Tag Archives: symptoms

Most Popular Posts on Parkinson’s Journey

imageThese are the most popular posts on Parkinson’s Journey:

Hundreds of people with Parkinson’s disease tell what their first noticeable symptoms were

People with Parkinson’s were polled as to what their fears are about PD. These are the answers.

What does it take to be an advocate for PD?

A poem on what people with PD live with

Facts about PD infographics

10 things every person with PD wants in life

This Is Parkinson’s

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my knees are shakin’
it’s not from being nervous
this is parkinson’s

stiff muscles abound
throughout my aching body
this is parkinson’s

lips quiver, teeth click
smile turns into a frown
this is parkinson’s

toes and fingers bend
involuntarily ‘cuz
this is parkinson’s

legs, arms, sides, back and
stomach seize up in great pain
this is parkinson’s

voice falters and fades
i shout and they yell ‘speak up’
this is parkinson’s

i choke on my food
swallowing becomes harder
this is parkinson’s

tripping and falling
walking like a cute penguin
‘cuz of parkinson’s

writing becomes hard
what once was legible is
now parkinson’s scratch

depression and some
forgetfulness issues are
because of it too

the little monster
is to blame
for most all of
that is wrong with me

the good and the bad
and the happy and the sad
a blessing, a curse

badly plugged poop stools
(to make it fit this haiku)…
due to parkinson’s

with one side I am
almost free and with the other
i am bound in chains

to a disease they –
I – we – all call parkinson’s
‘cuz that’s what it is

confusion and a
thing called forgetfulness could
be the… i forget

greater now is the
understanding, compassion,
‘cuz of parkinson’s

confusion, and some
irritability are
blamed on parkinson’s

and why not? if i
must bare this crazy disease
i ask you – why not?

why not blame it for
being snappy and silly
and for all things else

like running into
walls and tripping over chairs
and things of that kind?

why not blame it for
everything in life gone wrong?
seems fair to me, huh?

it took from my life
what wasn’t its to take and…
it just keeps taking

but am i angry?
no – i hold no grudges on
things i cannot see

and though i can see
God in this world around me
i aim no blame at Him

i do not see Him
in this hideous disease
but because of it

i see Him because
of His comfort and His care
and the way He loves

with His strong arms and
His great, matchless mercy and
never ending grace

He is in the all
His faithfulness trustworthy
with hope i endure

it may be ‘cuz of
parkinson’s
that i suffer
or maybe it’s not

but this i do know…
it’s because of God i live
joy unspeakable

Bringing Awareness to Something You’d Just as Soon Forget

  
Some  people think Parkinson’s disease is a movement disorder and they would be correct. Others would say it is a disease that affects more than movement and they would be right. Some say it starts with a tremor and that is likely. Some say it starts with stiffness and that is a possibility but did you know the first symptom that is often overlooked and undertreated is depression?

April is Parkinson’s Awareness month and with that comes a responsibility to make aware the effects of this disease to the community at large by those affected by it. If people wtih Parkinson’s disease (PD) or people who know someone with PD don’t bring an awareness to this debilitating disease, no one else will. If it’s not important to make known the importance of finding a cure with those affected by PD, it won’t be important to anyone else.

PD can take many forms. It can begin with depression, as stated above, include tremors, dystonia (a cramping and tightening of the fingers, feet, neck, and/or other parts of the body. The Parkinson’s patient can experience dyskenesia – involuntary flailing about movements. These are the signs/symptoms that most people generally associate this diease with, but that is becasuse these are the symptoms of having Parkinson’s that are visible. Other signs that are not as commonly known and have been associated with having Parkinson’s disease include losing the ability to smell, uncontrolled drooling, a softening of the voice, walking as if you are dragging your foot, a shuffled walk, tripping/falling, and more.

Parkinson’s disease is also known as an invisible diease becasuse there are many other symptoms that are found with having PD. Along with the visible signs, the invisible signs take just as strong a toll on the body, both physcially and mentally. These invisible signs can include severe back and neck pain, migraine-like headaches, a tightening of the muscles, a change in handwriting quality, an expressionless face, and also depression, as mentioned above. 

Someone can have all the symptoms associated with PD, some of the symptoms, and/or some sympotms can change or disappear. PD mimicks so many other diseases, such as Lupus and Multiple Sclerosis that it often makes it difficult to properly diagnose and often takes a neurologist who speciaizes in movement disorders to make a correct diagnosis. This is especially true with people who are experiencing symptoms at an age uncommon to those riddled with PD (the elderly).  This age group of people – those who are diagnosed under the age of 60 – are known as patients with Young Onset Parkinson’s disease (YOPD) and the number of those being diagnosed with YOPD is increasing daily. What was once known as an “old people’s disease” is becoming more common with those under the age of 50.

There are several organizations with resources readily available for the asking. These include the Michael J Fox Foundation (michaeljfox.org), the Natioinal Pakrinson’s Foundation (parkinson.org), and the American Parkinson’s Disease Association (apdaparkinson.org). In Oregon, the Parkinson’s Resources of Oregon (parkinsonsresources.org) is available to answer quesitons regarding PD and also has much informatioin available to the public as well.

PD doesn’t play favorites. It does not take age into account, gender, or race. It can affect anyone, at any time. It can advance quickly or it can progress slowly. The cause and the cure is still unknown, which is why bringing awareness to this disease is so important. If I (now 55 and having had PD for 24 years) don’t think it important in bringing awareness to this debilitating disease, I can’t expect anyone else to think it important.

Journeying with you,

Sherri

Out of Control

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drooling on my pillow
shuffling my feet
choking when i do
and when i don’t eat

shaking out of my control
my jaw, my lips, my face
all of them are quivering
i feel so out of place

i’m shaking on the outside
i’m shaking from within
i’m shaking all over
right out of my skin
 

toes that curl and cramp
fingers that stiffen and bend
is it in my future
to ever feel normal again

stiffness on the left
stiffness on the right
more cramping, more pain
every muscle – so tight

lots and lots
lots and lots of pain
pain masked, pain ignored
pain again and again

grief for things gained
grief for things lost
trying to live each day with joy
no matter what the cost

out of my control
i’m controlled by my brain
sometimes i feel so out of control
that i’ll go completely insane

depression vies for my attention
i push it back in its place
it beckons, mocks, screams my name
but i am not going to run its race

my speech is soft
my speech gets slurred
others often don’t hear and think
i haven’t said a word

mixed up, mixed up
out of my control
it might claim my body
but it will never break my spirit
or ever take my soul

 

Parkinson’s Disease and Dementia, Part 3: Hallucinations

“Have you had any hallucinations?” A question most people with PD are asked at each appointment they’ve had with their neurologist.

I always think about my answer, as it always feels like a trap to see if I’m losing it mentally. You see, if I say yes, they may think I’m finally going over the top. I’ve lost it. And if I say no when I really mean yes, do I have to admit that the floaters in my eyes sometimes make me feel like a hummingbird just whizzed by? What to say, what to say…

  • Hallucination: something (such as an image, a sound, or a smell) that seems real but does not really exist and that is usually caused by mental illness or the effect of a drug
  • Delusion: : a belief that is not true : a false idea; a false idea or belief that is caused by mental illness
  • Illusion: a perception that is not true to reality, having been altered subjectively in some way in the mind of the perceiver.

Some people with Parkinson’s disease experience what are known as hallucinations or delusions, which unfortunately can be part of the dementia process. These false ‘eerienesses’ appearing as reality (otherwise known as F.E.A.A.R.), tend to be more prevalant in the later stages of the disease and are more commn in people who have had the disease for a long time.

Many variables exist for hallucinations to be present, but it can be caused by drugs given a person to treat their PD. The type of meds, the dosage, the person – it all comes into play.

When you see things that aren’t there – people, animals, crawly creepy things – these are hallucinations.

Hearing things like a door open or close can freak you out, especially if it didn’t happen. Someone is knocking so you go to answer the door and …no one is there. The phone rings and the same thing. These are hallucinations.

You are reading a book and someone is standing behind you. But are they – really? (You really don’t want to turn around to find out.) This is a hallucination.

You smell something burning and figure dinner must be ready. However, when you get to the kitchen, the cook is reading a book and nothing’s on the stove. You are disappointed. Perhaps relieved. Dinner still stands a chance.

An illusion is a form of a hallucination. You see real things differently from how they really look. For example, the monkeys on the wallpaper appear to be swinging from tree to tree. Or the lampstand may appear to be Uncle Jed. And, the carpet under your feet appears to be moving like the tide coming in at the ocean. (What a nice thought – to be at the beach.)

In all seriousness, hallucinations (or FEAR) can be quite disturbing, causing much fear and anxiety. There are, however, things that can be done, as with those suffering with delusions.

Delusions are conjured up by thoughts and beliefs that aren’t really there, whereas we learned that hallucinations deal more with the senses. Delusions can include paranoia (no, there are NOT cameras in all the trees), jealousy (no, your 83 year old husband is not having an affair with the 19 year old who lived next door eons ago), and exaggeration (no you are NOT superman).

Hallucinations, illusions, delusions – all scarey stuff. Both for the patient and the caregiver. They can cause problems in relationships. They can leave the patient feeling confused, helpless, misunderstood.

HELP!!!

Get medical care/advice and rule out other causes. Get treated, if possible. Don’t count on someone else telling you that you’re hallucinating. They may be delusional. Safety could be an issue so make sure to hide the bats from both the weary caregiver and the wild patient.

It may not be PD that’s the culprit of your hallucinations. An infection that leads to a fever, or somethng else may be to blame for this one. Hopefully.

But then again, maybe hopefully not.

Journeying with you,

Sherri

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