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.”

  

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