Parkinsons (my version anyway)

Living with Parkinson's Daily life
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P. Pain not just physical but mental too, we all endure
some not as much but others a lot more I`m sure
My legs hurt most of all, its there in the morning when I awake
and can remain all day, regardless of the pills I take

A. Another annoying symptom to add to the list. How many more?
Stumbling about with feet that shuffle and stick to the floor.
Slurring my words, losing balance and falling over as if I were drunk
My face seems frozen with an open-mouthed, lost look as in a blue funk

R. Regrets, I only have one. Bringing Mr P to my wife’s door
50 happy years she has given me, she deserves so much more
We were happy, enjoying retirement together until he came along
it’s not an easy task looking after me now, I hope she can remain strong

K. Kindred spirits on the UK Forum help keep the faith and reduce the hate
that hate dwelling inside me for this condition. I just hope I can reciprocate
There is always someone there with words of wisdom and advice
to lift you when feeling sad and down, it is no paradise

I. I was awarded the title “Master” of my craft during my time on the tools
good with my hands, proud to have achieved such a high standard
That was before Mr P. came and stole my dexterity, the thieving bastard !!
Now my handwriting is like an Eight year olds scribble and I feel like a fool

N. Next, its a worry, what the future holds is a mystery I can not postpone
I have changed so much its frightening, I am sure im in the Twilight Zone.
Gone is the confident retired businessman who looked back with pride
Now I dribble, struggle to walk, can hardly talk. I just want to hide

S. Sorry, sorry, sorry I am fed up with saying sorry
I feel like the guy on TV when everything he touches “turns to skittles”
Like many other sufferers, Mr P. is not the only reason I visit hospitals
They are great places and do a great job, im not having a go, sorry

O. Only time will tell what happens to me, as I battle this mysterious condition
Fight on I must, there is no other choice, it remains my mission
To overcome whatever that thief throws at me, I will strive to endure
My tanks are almost empty, I only hope its not long before they find a cure.

N. Not all of my symptoms have been listed, there are far too many to mention
I am also confused at times trying to separate the condition
from the side effects in the cocktail of medication.
I think that it needs a qualified Doctor or perhaps a Magician

S. Sorry, sorry, I seem to remember writing this before.
Yes look, it’s just up there, did I tell you, I easily forget.
Please dont tell me of any mistakes or the fact this last bit doesn't rhyme I dont care that it’s been done before.
This is Parkinsons (my version anyway)

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This is the first thing I read,
sìnce getting out of my bed.
Of it, memories I’ll keep,
despite my returning to sleep (…almost immediately , already eyelids at half mast )
Rose :sunglasses:

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Hello Mal good print on how parkies makes you feel. We all wish we woke up and the disease was just a dream. When the symptoms got the best me I was just 59. By that time employer(20years+) was on my rear. Said I walked like a old man, To slow to get my work done,and made too many errors on programming my CNC machining center. Made very few errors the previous 19 years. Replaced me with a younger tech school grad.
At 59 you are too young to retire and too old to be hired here in the states.
Money means more than respect for people.(Kinda sound like something you had heard on the news before) Well I never went to that school. Money never comes in front of what is the right thing to do.
Mal to me your mess and button is normal.

Any way just wanted to tell you I admire your fighting. Better and fight today. Then quit and have no tomorrow! Tom

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Hi Omshatom,
Many thanks for your response Tom, I have said many times, I consider myself fortunate in that this horrible condition ( i refuse to use the other word ) waited until I was in my 70s before it showed its face.
I can well relate to your work experience as it is much like mine. Redundant after 23years with the same Company. Too young to retire, Too old to employ. I share your pain Tom.
Thanks for sharing youtr thoughts.
Mal.

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Hi@Omahatom, I am going off-piste a little I know but I wondered (Typical British) what the weather was like where you are Tom?
I gather there are parts of the USA have it pretty bad and how are you coping with such low temperatures, Its -5 degrees with a few inches of snow and the Country grinds to a halt over here,
Mal

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Malc t how very honest absolutely true,just hope you feel somewhat better for putting it in words.
Writing is good theraphy I water colour paint it helps a lot, Patrick,K

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Hello Patrick, thank you for getting in touch. You are spot on correct about it being a good therapy, I find it much easier to share my thoughts and feelings with other sufferers on here than speak to friends and family.
I see you are in Somerset ! We lived in North Wootton near Wells before moving back to the North East Its a different world.

Mal.

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MalcT
Sorry I did not reply sooner. Well Last Tues. was a high temp of -6F with the sun out. The low was -15. That night when the front moved in we had up to 50 miles /hour winds. I would have to run downstairs to the car to see what that would be in kilo/hour. Now for the kicker today Thursday the high is +40F and Friday +50 here.

The Jet Stream with the warming of the earth has drastically changed. I try to tell the doubters that summer temps stay under 100F because the farmers irrigate everyday.
That cools the ground. But our planting season has gained 10 days since I was young.
10 fewer days of frost. MalcT I go back to money. Our new leader (IMO) Cares more about oil money and the stock exchange and his rich friends. Where I come from Human beings and our Allies come way more than money. My Dad fought with along side you Brits. I be talking to you later.

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I will look forward to it Tom,
You sound a bit like me still work in old money 50 miles an hour is clear enough for me.
I have just read your post regarding “Effects of slower cognition speed” and I do not understand how I missed it. The reason I first went to see my Doctor was “I was living in the slow lane” Everything I did, took so much time and I was making so many mistakes even with the simplest of tasks. Even now with all the medication, I am still slow. the only difference is I now know why. If I was to single one thing I have done to “help improve the deficit” is I started to go to an exercise class. Not a gym type exercises Nothing strenuous. It is run by a physio especially for people with Parkinsons and concentrates on coordination. I must leave it there Tom Im falling asleep and my wife has called me three times to go to bed,

Mal.

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malcT
I also have PD, diagnosed > 9years, and like you I suffer leg pain getting up from bed in the morning. Some ways I dread going to bed, knowing the consequences of my action. But what I do to mitigate the inevitable pain, I have a vibralite watch which wakes me up an hour before actually getting up. To allow me to take Madopar and paracetamol, BEFORE I get up. (Whoe betide me if I don’t do this). Within a half hour of getting up, after early medication, all leg pain gone.

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Hi, @frosty, Thank you for sharing your experience and your tip on taking medication before getting out of bed. Currently, I take my meds at the same time each day, in an effort to miss meal times by 1 hour or so. 8am 12noon 5pm 8.30pm.
I will give it a go and let you know
In addition to these, I have recently started to take Melatonin 1hour before bedtime in an effort to improve my sleep (quality and quantity).

Mal.

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Hi, @Omahatom.
A little dicky bird tells me you had a total knee replacement when you were only 47 !!
That is very young to need a knee replacement, was it a sports injury Tom? and how is it lasting some 17/18 years on
I told you we would make a good team. Both my knees have now been replaced, the latest only 5 months ago (Arthritis)
The NHS over here try and delay such ops. until you are in your late 60s / 70s. It was the strangest feeling being wide awake whilst they operated. however, I am pleased to get rid of that additional pain.
The disappointing thing is my walking has not improved, I still shuffle rather than stride out and my feet still stick to the floor.

Mal.

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malcT football very young but continued to play. Boxed ran a lot. Had several operations on right knee before the total replacement. My dad wanted one of us to be a pro player in some sport pushed us to play hurt. WW2 vet. He was a good at any thing he played. They in boot camp had to get in the ring with the sargent. My Dad had to carry his M1 over his head till he dropped. My Dad knocked the sargent out in the ring. Probably should of held back a left hook. The war took away his chance to make it in sports.
My sister has a son Pro goalie stopping pucks Chicago Black Hawks.
As far as my knee replacement goes it is not the best. But if I get the knee redone I am afraid of a wheel chair replacing the shuffle.

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I hear you Tom regarding the wheelchair, loud and clear.
Your Dad sounds a card, there’s nothing wrong with a dad who wants you to succeed
Thanks for coming back to me.
Keep well.

Mal.

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Hi @arnold77,

Many thanks, Arnold, It was a lot tidier before I pressed the button, but I am pleased you took the time to read it and enjoyed it.
Regards

Mal.

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malcT my dad passed in 2000 cancer leukemia and lymphoma at the same time. My dad had one of his brothers and one of his sisters get Parkinson’s. They all were the type to never give up. My father was a honest man never cheated no one that I could remember. He stepped in when he felt someone was being mistreated for something they did not deserve. He would give you the shirt off his back if you needed it. The word of God was first and want people thought of you as a person second and money well he never had much of it.

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Hi I’m Ken’s wife I read it to him as he is not well enough but we both agreed it’s a brilliant poem.says it all and as you said there is still more to our problems.(no idea how I got Arnold for his name) typical of me lol take care xxx

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Hi @arnold77,
Hello Margaret, I understand Ken is a long time sufferer, which also means you are too. I know from my own experience that a wife suffers as well just in a different way.
Thank you for your kind words.
My thoughts, best wishes and prayers for you both are with me tonight.
Mal.

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@Omahatom,
Hello Tom, it’s great to hear someone speak so fondly about their father, you are obviously very proud of him. it also sounds to me that the phrase “Like father, like son” is so true.
It reminds me of a pact I made with my Dad almost 60 years ago, part of which I touch on in my poem. I was 14 years old at the time and about to start my working life,
I remember it as if it were yesterday, (now I can’t even remember what I had for breakfast yesterday)

Mal.

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Thanks it really is hard for us partners to watch you suffer Ken carn’t be left at all for past three years as he has dementia associated with Parkinson’s and sadly it’s me he’s chosen to not speak to only when he wants something (thinks I work for him) I get 5 hours on a Saturday to go to see a friend so life completely has changed you take care love to you and your family xxx