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 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.

 Hi Debbie,

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.

Dear Anonymous,

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,

Debbie. 

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.”