Tomorrow snow permitting, I will be Interrogated by the kindly staff of my local Hospital, not all of them you understand, but I hope as many as possible will attend and if all goes well perhaps more will wish to learn of the horrors of PD ,I have participated in these very interesting talks before and find them very rewarding and after each session I feel I have given Parky a kick up the backside whilst passing on Information to the young Professionals enabling them to help and understand the PD Patients in their care. Its not often I get the chance to do this and I am really looking forward to it, they can ask any questions they wish and I will summon up my sixteen Brain cells and attempt to give answers worthy of the privilege bestowed upon me, wish me luck. Fed
Thank you Valerie,as I mentioned heavy snow is forecast for my homeland so I hope It goes ahead,the Hospital are sending a taxi to pick me up and return and nowt stops a taxi, if the world was totally destroyed by a Nuclear War, Taxis would still be plying their trade.I will have to go and finish the shave I started yesterday, I had to stop as I was having greyouts so I have been walking around with half a beard looking a right plonker. Thanks Val Fedexx
What a great idea Fedex! Good luck with it! One of the main ways medical professionals will improve care is by talking to us , the patients. How was it organised? I wouldn't mind doing a similar thing. Well done for improving the care of others!
Thank you dr johnnie, I basicly kept pestering the PD department and any other department,pleading weeping and wailing, even when undergoing the cameraoidoskomy last week I put my case, ,,the things you have to do eh. Must go now as my beloved does not like my half beard. Best Wishes Fed
Hello worrals,and All friends,well it worked like clockwork , it was a real treat passing on the vital insider information to the young future of the NHS these fine young men and women , I did shutdown slightly but stopped process with soluble Madopar , all in all a good day, though Iam tired . Kindest Regards fedex
Well done, sure it was greatly appreciated and I am sure these young professionals now have a better understanding. There is nothing better than listening to a patients first hand experience.
Thank you ,it was a very rewarding day, I did a trial run yesterday , going too bed late, 1.45am and getting up at 6.35am I take my drugs earlier so the Dopamine gets to work earlier this system seems to carry me through the bulk of the day however today I timed it wrong, or right depending upon how you look at it I began to shut down so I was able to exibit both on and off modes of PD and the change was very evident ,from the Educational viewpoint a valuble exercise,though I was feeling unwell but the backup soluble madopar saved me again as it has on many occasions. I have been Included in the Data base of volunteers and hope in the not too distant future I will once again be able to further the battle against old BLACKHEART and speed his obliteration, extermination vaporization extinction crushing the very atoms of the vile evil savage wicked cruel disease. As you can probably tell PD is not the flavor of my month. Fedex
Thanks for doing this for Parkinsons patients. One of the biggest problems is getting PWP's to volunteer for research and here you are fully occupied in looking after yourself, persisting until you get the chance to give medical students the lowdown on Parkinsons.
Hi fedex Good for you. I think one of the greatest problems that pd sufferers experience with ordinary medical staff, is the lack of knowledge (or interest!!) of pd. Sometime ago whilst having photographs taken for an eye problem, I was told to stop twitching, on telling the staff that I had pd, I was told that it was no excuse and to keep still. I think that incident sums up the general knowledge of the ordinary medical staff. On repeating this incident to my neuro, he said that educating nursing staff about pd was one of his greatest problems. Your lucky to be asked to give your experience to nursing staff. Keep up the good work. Chunky
ps had a similar time with 2 aussie med students - the girl was very bright, the boy was an idiot. great fun an hopefully two slightly enlightened doctors. or at least one.
Hello, chunky, turnip,Valerie,appologies for the late thankyou, As I mentioned in my post all went very well at NTGH on Friday, it was a real privilege , these students are the Doctors and Nurses who will be on the front line in a few years, all of them bright and Intelligent and eager to learn of my struggles with BLACKHEART, I would like to give a WARNING to all who read this post, I will raise a new topic to bring to attention the danger of accidently overdoing the madopar, so I wont continue here. Fedex
Hi fedexlike I've just had to turn the opportunity down double booked I'm afraid .you never know they may contact me again.although I don't feel that confident at the moment,or is it the pd wearing me down.as you can see from the time I posted this I don't sleep very good. This has been going on now for two months I need sleep at night.too many cramps everywhere and the head is dizzy ,hurting with the pressure of bells palsey I think I could have the palsey for the rest of my life.anywaybsorry about that I've got all the symptoms of pd plus bells so they probably thought I would be a good guinea pig Atb john
Hello potter64130, I am saddened to hear of your sleep problems I would give a kings ransom for a nice restfull night, and of course your pains wont help. In my case its night terrors and visions , truly horrific but I have been enduring them for so long the fear is subsiding, also it is good you giving your time educating the staff at your Hospital, It is vital the agonies and discomfort we suffer is brought into the open, well done sir. Fedex
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