Insomnia

A nice little story for you
In 2004 I had cancer.
Sue’s brother in law gave me a lift to the Churchill hospital in Oxford.
In the restaurant there is a grand piano and on it was a sign that said .
Please feel free to play but only if you can.
So I was getting the coffee and I heard this fantastic classical music followed by some jazz and blues and finished with great balls of fire.

And all these people broke into applause including some patients with chemo stands with them.

It’s still a beautiful memory.

That’s one of those moments in life to look back on Tommy.

Did you go through chemo Tommy? My other half back then went through a few months of it in 2010 at Barts. She was very poorly with it, don’t think I’d ever seen anybody with as many drips as she used to have to endure. It was a shame she had to go through all that as ultimately she lost her fight in 2011.

Sorry to hear that Roy
Didn’t mean to stir memories.

No chemo for me Roy
I had been misdiagnosed 6 months previously and when I showed up for a little op the consultant changed his mind stating that it didn’t seem to be what he thought it was.

So referred to Churchill hospital and the doctor who took the biopsy said " if this has spread there will be no treatment apart from palliative care for you."
Just as matter of fact like that.
Anyway after two operations and five years of scans looking for a recurrence I was given the all clear.

Rita’s oncologist was brusque to the point of rudeness, there were times when I could happily have chinned the little tit &, ultimately, he did things wrong.

My consultant was trying to encourage me to sue the doctor who originally misdiagnosed me.
But I would never sue the NHS on moral grounds as I don’t believe any doctor intentionally does that .
They go on what they believe at the moment.

However when I went to my GP after a pharmacy told me not to ignore the tremor.
I was raging at the six month wait again stating to them that I’d had a sarcoma removed and two years later another op to cut some bone tumor off .
And that I could be growing a monster in the brain.

At that point I was told the computer say’s no.
And there was no sarcoma
I suspected some sort of cover up .
So I produced the consent forms for both operations which stated excise sarcoma which of course was after the biopsy.
However I still would never take the NHS to court even if I was homeless.
But I did tell them I’m very angry at being made to look an idiot.

It’s a lottery who you can see at my practice. There was one who was genuinely caring but referred me to a physio & a musculoskeletal specialist before I finally convinced him that I needed to see a neurologist, took about three years.

Have you seen the Maybe Diagnosis thread.
There’s a person on there who was diagnosed in 2007 with PD
But last year the neurologist was changed and so was the diagnosis .
When the patient in question asked “what have I got then”
They were told I don’t know but if I saw it in anyone else I would say PD but not you.

Now how vague can you get?

I have a little theory on this and you can Google this.
In 2017 Parkinson’s UK won a case against the government not to have Parkinson’s patients re-assessed because this condition is degenerative and will not improve.

So therefore as government do not like losing I believe and stress that it’s only a theory
that they have gone down the NHS route and have somehow got them to make vague even obtuse diagnosis.
Also I googled my new neurologist and he is only taking the state’s shillings as an advisor to the DWP as well as his NHS and private work.

Do I sound paranoid?

Not at all, they seem to base a lot of their diagnosis on whether or not you respond to PD drugs, it all seems a bit sketchy to be honest. I think I’m better with the pills but is that a placebo effect? How would I be without them?

I think you could probably diagnose it easier .
If I could I would send you a video my physio made of me
and then I could tell them it’s fine I’ve got a private diagnosis .

On a lighter note I have an attractive young lady popping over for dinner tomorrow night… it’s ok, it’s Lesley’s daughter :slight_smile:

Still no news on babs I, m guessing neither of you have heard anything off to bed shortly cleaning tank and plants tomorrow been persuade to have another go by mam and my mate if you do hear from babs please let me know and I will do the same

You can count on it
When we know you’ll know

YNWA

I’m not after your number promise!
But I know Kieth has it so I’ll get him to forward my disabled frame and you can professionally sort me out with a diagnosis.lol

You’re welcome to my number Tommy, yeah, I’ll have a punt

You’re very trim Tommy, I’m jealous. Couldn’t hear your knee joints go off like pistol shots when you stood up, maybe that’s just cos I’m a fat b*****d

What’s your verdict on the tremor.
Three years I’ve been doing that.

Looks very similar to the one I have in my right arm. I expect the leg doesn’t always do what you’re expecting it to do sometimes?

Well Good Morning my friends and thanks very much for caring.

I M not doing too well as I’ve fractured 4 of the main. Bones in my foot. I have been told not to weight bare until next Wednesday and then they will decide what happens next. It is impossible for me to use crutches as I have no upper body strength and also can’t use my right hand as I wait for surgery for that.

I tried yesterday to move and fell over on both occasions as my balance is so bad with the parkinson’s.

I have slept on the couch the last 2 nights as my bedroom is upstairs.

I have to have my leg upright with cushions underneath.
Any advise would be greatly appreciated as I feel so down in. The dumps.

I was thinking today to try and bum up the two sets of stairs each set has 7 stairs which makes 14 stairs up to my room. But I still have to get out the living room.???

Any ideas please say.???

Thanks for being there it is so appreciated. Peter Mam, Tommy and Roy.

Babsx x x I also got a lovely message from Keith so thanks. X

Oh bless you Babswood
I wish I could help you .
But eventually we all find a way round the mobility issues.
I hope if you get upstairs that there is a bathroom up there as it could end up being another problem.

Also I know you’re not old but
age UK help people over 50 and at least down here very helpful.

Big virtual hugs to you and Phil
From
Tommy & Soo and Sammy too.

So sorry to hear your news Babs x

Is there any way you can make up a bed downstairs?