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…  

  

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!