The visit


#1
:grin:
This is probably ,knowing I am 62, the most controversial decision of my life
a Lady travelled from Birmingham to my home in Northumberland especially to see
me, the reason for her visit, Duodopa,,I have been given the chance to test
drive this new system and evaluate its effect on my quality of life, hopefully
the device will offer me the break I have longed for during the last 11yrs.
Its not simple,and for this 62 year old with a damaged brain,it will be a steep
learning curve, but I have to try, try to master the complexities of this new
technology and pass on the resulting DATA to the small team taking care of me
while in NTGH and overseeing my efforts when I return home ,to say I am worried
frightened yes I am, terrified it wont work ,scared stiff whenever I enter
the Hospital I know so well,but I have to push on I will of course keep you all
up to date and will post details right here on this forum ,or look at it this way (Old Fed from his Hospital bed will keep you all UPDA TED) sorry about that I
just felt the need to be silly:grin:

#2
Hi there Fed.
You say you just wanted to be a bit silly. Your being exactly the opposite to that matey. Good luck to you and I hope that it goes great with you. There are lots of us here on the forum who are eagerly awaiting you step by step reports on the procedure. I am glad you are going for it and hope its ok - who knows ? It might be the start of a cure for this black hearted disease.
Chin up mate
Regards
Chunky:grin:

#3
Dear Fed, Just to say, "Good Luck". Hope all goes well. I will be thinking of you.Love Blue Angel x

#4
I do hope things go brilliantly for you. You give so much in sharing how you feel. I will be thinking of you. With all best wishes to you and your family.

#5
Thankyou all, I hope my resolve will match your faith in me, it feels like my
very first day at school terrifying I remember thinking then, I must do this and
my thoughts are identical, that was 57yrs ago 2.o8am cant sleep.
Fedex

#6
Hi, I can't sleep either. Someone recommended a book on 'mindfulness'. It's a kind of meditation, it's to do with the way we 'look' at things. I'll put the names of the authors on tomorrow. If you google it , you will get some information. Best wishes:smile:

#7
Thank you Valerie, I will try anything for a good nights sleep, I received a call
today from the teaching facility at the hospital where I seem to be spending
more and more time,they want to involve me in a program educating students who have a Interest in the trials and tribulations of living with our unwelcome guest
Parky, I really enjoy it as I feel I am hitting back, so I will let you all know
how it goes,once again I thank you all for your support .
fedex

#8
Hi fed, the book is called 'Mindfulness' by mark Williams and Danny penman. I bought it on amazon where it was cheaper. You get a cd, today I did the first meditation which is 8 minutes, you are supposed to do it twice a day. It was suggested at our local branch by a parkinsons nurse, she was reading it for herself. Best wishes

#9
:grin:
Thankyou for that information Valerie its just what I need right now, I am about
to go into the wreckage of my workshop to see if I can salvage anything ,things that have not been turned to ash are badly water damaged, one of my best efforts
a McDonaldDouglas F4 Phantom won first prize in a local modelers society competition 33 yrs ago is now a misshapen blackened lump of plastic, that Aircraft
held so many happy memories for me, I constructed it whilst going through a painful divorce, I painted it on the day I won custody of my two Daughters, and met my future wife at the Model Exibition where I won overall first prize, so you
see even a Model Aircraft of 33yrs vintage, burnt to a frazzle can bring a tear.
Kindest Regards Fedex:disappointed:

#10
Hi Fed

To reassure you I hope x The Lady(Duadopa Nurse) will be your angel when you enter the NHS system ; well o/h 's was.
They each cover a huge area of the UK and NI not being many of them you will prob have the same one that o/h had.
They stay in a local hotel near to the hospital and support you through the whole process, i know it will not take away your anxiety but hope it will help in some way.
Did you read my answer to your post on the treatment thread, and you should have our email address that PM you a while ago if you wanted first hand info on what it is like please email .

Best Wishes x

#11
:grin:
Hello Bubblex
Yes they are a small team, and if the lady who came to my home in
Northumberlan

+d is reading this, thank you for travelling from your home in
Birmingham in the train in a blizzard, thankyou for coming all that way to ease
my fears ,,my initial instincts were to run and hide, but this lady plus my
excellent Senior Nurse Consultant, who is also my much respected dear friend are
perfectly suited to the career they have chosen I know I will be meticulously
taken care of by the team at NTGH during the 10 day stay. My fears are no more
I need Duodopa to give me a better life and I will try harder than a large
Granite Block, harder than Tungsten harder even than Diamond, harder much much
harder than keeping my mouth shut when beloved is Driving our little Yaris.
thanks again for the heads up Bubblex
Fed

#12
Bless you Fed you do make me smile, as they say in the face of adversity 'smile' :grin:

hope this makes you smile, our little granddaughter thought Bampy looked like Peppa Pig's Daddy (don't know his name) when he had nasal tube for Duadopa trial wasn't the tube but the thick Pink Plaster ,

Sorry not sure if you will know who Peppa Pig is.

Seriously though we also both feel very lucky to be supported by excellent PD professionals as aware it is a post code lottery which is totally unjust.

Take Care xx

#13
:grin:
Hello Bubble x, I agree it is a postcode lottery and that's another thing that
makes me feel guilty ,I am torn so many ways but ultimately I have to do this
the whole Duodopa system needs to be refined and fine tuned, it needs to be less
intrusive , less awkward, and easier for the user and carers to master and this
can only be done , ,well by trial and error, the age old method of optimizing any
operating system or function, Guinea Pig is a term often used and those of us
privileged enough to be chosen for Duodopa are Pioneering this comparatively new
device,and will contribute as the years roll by to its refinement, I still feel
guilty though.
Kindest Regards fedex:grin:

#14
Hi Fed
Do not feel any guilt about having the chance to try this new treatment. Rather you should feel proud that your actions are helping to perfect something that with luck will help all pd sufferers. Well done lucky old you. Keep up the good work and keep giving us updates as you go on.
Cheers
Chunky

#15
:grin:
Thank you chunky I value your thoughts and opinions, as I do all my friends on
this forum, on a entirely different tack ,has anyone noticed the very hugely
excellent feeling you get after !!!!!! no not that, after a really good laugh,
I have just been watching the antics of cats and dogs in fact all species of
animals interacting through play on you tube, I was helpless laughing, my
Daughters two dogs also are hilarious to watch when at mad half hour time, little
Betty is a Choodle and Jasper a pedigree Boxer, it cheers me like a very large
packet of cheerfull things, fantastic. A bit silliness there.
Thanks again chunky and Kindest Regards to all. Fed:grin: