my contribution to this forum is not a pleasant one and centers around the fitting and aftercare of a apomorphine pump,the highlights being .
supply problems.-unreturned phone calls pump brake downs-stress - overdose.There are other issues some more serious including misdiagnoses an threats at consultant level - a life saved and comments about the PKG monitor.
I can back it all up with paperwork, and is intended to give support to those who fight their corner.
If enough interest is generated l will let rip …
what is the link between pkg monitor and the pump s i,m waiting for monitor to e available grateful for any info await you,re reply shookup
Sorry to hear about you father,l hope l can help you, as you don’t say much about your situation.
The pump is for injecting (the infusion method) drugs , usually when oral medication has peaked.
The monitor as l understand it, records movement in relation to your medicine timing and is supposed to help your consultant to target your needs better, however if there is one thing Parkinson’s is well known for
is its fluctuating nature,need l say more.
hishook at present my balance is dreadful i,ve had few falls physio does,nt help hence monitor also have sleep problems at moment more worried about pip assessment in 2wks. started on cbd oil you can read on canabis oil
A warm welcome to the forum.
It sounds like you’ve had quite an awful ordeal with the fitting and aftercare of an apomorphine pump. In light of what you’ve described, I think you’d benefit from speaking to one of our advisers via our helpline. They’ll be able to offer you advice on the appropriate steps to take about raising a complaint regarding the problems you’ve highlighted should you wish to go down this route and can put you in contact with a Parkinson’s nurse to offer further support, especially as you mentioned a misdiagnosis being one of the serious issues to experienced.
You can contact them on 0808 800 0303.
Whilst I understand your frustrations regarding your ordeal, I strongly advise against you naming any medical professionals on the forum as this is against our forum rules.
Do keep us posted on this.
l may have to leave as l find it confusing but thanks for the advice.
kind regards -----shookup.
I’m really sorry you feel this way. Please let me know what you’re finding difficult on the forum and I’ll be more than happy to assist you.
Tommy Here I’ve just had a lightbulb moment about P.I.P assessment please let me run it by you and maybe get your valued opinion.
Firstly we assemble all the Parkinson patients, the disabled,mentally ill and stroke victims etc .
Then we transport them by train to a place where they can be assessed in huge numbers.
Like a platform for instance where a great number of(health Care professionals) are waiting in white coats just to look the part.
With loads of Small tables with two seats one for the patient after all we are not barbarians.
Where examination’s will be carried out and patients directed to the appropriate area.
OH WAIT A MINUTE I THINK THIS HAS BEEN DONE BEFORE.
IT DIDN’T TURN OUT TOO GOOD.
Oh well back to the drawing board …Tommy
hi Reah .
ok l will give it another go, please place this poem in the correct place and l will observe.
Smoke and fire drift o’er the field as cannon still their deadly yeild, no trench escaped the reapers mark.
Glasses pressed to his eye , the general counts the do or die, “we will have to go again was heard his bark”.
A mothers son who’s life is spent lie’s sprawling where the earth is rent, his chest agape that once was filled with pride.
He’d sallied forth without a flinch, neither friend or foe advanced an inch, “home for christmas"the politicions lied.
Parents, sweetheart by the gate, the postman ends their anxious wait, “he was a hero you should be feeling proud”.
Embraced, their eyes fill up with sadness, a life cut short by mankinds madness, “curse king and country” father cryed out loud
With tender hearts thy’d viewed his room, the door e’er closed to man and groom ,mother whispers"son l will return”.
Alone in melachoy mood his cowboy gun is first toy viewed and cryes"oh! god will mankind ever learn".
Her anger thrust to the fore she cast the weapon to the floor, her mind aflame with sentiment and wrath.
And vows with grim determination it will ne’er again fruit inspiration, the coming years trod not an easey path.
Widowed days passed with pain, partners heart had failed the strain, her twilght years alone was now her fate.
No grandchild came to play or scream, a suckled breast her only dream oft prompted by the pictures o’or the grate.,
But no matter how the die is cast, rough or smooth it does not last and mothers hourglass
passed its final grain.
Undiscovered for a while, she still bore whitness to a smile, perhaps they are a family once again.