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Wednesday, June 24, 2015

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!








Thursday, June 18, 2015

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.

Wednesday, June 10, 2015

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: info@pdf.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.    

Wednesday, June 3, 2015

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

My response:

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,

Debbie 

Her response:

Dear Debbie,

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.