet constant. I need this, it's balm to my neshama, time to sit, think, daven, and just be; by myself, but not alone. I was intensely aware of the greatness of Hashem's chessed, of how wonderful it is to be a member of the Am Hanivchar. I realized just how important it is for me to find the time to get away and do something for me; not for my health, not for my family, but for my essence.
Shabbos morning I faced a new and unique challenge: the Morning Coffee Bar. To give you an idea of what it's like, try balancing yourself on one foot as you hold a disposable coffee cup under the hot water spigot, while at the same time people are bumping into you and thrusting their arms in front of your nose to grab things. Oh, and don't forget, there are plenty of kids of all ages darting back and forth just below cup level. Then (don't forget, you're still balancing on one foot) hold the cup steady as you maneuver yourself away from the hot water urn, wait (impatiently – I assume you're also human) for the golden opportunity to grab a small plastic, difficult to grasp plastic spoon from the basket and then, the moment the coast is clear, add the coffee and sugar, all this without once putting the cup down (no room for that!). After that, it's another hop to fight it out at the milk jug before somehow finding your way around all the people standing in the middle of the room and the carriages blocking the small area between the people in the middle of the room and the walls, to the safety of the nearest table and chair. All this without falling, fainting or saying something not nice to the woman who grabbed the milk jug away from you, almost sending you flying! I don't know how you'd fare, but let's just put it this way, by the time I got my morning coffee, I REALLY needed it! And brave person that I am, I even went back for seconds (and thirds…) although by then the coffee bar was relatively empty.
Parkinson's, like everything else in our lives, is an opportunity to learn, and grow, and change. I'm learning about myself, my strengths and weaknesses. I'm learning to give up control and that it's okay to be vulnerable. I'm discovering kochos in myself, and in my family that I never knew existed – oh my goodness, my husband can actually wash a floor! And I'm beginning to internalize something that I always knew intellectually: hishtadlus can only go so far. Yes, we are responsible to do our utmost, in both gashmiyus and ruchniyos, but we are not in control. Sometimes, our tefilla is to ask for the strength to accept that which is difficult. And yes, I am also learning how to make coffee at a hotel coffee bar: very, slowly, very carefully and with a large dose of patience, and when that becomes impossible, I will also learn to swallow my pride and ask for help.
This is the final installment of Binah's serial, Living With Parkinson's, but for thousands of women and men around the world, living with Parkinson's will remain a daily struggle. For some, their struggle is obvious, while with others, it would take a fine and sensitive eye to discern that there is a problem. Some people are upfront about what they are going through, while others keep it under wraps and hope that no one notices, until, of course, the natural progression of the disease makes that impossible.
When I set out to write this serial, I hoped to give people a glimpse into what it's like to find the mundane challenging (think coffee bar!), and to live with the knowledge that derech hateva, that challenge will get gradually worse. I hope that through sharing some of my personal trials and triumphs, you will have greater sensitivity for other peoples struggles, even if no problem is evident.
I also hoped to share the results of my research, with the hope that perhaps someone reading it will find a to'eles. And speaking of medical research, I want to share with you that I just read an article about how over a decade ago fetal stem cells were transplanted into the brains of PwP – people with Parkinson's. No improvement was seen for two years, so the researchers thought the trial was a failure. But then, after two years, the PwPs started seeing an improvement in their symptoms and eventually all, if not most, became completely free of any symptoms. New clinical trials (that means they use real human beings with Parkinson's) are presently being held in Europe. So yes, hope for a cure really is on the horizon. In my last article, I discussed depression in Parkinson's and how it's believed to be a result of changes in the brain chemistry. One of my readers pointed out that a powerful and effective class of drugs for treating Parkinson's known as dopamine receptor agonists causes brain chemistry changes that can result in an overwhelming desire to engage in compulsive behaviors, such as compulsive gambling and compulsive shopping! I've heard of people who, after taking these medications, lost their entire savings at the casinos! This is important information for PwP, for if they begin to have such tendencies, just knowing that it's caused by a drug is in itself comforting (Whew! I'm not crazy!) and it goes without saying that they should speak to their neurologist about changing to a different medication without this side effect. For people without Parkinson's, it's important to understand that diseases and drugs impact behaviors and emotions, and that that spouse/friend/child might not be experiencing psychological difficulties. He might just needs different meds.
Quite a few PwP or spouses of PwP have told me that they would really like to participate in a frum support group. I would like to organize a monthly conference telephone support group for frum women with Parkinson's or caring for someone with Parkinson's. If you are interested, please contact me.
And one last pearl of wisdom: Remember, people facing challenges, be it a disease, a divorce, a death, or whatever, are still normal. Life might be complicated, but we still want to have fun; to talk about normal things, like our children, or housework (or lack of housework!) or whatever. Or, from the email of one very wise and delightful woman whose husband has Parkinson's: "Yes i do like to talk abt shopping cuz im normal. Can i act shallow wen life isnt?????"
I cannot close this series without extending a personal invitation to my readers. I live a half hour walk from the Makom Hamikdash. Please, when you come to Yerushalayim to bring your Korbonos, stop in to visit me. Together, we'll run (without my cane, of course) to the Bais Hamikdash to sing a Shira to Hashem. Hopefully, today, and if not, then tomorrow. Ani ma'amin…