two weeks after being diagnosed with Parkinson;s Disease I was also diagnosed with a rare neurological disease called "Cramp Fasciculation Syndrome". My Specialist, although very knowledgable' seemed thrilled with my disease. He continually asked me to explain what I was feeling physically but I just could not seem to have the right words to make him understand, so I worte it in a poem...
"Chaos"
My life is chaos,
a losing of self
pain is taking control,
accompanied by anger
and tears.
Tears,
I never use to cry.
Crying shows my
weak side.
I don't like feeling,
I'm all outside myself.
My body won't
let me be.
Just moving through my life
one step
at a time
causes my legs to cramp,
my muscle to twitch,
limbs throbbing as if
they've been deprived
of the air they need
to breathe.
Mornings usually full of
spiritual thoughts,
meditation and
yoga stretches
now only bring
self doubt, loathing.
A filling up of negativity
I've fought my whole life
to avoid.
My hip on which I carried
my precious child
screams with pain,
with every move
it travels across my back
in a tightening squeeze
pushing up into my right flank
until my side is on fire.
Reminding me
every second,
every minute,
every hour,
of every day
that my grandchildren
will only be allowed
to walk beside me
not carried by me,
or attached to my neck
with monkey arms.
The stress,
the worry,
the unanswered questions
cause my neck to hurt
and my shoulders to pinch.
My left leg goes numb,
just out of the blue,
a lifeless limb.
The minutes tick on
as my mind
tries to reason
for the fix.
There have been doctors,
and doctors,
questions,
probes,
tests,
drugs,
drugs,
drugs.
I am so tired.
I am no longer myself.
I cannot be myself.
I am lost.
There is something
wrong with me.
Something my body
won't easily share.
It gets so hard,
so hard sometimes,
so hard
to go on.
I miss laughing.
I miss me.
The artist,
the writer,
the lover,
the mother,
I miss laughing.
I am not a lifeless,
pain filled,
middle aged woman
who has to hire people
to mow their lawns
and help them shop.
I do not want my friends
calling me every night
just to make sure
"I feel Okay"
and is there anything the can "do".
I have always been
the caretaker.
It's just too much sometimes.
My mind wanders
strays off the road,
sees that drop off
to no where
offering a way to leave,
to leave this life
of pain.
Yet,
my morals,
my deeply instilled
love for life
keep me grounded
on the pavement
that delivers me home.
But the shadows
grow close,
they're whispering
in my ear.
Jupiterjane
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jupiterjane
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Wow, this is a lot to take in for just discovering your diagnosis. Your poem catches many of my symptoms, because I, too, have been diagnosed PD+, as I call it. Dystonia, Hydrocephalus, and within the first two categories I am multi-focal. It has been just over 4 years ago, and I’m 45.
The first thing I want to say is that I admire you reaching out so soon. Communication and working through this will have its challenges, so developing a supportive community that relates to your condition aids in your knowing that you are not alone in this.
Was your doctor able to give you support groups where you can go to share your emotions? I think this would be a great tool to help you through the rough moments. And you mention about suddenly your role as caretaker has changed, and coming from me, Mr Super Tidy, is difficult to do. It’s just a change you will come to terms with, and if you feel you can do a little, unless you are instructed, do a little of this, but listen to your body.
I fought the asking others to do things for me until I landed in the Neurology/Neuroscience Wing for 3 weeks. I will let you know a secret: hospital food is horrendous! So communicate and locate your local support group(s). I was told by the group I had in NYC that I was being too hard on myself, and they were right.
Last, we’re here for you. There is a library of information from these wonderful people. You are not alone. I will light a candle of hope for you tonight.
I'm sorry if you misunderstood. I was diagnosed with these diseases some 3 years ago and for the first year I was hospitalized several times, extensive testing, trial medications, etc. I has been a long road. I have grown in many ways but there is still some truths in the words I've written, and I can only imagine others out there in the same predicament.
Hi. Could you please elaborate on the dystonia hydrocephalus? I understand the dystonia in my torso, have had it for 20 years, just getting worse, now have it in legs and feet. But, pardon me for ignorance, what is the hydrocephalus? Re water? Thanks.
My goodness, this is quite some prose. One line alone is enough to think on, never mind a whole page. A few things really kicked me :: 'I can no longer be myself' - I had this feeling and I had what I describe as a 'bereavement' letting go of the girl I once was ... but I have learned that the new me is kinda cool, and I like her. 'I miss laughing ....' I could miss so many things I have given up, but I don't as the gap they leave I fill up with something else. I won't let my life empty away, I keep topping it up and up and up and up. "The shadows grow close.....' your defense is your light, it shines brightly underneath the words you write, and I have no doubt that is shines in many other ways also. You can have some of mine too, if ever you need it
I totally understand your feelings.....When I was first diagnosed with PD I felt like I have been betrayed by my body. The frustration of the body not responding to the brain commands is sometimes too much to bear. Four years later I have mostly good days. "Good" measured by PD standards, not normal or pre-PD standards. Keep coming back to this group. We understand.
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How do you deal with not letting the disease define you?
Why I rarely post anymore
5/30/22 Day 12+1 of (Day 4 of none) TTDF (33.3mg B1) :-)
For Someone Struggling with Being in the Way
