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Begin at the beginning

I am going to embrace my insecurities and go back, way back, to a time when MJF first announced. he had Parkinson's, and I had no inkling it would eventually get me "

"Poor guy,''   I said without a hint of sympathy to my name.  I wasn't being heartless, I didn't know what "Parkinson's disease" was but by the sound of the announcer's voice it couldn't be good.  I felt no sympathy; but, what the heck, I didn't know MJF either; so why should I care.  I didn't care, that is until I was diagnosed.

 Then I started reading and then I read some more. My conclusion was that things are very confused in the parkie world, so let's ask and answer questions that I have heard people say to me. in other words:

          “Begin at the beginning,” the King said gravely, “and go on till 
           you come to the end: then stop.”    

I shall, therefore, begin this catharsis with the number one question - 

WHAT IS PARKINSON'S?

Well, it is a condition of the body most recognizable to the public by tremors and shakes  It was named after the doctor wrote a paper entitled "Essay on the Shaking Palsy '.   That title alone should give you an idea as to the appearance of a person who has the condition but unfortunately shaking is only one of the symptoms.  There are many more.  Shaking is a surface problem but there are more devious ones, you can't see, waiting to attack soon.  Nobody knows what causes it but they are trying to find out.  We get reports all the time that a cure is in the offing but I have stopped reading them.

Doctors!  Even the most experienced knows very little, or at least they are not talking.  For us, it can be truly said,  “After you find out all the things that can go wrong, your life becomes less about living and more about waiting.”.

The problem is that while waiting, the condition worsens. 

I try to stay optimistic and so far, I'm OK, but every so often............. Well you know.

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
• 
  

• 
  

• 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.