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Parkinsonís Disease

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1288047.  Tue Jun 26, 2018 5:12 am Reply with quote

Let me preface this by saying I was diagnosed with Parkinsonís Disease (PD) 16 years ago.
PD is described as a lack of dopamine, a neurotransmitter, in the substantia nigra, the area of the brain that handles automatic movement of the limbs and some other functions such as swallowing.
It is a progressively degenerative neurological illness in which, by the time symptoms start to present, up to 85% of the dopamine producing cells have died off... to date it is irreversible and incurable.
Statistically people who develop PD drink lots of coffee, smoke and on average have a higher IQ (unfortunately I missed out badly on the 3rd).
Though medical research has developed a far greater understanding of how the illness progresses, they have yet to discover what actually causes it.
Nor have there been many major advances in managing the symptoms of PD (in fact one of the medications I take remains unchanged since it was first prescribed for PD sufferers in the1960ís) though in fairness surgical procedures such as deep brain stimulation have been seriously refined since the invention and availability of MRI.
Dopamine replacement medication remains the primary weapon in the arsenal directed at managing the symptoms of PD, but the longer you take it the less time it remains in the system, in my case I started with a 125 mg tablet every six hours... I now take a 250 mg every 3 hours plus supplements to help smooth out the on/off effect of the meds.
Approx. 70% of people living with PD have the shakes that are most often identified with the illness, iím in the 30% that donít... we tend to freeze up.
The first indication I had a problem was under the shower washing my hair, out of the blue my left hand just stopped moving.
Like an intermittent fault sometimes it worked sometimes it didnítí.
I began to notice when walking sometimes my left arm would swing other times it remained stationary by my side.
But the problem really became apparent driving a vehicle with a manual gearbox when Iíd start crunching gears without realising my left foot wasnít taking the clutch pedal all the way to the floor.
Of course being a bloke I attributed all this to getting older, lack of sleep (working 14 hour weekdays) and stress but 12 months later as things got worse I started to think I was either going insane or had a brain tumour.
So it almost came as a relief when at the age of 46 the neurologist told me I had young onset Parkinsonís Disease... I had no idea what it as he explained it I have to admit my exuberanceíebbed a little, but there is nothing like having to confront your own mortality to bring the important things in life into focus.
Over the years Iíve learnt to take each day as it comes, living for that day, concentrating on what I can do and not wasting any energy worrying about what I canít.
Iím sharing this because there is very little understanding community wide of PD even though itís the second highest neurological illness in people over retirement age.
I used to counsel people living with PD over the internet many of whom were trying to hide it from their loved ones, desperate to the point of considering suicide they were so fearful of the reaction they might get.
About 70% of people diagnosed with PD are also diagnosed with depression.
This is so important to understand... if someone that is close to you is diagnosed with PD the chances are they are likely to be carrying a lot of illogical emotional baggage with them.
I was diagnosed with acute clinical depression.
Depression isnít self pity, for me it manifested as a claustrophobic heaviness similar to the oppressive feeling of a stinking hot very humid day but so stifling it was almost suffocating.
And worse it didnít made any sense!
I inherited a bright positive outlook on the world from my Dad, yet a fortnight after being diagnosed with PD I was riding my BMW K1200GT on a country road not far from where I lived at over 200 km/hr and seriously contemplating which tree I was going to wrap myself around... I had no intention of going home, but I suddenly realised the PD medication was working, that the cramping that had prevented me from riding for any distance was starting to subside.... that was a major hurdle overcome.
If the body detects dopamine in the blood it assumes the brain has no further use for it and disposed of it.
PD medication contains a chemical that stops the body from ejecting the dopamine before it reaches the brain... unfortunately this can have some unpleasant side effects such as causing OCD, gambling problems or an accelerated sex drive (once again no prizes for guessing which one I missed out on... it reminds me of the saying: An optimist believes we live in the best of all possible worlds - a pessimist fears this is true.)
I would become so fixated on a problem Iíd work on it day and night until Iíd resolved it. The gambling issue surfaced completely out of the blue and quickly developed into a serious problem that fortunately my neurologist was able to rectify with a change in medication.
Itís pretty scary to realise I was at the mercy of a chemical I needed in order to function but over which I had so little control.
Iíve concentrated a lot on the negatives so as to not sugar coat what is considered to be a devastating illness... but it doesnít have to be.
I learned the secret very soon after being diagnosed...
Donít be embarrassed - no one with PD did something to deserve it so encourage anyone you know with PD to tell people!
Not only does it help people to understand why I can seem awkward at times, Iíve found people really want to help, my local post office addresses all my mail because my handwriting has become illegible, I tell people Iím eccentric because when I do anything strange everybody accepts thatís normal behaviour for an eccentric person.
My appreciation for life has grown out of sight, but most importantly Iíve found the best way to remain relevant ibs to do stuff for others without seeking recognition or reward.
Iíve found to my delight you canít outgive the Universe.... maybe not scientifically provable but true in my experience.
Obviously Iím not embarrassed to talk about PD from a personal perspective... if you have a question Iíd be happy to answer as truthfully as possible, no subject out of bounds.

1288106.  Tue Jun 26, 2018 11:50 am Reply with quote

Thank you - that was interesting.

1288113.  Tue Jun 26, 2018 12:25 pm Reply with quote

Thank you Jenny.

Another fact of Parkinsonís Disease is that currently there are only 2 ways it can be diagnosed.
One is by a medical professional trained in assessing the physical signs then having their observations confirmed by the effectiveness of the dopamine replacement medication in managing the symptoms.
If a person is wrongly diagnosed, (there are other neurological illnesses that mimic the effects of PD) the medication will exacerbate the symptoms rather than relieve them.
I shared a ward with an elderly gentleman (well, older than me) in a rehab hospital who was misdiagnosed and the effect the medication had on him was the stuff of nightmares, though he recovered within a few hours after being taken off the medication.
The second is by post-mortem which, though fairly extreme, is the only way to clinically confirm the diagnosis.
There is no blood test or similar way to test for PD.

1288119.  Tue Jun 26, 2018 12:39 pm Reply with quote

Another aspect that might relieve people that have a parent with Parkinsonís Disease is only about 10% of diagnoses are familial, whereas the prevalence of the disease in older people is about 20%.
I have one brother 3 years younger than I that has always lived a fairly nomadic lifestyle and who has done just about everything that should have destroyed his health, yet apart from the fact you could count his teeth on one hand, he is still as fit as a Mallee bull.


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