Exactly What is Parkinson's, Anyway?

Cherry

By Silver Spun Sand

Tue, 19 Apr 2016
  • 3868 reads
12 comments
 
“It’s not all bad news; your condition is not particularly life-shortening...There’s certain to be a cure in the next ten years, or so...”  Thus spake the consultant at Bedford General.
 
When you’ve just been diagnosed with Parkinson’s at the age of 53,  it's not exactly good news, either. Fifteen years down the road, he (we)  is still soldiering on, still impatient for a cure that is even further away than it was then.  Seems the more is learned about the vagaries of the human brain...the most complex of all our bodily organs,  the more is realised how little we really know.
 
And so, the relentless regime of tablets began...low dosage medication, at first, but as the condition progressed so its strength was increased.  Parkinson’s is a progressive, neurological disease that gradually destroys the brain cells responsible for  producing dopamine. Dopamine is a neurotransmitter and these tiny chemicals cross the gap between the neurons in our brains, passing on messages, and is responsible for all our voluntary movements, from walking...picking up a cup of tea, writing a letter, turning over in bed at night, to the thing we all take for granted most, and that’s  our ability to speak.  Parkinson’s gradually eats away at all of these, and much more besides. 
 
The crux of the matter now is, that after fifteen years with the condition,  his medication has reached maximum dosage, leaving, solely, the relatively uncharted territory of Deep Brain Stimulation, or DBS as the last resort; a daunting prospect indeed, even though his symptoms have  considerably worsened along with marked cognitive deterioration as more and more dopamine cells bite the dust, rendering  pills less  effective  each passing day.
 
During a discussion with his Parkinson’s nurse specialist, about two years ago, she was keen for us to consider DBS as a serious alternative.  Not surprising – bearing in mind few Parkinson’s patients are willing to undertake the gruelling  procedure, and consequently it is difficult for the medical profession to judge its effectiveness, statistically speaking.  We were both more than sceptical, and if I mention the word ‘guinea-pig’...well, this is how it seemed to us. So, we decided to consult our daughter (a former RGN, currently studying for a doctorate in Child and Educational Psychology)  to look into it for us, which she was  more than keen to do.
 
Speaking of guinea-pigs we owe a lot to them...but that aside, when getting down to the nuts and bolts of things...the real nitty-gritty, the biggest risk of all is not to be sniffed at...the extremely high probability of suffering a stroke during surgery.  She tells us it requires two operations; one to insert probes deep into the brain and a second to attach the electrodes to a voltage box under the skin of the chest. It would also entail  a series of assessments , meaning he would have to go ‘cold turkey’ with his medication, so as to enable a clear indication  of his most troublesome symptoms.
 
“Well there’s your answer, then,” she concludes. “It is not a miracle cure, nor an easy route, but it is an option if things become too unbearable.”
 
As a family we agree that until then  he should bide his time, and so we continue...living from hour to hour, week to week, month to month, like fellow Parkinsonians. For us, presently, we feel there is no other choice, but should he ever decide to walk down that ‘road less travelled’, I’ll be right there beside him.  The trouble is, it would be just my luck to slip on an errant banana skin along the way and break my leg...but that, as they say, is another story.  But even if I did, god-willing our daughter would be there to pick up the pieces and put us together again, as ever.  
 
“By the way,” she quips as she’s leaving, “I’ve put the necessary wheels in motion to donate my brain for Parkinson’s research...not until after I’ve finished with it, of course.”  
 
It raises a smile, and beggars the question, ‘What greater love? ‘ 
 
And maybe, love will find a way, in the end, but for Muhammad Ali, Michael J. Fox, Billy Connolly, Billy Graham,  Lynda Ronstadt,  Roger Bannister, and my husband, I fear it is already too late.  And as for Pope John Paul, Pierre Trudeau,  Deborah Kerr, Vincent  Price,  Robin Williams, Bob Hoskins, Dudley Moore, and Mervyn Peake, sadly, it is already too late, but today marks the start of Parkinson’s Awareness Week, and I put it to you.  Surely, better late, than never?
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Comments

Submitted by Insertponceyfre... on

A very interesting piece! (There was something on the news yesterday about how many people with Parkinson's feel they have to hide their condition). The Deep Brain Stimulation sounds terrifying

 

Submitted by Silver Spun Sand on

Thanks, insert...and you are indeed right about the programme.  We saw it too, and it was the tears in my husband's eyes as he watched it, which prompted me to write this piece.

Tina

 

Submitted by Starfish Girl on

An education indeed Tina. I now understand a little more about the condition. Great progress seems to be being made in cancer treatments so lets hope the same will be so with Parkinsons, very soon.

Take care

Lindy

Submitted by Silver Spun Sand on

Amen to that Lindy.

Tina

 

Submitted by skinner_jennifer on

Thank you for putting this incredibly honest piece of writing on here Tina, it's certainly an eye opener which I wasn't totally aware of, not that I didn't know about Parkinson's, but not how extreme it could become.

The DBS Treatment sounds very frightening indeed, not something to take lightly. My thoughts are with you and your husband and I do hope they manage to find a less scary treatment for him.

Jenny.

 

Submitted by Silver Spun Sand on

I hope so, too, Jenny...with all my heart.

Tina

 

Submitted by Rhiannonw on

Thank you for the reminder that it is Parkinson's Awareness Week, and for the perseverance of the two of you, and your daughter's input and willingness in the background. As you say, the brain is such a complex organ, and there seem to be differences in the way people respond to the medicenes, and in the way the condition develops. All treatments can seem very rough tools, I hope more insight can give better treatments soon, and I suppose all who are receiveing treatment are in a way adding to the understanding of research as their blood-tests etc are collated. You have added to awareness by what you have shared. Rhiannon

 

Submitted by Silver Spun Sand on

I do hope so, Rhiannon. And how right you are about Parkinson's affecting people in different ways.  There is so much research going on right now, but little result as yet.  The main drugs for alleviating symptonms haven't really changed for many years, and even still they are no cure.  One day though I am confident there will be a breakthrough, so in the meantime, along with countless others, we shall continue living in hope.

Many thanks for your inspired words and empathy.

Tina 

 

Submitted by Terrence Oblong on

I used to worked at Parkinson's UK, so I've met a few people who've had DBS and it's pretty successful these days. THe benefits vary from person to person, but they can be amazing.

 

 

 

Submitted by Silver Spun Sand on

Hi there, Terence.  Your input more than interesting, and I thank you for it.  Maybe I/we will research it again.  You are of course, so right about the benefits varying from person to person, a bit like the symptoms of the condition itself.

Thanks again, and have a peaceful Thursday.

Tina

 

Submitted by celticman on

I've seen Parkinson and psudo-Parkinsonian symptoms by drugs that...well, you know. I think like cancer and motor neurone or even dementia, the great-white hope is stem cells. But I guess we've been saying that for ten years. And we'll be saying it in ten more. God knows the answer. 

 

Submitted by Silver Spun Sand on

God, indeed, celtic. 

Thanks, so much for reading, and for sharing your thoughts. 

Tina