Adapted from the words of Winston Churchill.
Parkinson’s disease is “a riddle wrapped in a mystery inside an enigma”. Its affect on me, the way it separates my mind from my body, means “the stations of uncensored expression are closing down; the lights are going out; but there is still time for those to whom freedom…means something, to consult together. Let me, then, speak in truth and earnestness while time remains”.
The Parkinson’s dictatorship forms a “society where I may not speak my mind, where my body denounces” and denies my mind. Parkinson’s can only “go forward; he cannot go back”; he must “blood his hounds” and then both of us will be “devoured by them”.
We must say “No” to this! “There, in one single word, is the resolve which the forces of freedom and progress, of tolerance and good will, should take”. We must “banish from all our lives the fear which already darkens the sunlight”.
“We have before us an ordeal of the most grievous kind. We have before us many long years of toil and struggle”. In response to this “I have nothing to offer but blood, toil, tears and sweat”. So, “whatever the cost may be, we shall fight Parkinson’s on the beaches, we shall fight on the landing grounds, we shall fight in the fields and in the streets, we shall fight in the hills; we shall never surrender!”
“Today I may say aloud before an awe-struck world, 'I am still master of my fate. I am still captain of my soul”. This is thanks to the support of the special “few”; my family and friends; “Never in the field of human conflict was so much owed”.
Parkinson’s has “received back again that measure of fire and steel which it has so often meted out to me. Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning" of coming to terms with this disease.
Hello dr johnny
I understand you are considering the Duodopa system, if you are given the opportunity grab it with both hands it has changed my life massively for the better, in fact I could not get through the day without it . When the operation is explained to you it might cause alarm, when it was first suggested to me alarm bells went off and I stubbornly resisted the well meant Consultant , Nurse Specialist Nurse Consultant and any one else trying to help me, what a prat I must have seemed to these most excellent of people , any way I am rambling, I finally accepted and had to stay in NTGH for about a week, this was to allow tests ,making sure I was a suitable recipient , I was and the following day I had the operation to say that it is life changing is a understatement , its not without its difficulties until you get the hang of it but having read your many and varied posts you have the capacity to take on this challenge and win I know it. It was last March when I was fitted with the device, it immediately erased 85% -95% of the most serious aspects of PD I could walk upright my speech was clear and not slurred my mood swings were gone bladder and bowel problems eliminated in short it was a big event in old feds life and you should take the chance you will benefit believe me. Now I will explain about the slightly negative side, well there are not many but you will encounter them until you become used to it there will still be the odd shutdown, but there is a boost button which you can use to pump extra jet fuel into your small intestine , this is rapidly effective and in my case I am up to speed again in about 10 mins , also its a bit unwieldy and clumsy , you have to take care as its easy to catch the tube on obstacles. I must excuse myself for a short while as I have a visitor.
Sorry about that by coincidence it was my DD Cassetes and syringes batteries etc ,all free by the way, they are delivered at regular intervals to make sure I am always stocked up, . You may find that having DD is a bit of a culture shock and a bit of a pain in the a,,e at times ,I have been adjusting to it since March and I am reaching a good place now, I can deal with all the functions my self quite easily or my OH will chip in if I am having a bit of a hard time, you mentioned that you live alone and this is the only bit that worries me as sometimes when I wake up I am very slow and my wife has to fit the pump for me ,this may not trouble you but it has proved to problematical at time, you may be able to get the district nurse to drop in and make sure you are managing ok, also when discussing DD with your consultant ask about taking slow release capsules to take when you go to bed, I am using at present 1 1.25 Madopar slow release and it keeps me mobile through until breakfast, to sum up its all about management, and fine tuning the device to suit your brand of PD once optimised you will wing it, there is just one more thing the Little Lady My Mentor,throughout, who came all the way from Birmingham on the train in a blizzard , she came all the way to Northumberland to explain the ins and outs of Ddopa I know I cant mention names as certain individuals read this , suffice to say she was a angel standing by me throughout all the proceedings and often bullying me into line when my natural stubborness began to cause uncertainty, but the work ethic of this priceless individual could not be faulted you will recieve the same kindness and compassion johnny, GO FOR IT it will give you back the things BLACKHEART has taken away.
Good luck old friend, and do contact me privately if there is any way I can help Kindest Regards Fed
