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My Parkinson's Journey Blog 1

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Helenl

Hi already put a comment on but don't know where it is ! I'm a newly retired staff nurse and diagnosed in June and struggling! 

Prof.

Sorry to hear that you are struggling, I don't know what you are doing to cope with this dreadful disease, but I have found that writing and chatting to people about it helps me to cope with it.

take care

Prof.

Helenl

Thanks for Your reply ,I can sympathise with the mood swings you described in your introduction. My physical  symptoms are mild but I am suffering from a lot  of the non motor symptoms of parkinsons and am terrified I will develop dementia.I have good support from my family but you can't beat speaking to someone who has this terrible disease. Interested to note that you are Thai,  I regularly go for Thai massage with a young Thai girl recently come to England and this does help with my stiffness in limbs. 

Have a good day and hope to speak again.

Helen 

peterc

hi Helen so sorry to hear your struggling .have you got a designated parkinsons nurse if you have don,t be afraid to use their knowledge i cant speak highly enough of the 2 i,ve had good luck

Helenl

Hi Peter , yeah I have a parkinsons nurse  and as you say they are excellent, problem is I have read extensively on internet and scared  myself  worried I have lewy body dementia which has similar symptoms to parkinsons. Hope you are OK. 

peterc

hi Helen i know it can be scary but i am 9th member of my family to have parkinsons over 3 generations all have had different symptoms dad has v.recently passed away at 87 while his sister was 81 when she died so try to stay posative and don.t get to down

daffy

Hi Helenl

I was diagnosed spring 2016. I had suspected PD for sometime but it was still a huge shock. Lots of mental and physical adjustments to make.

I started by reading up as much as I could and frightened myself half to death. Mohammed Ali died shortly after and the papers were full of it. Couldn't sleep for thinking about PD and what might happen in the future.

Then someone reminded me no one could predict my health future. For a while I stopped reading anything about PD. Then gradually started reading selectively - never before bedtime.

I'm only just beginning to "get my head round it". I still have wobbles about it - last year I panicked assuming I was incontinent before realising it was only my hot water bottle leaking! I can smile about it now, but I have never mentioned the incident to anyone else before.. It disturbed me so much I couldn't sleep for the rest of that night.

I still have gloomy times. But life is good. There's a lot of things I want to do yet and these days I think "what the hell - lets give it a go" when faced with a new opportunity. I am a 64 year old granny by the way!

wishing you well Daffy

Helenl

Hi Daffy , thanks for your uplifting reply , I'm 55 and was diagnosed in June 2017 after having strange symptoms for a couple of years including mild hallucinations when wake up in the night so terrified I have lewy body dementia as hallucinations are a hallmark of it , my neurologist is aware and says the hallucinations in lbd are strong and vivid not what I'm describing and his diagnosis is early parkinsons . I have read in depth that hallucinations in early parkinsons are rare and a predictor of future dementia in wasn't on parkinsons drugs either ,on rasagiline now.Anyway your right nobody can predict our future health with or without parkinsons. Good to chat and thanks.

Helenl

Thanks for that Peter apparently everyone's parkinsons symptoms are different and my neurologist says we will treat symptoms when and if they appear , I've had mri scan which was normal but dopamine transporter scan abnormal confirming diagnosis of parkinsonism 

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