conflicting information about Parkinsons Diseae

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Many professionals and the charity PD uk sat thata you do not die of PD you die with it...BUT The world Health Organisation recieve statistica from the UK about the Number of Deaths Caused By PD in the UK...PD is one of the leading causes of deaths in the UK... I haved PD and suffer from nxiety but it occurs to me on  a regular basis that the lacl of knowledge and information that is presented to us by a community of experts that all disagree is causing more confusion nor only for the sufferers of pd , the public also find the whole thing a non starter. It is an illness for which there are no clear up to date definition and is therefore just seenan old persons shaking complaint

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  • Posted

    My father who died at 63 in 1963 developed it when he was about 45. He actually died of pneumonia but he was quite weak at the time and there was a winter virus going round that had hit most of the family.

    I don't know how much treatment has improved since then. He had a brain operation that initially stopped the tremors and improved his mobility but the effect was not long lasting.

    Later he was prescribed Dopamine? that also initially helped but later caused him to have hallucinations. 

    I had a distant relative with it and she certainly died of old age when in her 80's. 

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    • Posted

      I think we should be named the lost tribe Derek...Parkinson's was identified and named 200yrs ago. There is still no treatment for it, the treatment is only for the symptoms of the disease...and they have not changed much in 50yrs. It is daft when you get a womans son on the same meds her father was on 50yrs ago and struggling with the same side effects. On top of that there are official statistics about the number of deaths caused by PD but many of the people working in the field of PD will not aggree that PD can be fatal...How do you get a situation where, one of the symptoms of the disease that you are suffering from causes confusion and the profeessionals that you are dealing  with make the confusion worse. How can they say that PD is one of the leading causes of death in this country and then say that you do not die from it....But this is only an example of the mess of it all...We are kept very quiet by the fact that we cannot be heard in a society that only accepts leaflets from professional bodies and big charities. They seem to be a closed shop . I tried to get some support from mind but they just referred me back to PDUK and PD UK are set in there ways i have tried to reason with them to no avail
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    • Posted

      My father was a fighter and always went out even to football matches until quite late on. He worked as a post office sorter until he was 60 but they did 'carry 'him. Nowadays they wouldn't.

      His mind was alert until he was on dopomine. I don't know if much is known about the cause of it. Initially our family blamed it on Spanish Flu in 1918 that my father was the only one to get. Around 40 and not long before he had symptoms he had a fit but only once.

      They seem to classify it like prostate cancer in that more men die with it than from it.

      Perhaps Billy Connelly will get the disease more publicity.

       

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    • Posted

      Thank you Derek, it is very kind of you to respond... In the PD community we call ourselves , 'warriors of PD', simply because we do not want to be seen as victims of it. Your dad sounds like a good warrior. I am a bit like a dog with a bone with this one, i am determined to get some answers, the medical profession seem to have turnes into politicians, you cannot get a straight answer from them and when you do you get 2 conflicting ones.  PD affects the whole body and it makes any weakness you may have much greater than it would be in the absence of PD. Personally I find it quite insulting to say that we die of complication of  pd in the form of choking, aspiration pneumonia etc many other diseases caused by Pd. I was killed by the Lion not it cub I will hvave on my gravestone... The professonals are really trying iy on with this one...It seems to me like they say ,,, "shut up and go and play  we will do all the talking you say all the wrong things" thats th emessage i get anyway...

       

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