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!
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