D day


#1
:sunglasses:
Hello Everyone, apologies for the lack of activity but I have been in Hospital testing the DD Device, I will say more later as friends arrived.
Nice to be back, FedEx.:grin:

#2
:grin:
Sorry about that, I went into NTGH last Monday to begin testing, I had been so Ill in the previous few days hence the lack of communication, and was looking forward to the tests with view to Improvement . Monday nothing much happened , paperwork and the usual hiccups. Tuesday tubes inserted up my nose to transport the Levadopa to my small intestine,this produced a very unpleasant partial shutdown with all the negatives it creates, I buckled and told everyone that would listen I had changed my mind and would not go through with it, the OP that is.:frowning:my mentor was very calm and explained all the consequences of my actions but also explained that it was entirely my choice and could walk away from the whole process any time. I was in no mans land, a very tiny spark in my thick skull still burned ,but my enthusiasm was gone I wanted to run and hide.
Then later that day my consultant popped her head round the door and told me in
terms which were straight to the point that If I lost this opportunity it would be unlikely the chance for a better quality of life would present itself any time soon, I had calmed down by then and thankfully Mr Sensible reasserted himself and
well to cut a long story, I am at home now ,returning to the fray on Sunday, the
process will be carried out on Monday D DAYMK2 this will install Duodopa , perhaps I should mention the DDPump is fitted and working via my nose and is producing amazing results I have no shutdowns I can walk talk eat think and do all
sorts of things previously denied to me or taken away:grin:I have to be cautious obviously and I know it wont cure PD but at least I have put old BLACKHEART under control, and long may it last. I will send progress reports to this forum each day for the next week or two enabling a more informative picture
but so far so extremely good. Before I close, I wont mention any names as this is not correct protocol , however, to a very special lady from Birmingham, to all my
truly Excellent friends for that's what they are based in Jubilee NTGH who have
stuck by me despite my selfish behavior ,for which I sincerely apologise and to all the staff on Ward3 NTGH who cared for me if you read this ,Thankyou you have
shown a kindness to me that will never be forgotten.
Fedexlike

#3
Sound pretty good Fed, I'm sure most of us would have reacted just as you did, it's the bodys natural reaction to fight or flight. You did well to remain there and go through with it. Good luck for the next proceedure, I look forward to the next episode. Take care my friend

glenchass

#4
Hi Fed, Just to say we all love you and hope everything goes well. Love Blue Angel x

#5
Hi Fed
All my good wishes for Monday. Will be thinking of you.
Love Worrals :smile:

#6
hi fedex,

hope everything goes well, can i ask have tried the apomorphine pump and if yes what did you think my consultant wants me to give it a try not sure if i want to or not they said i have complex pd, anyway good luck for monday sue.

#7
:grin:
Good Morning, glenchass blue angel worrals and lilly, thank you for your kind words , I returned home yesterday feeling a bit raw, I am sorry for not doing a regular update as promised, but for various reasons it was not possible.
The Duodopa is working well and is truly life changing, there is even a possibility I cold get my driving licence back that's how good this thing is.
The staff at NTGH were their usual excellent selves and treated me with total kindness and compassion, one little lady from Birmingham stands out however, she
devoted herself to guiding me through what was at times a very high stress environment and stood by me resolutely when problems occurred, thankyou R
I am going to walk up to my Mums now something I have not been capable of achieving for two years.
Lilly I have not tried the Amorphine, I was told it would not be suitable for my Brand of Parky, but I can certainly recommend Duodopa,It has been worth the turmoil and stress to be granted this opportunity.Thanks again to all my friends at NTGH, you were as usual THE BEST.
Kindest Regards Fedex:grin::grin::sunglasses::smile::wink::grin:

#8
Hello Fed,

Lovely to hear you are doing so well, steady with the walking don't try to run just yet.
A really great day for you and hope for others.
best wishes
vivian

#9
Hello Lilly,

My husband was on apo for fifteen years and it enabled him to lead a much fuller life so if you want to make the best of life give it a go you can always come off.
best wishes
vivian

#10
:grin:
Hi Fed

So glad to hear that all went well and that it has made such a difference already.
Worrals xx
:smile:

#11
Hello Fed, lovley to hear that things went well, you sound really positive. Please keep us updated.

regards
glenchass

#12
:grin:
Hello All , just a short post, Everything is going well with the Ddopa , am encountering troubles through the night after pump removal, but these are just teething troubles and I shall overcome, I cannot praise enough the kindest of kind
people who made this happen for me,it has transformed my entire outlook and made FedEx a very happy boy, instead of Jack a very dull boy, sorry a bit of silliness
creeping in there. I am going to give another talk to the young student doctors on Friday and no doubt they will be curious about DD and as a result of my much improved mental state I am really looking forward to chatting to these excellent:sunglasses: well I must go now as beloved is bullying me at the moment and insisting I get plenty of sleep, This is FedEx at 1152pm singing off.
Kindest Regards to All Fed:grin:

#13
excellent news.

#14
Good to hear you sounding so chipper Fed:grin:
Worrals xx

#15
Well done fedexlike for going through with having the pump fitted . I hope you will continue to see the improvement .

How lovely to have some good news as far as treatment is concerned .

Keep posting so that we can follow you ,

#16
[::::]
Once again I feel humbled by the support and encouragement I receive from my great friends on this forum, you have kept me afloat when I have been sinking fast
and for that I will be forever.grateful Vivian you are right in telling me to ease off a little, I am a bit like a kid in a toyshop at this time, my mobility is getting better every day "I used to be cruel to my woman and kept her apart from the things that she loved, now I am fine I am changing my mind and I am doing
the best that I can" SORRY SORRY do any of you remember these Lyrics from a famous Album from arguably the best band ever,as you can probably tell I am in a good frame of mind now , DD has also chased away the black depression I AM A DIFFERENT PERSON NOW I only wish all of you could be given DD it is a miracle, I am off to play my favourite music now, once again for all your kindness.
Fed

#17
definitely the best song writers ever, by a long shot, but i thing led zeplin were the best musicians.
i am sure i speak for a lot of people when i say we are overjoyed at your results, even if partly for the selfish reasons that we know there is hope after levadopa tablets.

its a pleasure knowing you.


all the best
t

#18
Hi Fed, it is great to hear that things are good and you sound so upbeat. If only we could all use the dd it would be great but sadly I for one cannot tolerate it. Once again well done and do take it easy, as Viv quite rightly told you earlier

glenchass

#19
:grin:
Morning, I think I would slightly agree with you turnip as Led Zeppelin were probably one of the more creative of the Heavy Metal groups , I also like ELO
another brilliant band, I find strangely enough that I am enjoying my music more since the DD my appreciation of music poetry art indeed anything creative is being
reawakened my intellect seems to be expanding into fields never before considered
this is good I am overjoyed.
Kindest Regards FED :grin::sunglasses::smile::wink:

#20
Will look forward to seeing u on TOP OF THE POPS ! Keep it up .