So very well said - I suspect many of us can relate to this poem
Hi Hubby,I cried with you over your wonderful poem,you have put all your words into a lot of people’s minds,it’s opening up,crying out.Hubby do you write other poems about your feelings,or to Parkinson’s folk?
Thank you for that lovely poem. It made me cry but expresses so clearly the feelings of PD that is hard to get across to our loved ones - no matter how much they care.
So sorry for the delay in replying.
I’ve had a bit of a rough time just lately.
Due, I am told, to my taking myself (very gradually) off of my meds. I became an emotional wreck. Breaking down at the drop of a hat. I also noticed that I was becoming unstable on my motor bike. Culminating in a fall and some very sore ribs.
I have some other stressful issues going on at the moment that I won’t burden you with, but the long and the short of it is that I am back taking one azilect and half a sinemet per day…
I am no longer feeling sad all of the time.
I am no longer feeling anything.
I have seen a psychologist who says that I am stressed and depressed.
I have been given sertralina. Which I haven’t taken as yet.
It may be coincidence but I ran out of cbd oil a few weeks back and I haven’t felt the same since.
My boss is contesting my illness and I have to go through the court to try and get some money ( things work differently in Spain). I have therefore had no money since September. More stress.
That’s about half of an update.
Have a good Christmas everybody.
I’m sorry to hear you’ve been going through a rough time recently, it sounds like you’ve been coping with quite a bit of stress.
I just wanted to mention that our Helpline is available for any advice you might need, or even to have a chat about what you’ve been going through lately. You can give them a call on 0808 800 0303. We have information on the Christmas opening hours here: https://www.parkinsons.org.uk/news/living-well-parkinsons-christmas
Best wishes, and happy holidays to you,
I’m still fighting.
You really do have a talent for expressing what we are all feeling. I often feel like I am acting a part and that the real me is getting buried away deeper and deeper away from prying eyes. I have been away on family holidays and felt lonely. Like a stranger watching from the wings. trying to act normal and go unnoticed. I am still working on the poem book.
Christmas is coming, I’m at a loss
Of boogie nights, no stuff or enough
But for simple nights, filled with delights
To watch those I love, enjoy more and more of stuff
It gives me warmth, it fills my shoes
With golden tickles as once in their shoes
For life is a reflection of mine, it feels once as I
So no remorse or envy, frustration or other
It does me so much good to see their pleasure
Christmas brings to all, in nice things
I borrow the feeling from one to another
By being part of the sight is somehow my other
A simple pure included delight
No thoughts, just sighs of how so very very nice.
I try ignore the ruddy thing, works for me…most of the time.
A great trick if you can pull it off Jules!
It is the physical reminders that give me away. Like getting out of a low chair,packing my goods at the shops, even going to the toilet. When I’m around others I am always conscious that things take me longer than other “normal” people.
It makes me feel rushed which then flusters me and makes things worse.
I end up deliberately avoiding situations where I may be caught out which affects my quality of life.
I’ll keep looking for an answer though.
Happy New year to everybody
Hi Hubby, you might want to try what I do when in a shop and there’s some huffing and puffing or tutting going on behind me because I am slow packing or having trouble getting money out of my purse - turn towards the source, look them straight in the eye, smile and say as loud. as you can (so surrounding people can hear) something along the lines of ‘I know, my Parkinson’s frustrates me too, sorry to hold you up I seem to be stuck in the slow lane today’ Most people look embarrassed that you have drawn attention to them and start back peddling furiously ie take your time, I’m in no rush, can I help etc. Can be very effective.
Hi Tot how are you keeping?
[quote=“Hubby, post:31, topic:14890”]
[/quote] do you find writing helps you Hubby?
Only sometimes Jules
Happy New Year to you and yours.
Your thread here is going really well. Did, you make a decision regarding the sports book Yet?
It sounds like you are back to your chirpy .self.
Keep on fighting H.
Good days and bad ones Malc.
I am happily occupied looking after my little grandson at the moment. He’s filling up my days. He gives me something to keep going for. We need each other.
Hope all is well your end.
He sounds a handful of happiness, my three are all in their 20s now but I still remember when they were Two !,
As for me, im good thanks H. I have just started to attend a local exercise class designed for PD sufferers. I have been stumbling about a lot of late and found this class was brilliant as it concentrated on balance issues. It also gave me a chance to talk to fellow sufferers over a cuppa after the class.
Its good to hear from you pal.
you have put into words exactly how I feel
For seventeen years I have fought to stay one step ahead of this Parky nightmare
But I will keep on fighting for my friends and family that care
Even though The Parky demon is now running by my side
From you Parky I will not hide
Although now I often shed a tear he is too near–far too near.
I read a short story once , it wasnt signed
Cant remember where i read it but it goes like this
A child was in hospital after having both his or her hands removed due to an accident
A Doctor asked how she / he feels ?
She / he replied
"its not how i feel Its what i can still hold in my arms
I have no hands to feel with but i still feel love and loved
Why is it the wisest words come from children
Their innocence is pure
I remember growing up and Adults would say that
Children should be seen and not heard
Now im an adult with children
I NOW think this:-
If children were listened to more often and heard what they had to say
Maybe the world would NOT be in the state it is now
Children do not see hate , colour , race or religion
They see only people
My boys may not change the world
But they did change me
and for that i thank them
My two year old grandson Leo keeps me sane and away from the abyss.