The beginning of the unwanted guest

HI everyone
I started writing down my memoirs with the intention of shocking my sons, you know how it is…they think life did not start till they arrived in the world. Ha ha. my writings have many twists and turns, as life does, and this is the beginning pf my Parkinson’s journey….
I was 54 when I was diagnosed with Parkinson’s, 7 years ago….
In hindsight it is difficult to say when I became aware something was not right in my world.
Could have been the time I was walking to the carpark and stepped over a foot high wall and fell flat on my face before I knew I had even fallen! A lady ran over to me and asked if I was okay, I smiled back and said yes, just my pride is a bit sore.
I sat in the car afterwards and said to myself how did that happen? I know I saw the wall,
I know my brain acknowledge the idea to step over the wall, however appeared to forget to tell my left foot to follow through with the instruction!! How strange….

There was a time as I was walking, could feel myself leaning towards my left. There was a wall next to me and I put my hand out to steady myself. Thankfully, the wall was much higher than the one I tried to step over before.! No dizziness, just an inability to stand up without support.
I could see my car just 20 meters away. As quickly as it came on it disappeared, and I made a dash for the car. The relief to get in and sit down was immense. I had a drink and sat for 10 minutes or so and drove home. It never happened again.

Or the fact my left foot /leg shook. I am sure people in public thought I needed the toilet. As I danced about in queues. My sons joked about it and said “if you didn’t lean up against something would you just go around in a circle indefinitely. I did not try it I may add.

I used to pick my grandchildren up from school on an afternoon. Half an hour before the bell rang, I would park in my favourite spot under a cherry tree. I enjoyed hearing the noise of the cherries bouncing on the roof as I drove under it. Even the grandchildren asked for this spot. Funny I used to feel disappointed if someone else was parked there when I arrived.
I arrived early so I could read my book…So there I was book in hand and started to read. Only to find the book was trembling. I can recall thinking …. you have got to be joking, first my leg and now this. How can I possible have a trapped nerve in my arm and leg.??
I think I need this checking out.!

Next time it is the joy of the first Doctor’s visit

Love Esme

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I look forward to your next instalment. My story is that of partner to man with pd. My kids don’t know the half of it and probably don’t want to😊

Thank you, my memory is not as good as it used to be, and even when it was good, it was not great, So writing helps the cogs keep turning.
And my friend said tell your story it may help people, so we know we are not alone in this.
Esme

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Well, my first visit to the Gp was a slap in the face! I knew something was not right and was expecting an x ray and back to physio. (Who may I had was a kid who did not appear to know my elbow from my foot, to be polite.)

GP tells me straight out … you do know you have Parkinson’s? …Really…. I thought I had a tapped nerve!!
Then proceeds to tell me his mum has it too. She now has depression; it is quite common in Parkinson’s patients. But it is okay I can give you antidepressants for that….
You will be on medication for life with your Parkinson’s now. But do not take the medication too soon as it wears off within ten years. And NHS has nothing more to give you after that. But we can get you purpose built housing for now and in later stages you have residential nursing care!

Woo woo Hang on …. Slow down Mister GP man, let me go back to the ‘you have Parkinson’s bit’! and process one bombshell at a time.

I sat afterwards in the car, just staring through the windscreen. I knew my granddad had it. note I refer to Parkinson’s as IT! And I recalled….
We came up from the south, to visit grandad Albert, for what was my last visit as it turned out. Gran had the bed brought down into the front room. It was a small two up, two down, with the ‘netty’ still at the bottom of the garden. in a northeast town. (I was thirteen and stunned to think it was 1974, and people had outside toilets!! But that’s another story). An Aspidistra in the window and brass pan and kettle, hanging on the wall. And the front step brilliant white and spotless, gran 76, still got on her knees and washed it weekly even then.

My grandad Albert had been a 6FT, what you would call wiry guy, very strong. Well in the past he was. He worked as head Furness man in the ironworks, wore a cloth cap and smoke roll ups. He would hide by all accounts in his allotment after work, tending his Dahlias. And only going home when he knew his tea was starting to get cold. Delaying the earful, he would get off my gran, Edith….
I remember him as a jolly guy, kind-hearted, always taking the micky out of my southern accent.
What I saw that day was not the man I knew. Even at thirteen years of age I could see the pain in this weakened man. Gran brought a pot of tea and fruit cake in. And placed Grandad’s bone China cup and saucer on a small table next to him. He could not even pick it up his tremor was so bad. I felt so sorry for him.
My mum picked up the cup and held to grandads’ lips and he sipped it slowly. He smiled warmly and touched my mother’s hand lightly.
That was my last memory of Grandad Albert.

I collected myself and drove home, to make tea for my foster children, yes, I’m a foster carer and live on my own. How was that going to pan out??

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I have recently been diagnosed with PD, a shock to the system.
What great writing, I want to hear your story, Esme.

Thank you thats so kind.
yes it was a shock and i’m still coming to terms with it’s ‘gems’ of change .
Esme

Hi @Esme
Your story is really a great writing. Whilst reading your story it’s giving me an inspiration to write as well. Looking forward to your next one.
Hope you are keeping well.
Take care
Tinku.

Dear Esme,

I haven’t posted on this forum since I was diagnosed with PD five years ago, but your writing compelled to do so today. My father had PD but I didn’t really know much about it until I myself was diagnosed with it and this was because he never really spoke about it. I was diagnosed with PD three years after he had passed away and I so wish he had written down somewhere all that he had experienced with this awful disease. Interestingly, he did write his autobiography but it focussed on his achievements which in reality turned out to be his many failures in life and all the stresses he had suffered as a result. He firmly believed that abnormal stress was the root cause of PD; I wouldn’t disagree.

I would love to read the rest of your memoirs, not only because of the family connection with the disease but because it’s just a great read.

Let’s hope you can close your story with a positive end of a cure or something better than what we have at present.
Take good care of yourself

Regards
SJ

Hi Thank you so much.
It was my friend who said i should share my stories. I am not writer , just a grandma writing stuff down , one, before i forget, two, because sometimes i get scared and it is a good way of getting anxiety out your head, and clear some space. And my friend and family say it is easier for them to understand what I going through. As i find it hard to express myself face to face sometimes. this way is less direct and gives them time to process .
Esme x

Hello Esme
Some days I despair. Even if what your GP was telling you was absolutely correct ie in a nutshell, meds last 10 years and after that there’s no hope, there are ways of breaking that sort of news with sensitivity and compassion. That it is not even accurate is unforgiveable.
Tot

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Do you know, when my husband first went to his gp with a slight tremor, he got told the same. If its parkinsons the drugs only last you 10 years.
Course as soon as he got referred to neurology, first thing they did was start medication.
Once your on that treadmill there is no going back.

Scan and first visit to see consultant……

After the GP on my first visit had filled me with fear. He had arranged for me to have scan. Now it was getting real.
I hate confined spaces, at the best of times, And the thoughts of being helped into and encased in a giant washing machine, certainly did not appeal. My friend came with me, and I had hoped she could have stayed in the room and talked to me. but practicalities meant she could not.
So, as you know anxiety ups the tremor to Richter 10! The nurse positions my arms and head, fixes this kind of mask over my face, so my head cannot move. Gives me a button to push if I am starting to get anxious. And then comes out with a corker comment…. Please can you stop shaking, it effects the imagining!
I said, that’s why I’m here, because I cannot stop shaking. So, I am sorry about that. She replied okay do your best…. I could have said something I may have regretted, so said nothing.
To be honest it was not too bad, keep calm and deep breathe I tell myself. You have had three babies for heaven’s sake. and a little voice shout back …yes but not in a washing machine!! I quite liked the clunking of the machine, it was Reassuring Listening to it, nearly done!
When I saw my consultant for the first time, I took my friend with me for support, always a clever idea, Consultant was a very gental mannered man, and made me feel at ease straight away. put me through walking, holding my hand tests. Asked lots of questions. Confirmed I had Parkinson’s and informed me my scan showed no other problems for now. He informed that he could start me off on medication, But at that point I did not feel I wanted anything . I had got my head around the PD, it was not impacting to much on my daily life, So we both agreed to postpone it . When you are ready , we can do it then.
He then astounded me with saying, you had this for years. Have you or your family noticed anything? I laughed and said no, but I’m a little quirky anyway, so nothing would surprise them.
So, I was well and truly on my PD journey….
Esme x

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