Maybe you will win the next lottery

I don't know about you, but I like being alive in spite of all my problems.  We have degenerative neuro- blah blah blah.  l think we should spend our time on the sunny side of the street.  The alternative is to wallow in the shadow of our many-symptomed problem.

Besides, nobody gets all of the symptoms at the same time, and we are expected to live a normal life span.

And then there is this:

             "'God, why me?' about the bad things, then I should have said,
               'God, why me?' about the good things that happened in my life."
                (Arthur Ashe)

Don't let a list of symptoms get you down and don't let your diagnosis interfere with your joy of life.  If you let yourself taste despair, well you might as well.......

This 10-year victim wants you to know, it's not all that bad.

From here to infinity.

SYMPTOMS - SO MANY! WHY ME?

WHY ME?

The following was copied from https://www.parkinson.org/Understanding-Parkinsons/Symptoms/Non-Movement-Symptoms/Depression.  This site is a good place to read about PD.

Movement Symptoms   

There is no single test or scan for Parkinson’s, but there are three telltale symptoms that help doctors make a diagnosis:

1. Bradykinesia
2. Tremor
3. Rigidity

Bradykinesia plus either tremor or rigidity must be present for a PD diagnosis to be considered.

Another movement symptom, postural instability (trouble with balance and falls), is often mentioned, but it does not occur until later in the disease progression. In fact, problems with walking, balance and turning around early in the disease are likely a sign of an atypical parkinsonism.

Additional Movement Symptoms

• Cramping (dystonia): sustained or repetitive twisting or tightening of muscle.
• Drooling (sialorrhea): while not always viewed as a motor symptom, excessive saliva or drooling may result due to a decrease in normally automatic actions such as swallowing.
• Dyskinesia: involuntary, erratic writhing movements of the face, arms, legs or trunk.
• Festination: short, rapid steps taken during walking. May increase risk of falling and often seen in association with freezing.
• Freezing: gives the appearance of being stuck in place, especially when initiating a step, turning or navigating through doorways. Potentially serious problem as it may increase risk of falling.
• Masked face (hypomimia): results from the combination of bradykinesia and rigidity.
• Micrographia: small, untidy and cramped handwriting due to bradykinesia.
• Shuffling gait: accompanied by short steps and often a stooped posture.
• Soft speech (hypophonia): soft, sometimes hoarse, voice that can occur in PD
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• NON MOTOR  SYMPTOMS can include:

• • Cognitive changes: problems with attention, planning, language, memory or even dementia
  • Constipation
  • Early satiety: feeling of fullness after eating small amounts
  • Excessive sweating, often when wearing off medications
  • Fatigue
  • Increase in dandruff (seborrheic dermatitis)
  • Hallucinations and delusions
  • Lightheadedness (orthostatic hypotension): drop in blood pressure when standing
  • Loss of sense of smell or taste
  • Mood disorders, such as depression, anxiety, apathy and irritability
  • Pain
  • Sexual problems, such as erectile dysfunction
  • Sleep disorders, such as insomnia, excessive daytime sleepiness (EDS), REM sleep behavior disorder (RBD), vivid dreams, Restless Legs Syndrome (RLS)
  • Urinary urgency, frequency and incontinence
  • Vision problems, especially when attempting to read items up close
  • Weight loss
  • 
    
  • WHY DO WE CONTINUE TO  LIVE?  see tomorrow's entry

At life's edge - the death of my wife

ONE HUNDRED S1XTY NINE DAYS AGO,  I lost my wife to the Big "C", a hateful, spiteful disease that creeps up on you like a cat on a sparrow.  It tempts your happiness for just existing.  It's a killer.

My wife went quietly, surrounded by family,   Dignified but still gone.  I held her hand as her life force drifted away.  She had raised 3 great children while I had shuffled along for the ride.  You see everything that is good in our family can be traced back to this wonderful woman.

At first, I didn't grieve too much; after all, she was just out shopping and would be home in an hour or so; and when she gets back we will talk , but.......

She can't be dead!  We had plans......

A moment arrived and settled all around me.  It crept into my body and ruffled my brain, plying me with its syrupy proclamation.  She is dead!  I saw and felt her last breath.  She is gone.  She is dead but  I will always have her with me.  My memory of her smile and her lilting laughter is etched into the ether.  That memory will never die.

 I saw them take her away in a plain, very nondescript body bag and I made room for a twinge of reality.
 
 Sudden grief flooded the surface of my being.  She was not shopping, she was gone forever.  Would I ever wake up from this hideous nightmare?  When will the grief pass?

 My kids have been great, keeping me occupied.  They worry too much.   I doubt I would be able to see a future for me if I didn't have their help and support.  but....

But when they leave after visiting and I am alone, the silence can be deafening.

Welcome to our hallucination

• Visual hallucinations. ... 
• Auditory hallucinations. ... 
• Olfactory hallucination. ... 
• Tactile hallucination. ... 
• Gustatory hallucination. ... 
• General somatic hallucination. ...

And the list goes on. 

I have encountered the first three but no doubt, I will be set upon by the others before I die.  

I have just concluded that life is a consensual hallucination;  we don't really exist, we are just figments of each other's hallucinations. Somehow we have found a way to hallucinate a common hallucination.

For some reason, we attempt to discover what mechanisms control our existence, to explain the unexplainable, to find order in our mutual chaos.  Why bother? You will just develop theories, ideas that can never be proven (or is that "proved"?).  For example, the big bang theory.  What a load of dung!  How are you going to explain the existence of the singularity that you vaunt started the mythical explosion? Why can't you accept that not everything has a beginning and an end? The only certainty in our mutual delusion is "change" which is inevitable in a chaotic system.  Your theories will remain theories. 

But. for that matter who cares?   

  Thus endeth today's rant.

BTW, hallucinations are not uncommon in PD

Living is a delusion

THIS IS THE END MY FRIEND

After 9 or 10 years of reading and writing about PD, I am done, done on the ins and out of PD but not on the blog.  From this point on, if you choose to keep reading, you will be hearing about the vagaries in the life of  PWP.  If you want to keep up-to-date about PD, I suggest you go to FaceBook and search for Gary Dikkema, who runs a blog called "Parkinson's in the Peg" 

I will be back soon.  For now, I'm only sleeping.

10 years!   Ten years since diagnosis.  I knew something was wrong a year before.  So let's say 11 years with this mindblowing condition and while I am in decent shape, I still have no affection for some of what PD has given to me:

This will be the Cole's Notes version of my new world.  What started out as a slight weakness in my right hand has blossomed into all-out  PD and yet the drugs keep my public symptoms from surfacing.  You would never know I had PD, but beneath the surface:

1,     I have a resting tremor
2     I grow more rigid as the months go by
3     I move at glacial speed
4      I festinate (look it up)   Not often, but it happens.
5.    I have absolutely no sense of smell
6    My voice is disappearing.
7    I talk slower in a monotone
8    I can't find words when I speak out loud
9     My ability to write (longhand & print)....yep....gone too
10   hard time eating, usually the last one to finish
11   sleep disturbances..... I rejoice if I get 4 hours sleep
12  constipation
13  fatigue

And that's just a few of them and yet, I carry on and accept this my life now and for the future and I am still an optimist.  I think 2020 will be a banner year.

Parkie dementia - it is all in the statistics.

I know, I know, I have been there and done that! It happens late at night when you cannot get back to sleep.  You let your mind plot against you.  It tends to do that as the dopamine relentlessly disappears from your brain.  It goes like this:

Oh my God!   Will my PD turn into  Alzheimer's? Afterall, we share similar symptoms? Or will I be struck down by PD related dementia???

First of all, PD is not Alzheimer's.

For example, a man with PD, loses his key and he asks his wife, " I can't find my keys. I forget where I put them.  I will keep looking."

A man with Alzheimer's doesn't lose his keys.  He can't.... because he can't remember what a "key" is.

What is in our future?  In the final stages of PD, 20 - 25% of PLWP develop dementia severe enough to interfere with their day-to-day life, about 10 - 15% higher than most people who live without PD.

I conclude:

Most PLWP will not develop dementia......hurray???????