Thank you for your kind words.
Farmers wife,
Sorry FW forgot to say this yes great when you can identify a problem and find a solution but I do realise we all have good and bad days . aware I.sounded a bit 'jolly hockey sticks'!
Positive Thinking goes hand in hand with a few outbursts of anger, fear, frustration and a good old moan. Nobody is superhuman.
Keep posting
Hi Farmers wife, TeeHee
Agreed this PD lark isn't at all easy. For a start there's no let up. It's a struggle to be positive sometimes and a good moan now and then is a bit of a relief valve for me too. But I certainly didn't think you were being all jolly hockey sticks TeeHee because you were speaking from experience. D
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Here's some fortitude in a capsule:
It help me avoid depressive moods.
But it will take few weeks after starting 4000 IU per day to have an effect.
D3 may well be of benefit in PD too. A lot of cell/molecular biology points to that.
Peter
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Hi
I frequently feel like an utter failure in terms of my management of PD. I can't live up to the ideal of facing the future with endless positivity and in spite of my best efforts, I continue to resent being told how to feel and even worse, being judged on my attitude and approach to PD. I am angry, if I'm honest, that the message, as I interpret it, is that if only I ate sensibly and smiled relentlessly I could live life to the full and therefore if I do not have a great life with PD, it is my own fault for not trying hard enough. And when I admit this, I feel even worse. But this is tonight and tomorrow is another day and it will all feel better and I'll feel bad for writing this... So apologies in advance :-S Jxx
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Hi bad sheepy,
Long time no bleet....oh my my pal (hope ewe don't mind the presumption or assumption we are pals but soft spot for some on here, like daffy aka hattie...well pd management , hell no such thing , ? Well not on an everyday basis anyway..sometimes happy sometimes sad nobody can be the master/mistress of pd everyday , it is not possible.
Veneer, my dear thats what it is , I fluctuate so much my name should be Helter Skelter, romllp roller ! Coaster, jnew I shoukd not have drunk a whole bottle of wine but feel ok, managed ok the prawn chow mein was fab and if I squint my eyes up, I look fab..
D2 good for you gal and omega 3 etc but thats just people trying to assist share a tip not telling you, you are useless and should not graze on this earth. you are honest and amusing from the posts you post, good on you , but failure no way , since when has being the daily burst of sunshine been a positive, everyone needs a change, seasons of the year, etc blah blah yep i get what u mean sometimes joing in with life makes u feel worse sometimes better. I echo the bit with friends etc etc it is difficult navigating a way through it all as its always changing....i changed dr or movement specialist for a number of reasons but the finalblow wss
Me "i like to mix my poisons "
Dr " 
i dont like you saying that, it is a negative response to the help these drugs are providing"
Mmm, patronising and all the rest of it.
Try not to be so hard on yourself sheepy as I am not sure how you can be bad or good at pd management, you just have good and bad times. It not a fair comparison we can all be happy for the 10 mins we write a post but there are 23 hrs and 50 mins of that day left.
I really wish i could say somethjng to cheer you up, make you even put a happy spell on you and send you into a cosy restful sleep because my days of a white witch are diminishing fast need more tongue in cheek books on the subject used to love to bury a stone to find true love, visit the nine ladies a stone monument at midnight. But Alas I am a failed sorry not so highly skilled as a WW as i'd like to have become, more WI now.
Keep bleeting, sheepy we think you are Fab, you are brilliant in your honesty and I like yer, so get your coat sheared and get back out there, as you or ewe xxxxxxxx
Hi Tee Hee,
Yup, the mood swings are tricky for sure. I'm constantly trying to figure out if I'm being irrational and over sensitive or am justifiably upset (who knows - depends which version of me I ask :-).
I've been practising restraint in respect of posting and sending my midnight witterings (emails, forums... you name it) but I clearly failed last night .. better, however, than sending them to my line managers and the HR dept (still, there's not really anything to hide because I've already emailed my thoughts to everybody).
Anyway, your replies are always appreciated; I love the humanity and perception and wit - especially after wine! My sister isn't going to let any references to bleating go any time soon (I deserve it to be fair).
My new mission is to moan less and definitely not hit the send button until it's daylight (though I've already decided that this will be easier in June than January just in case I crash and burn)
I hope things are as ok as they can be.
Wine and chow mein - my stomach hurts at the thought; I had to admit defeat with the wine when I kept falling asleep at events .... cinema, theatre, pub - give me wine and I get slushy then sleep - truly great company :-/)
Take care.
J x
Hi All, I’m currently at the starting of getting rid of being negative an negative thoughts that I’ve allowed to take over my life, which was never me…I’ve just come out of hospital which have been in for nearly 1 month, having Apo pump fitted…Here my first morning at home having not had much sleep but it’s Saturday which means football ,an in between going spend my day chilling listening to good music an then maybe have few zzzzz anything that’s negative that comes my way I’m just going to sing it away…
Don’t worry be happy…
I honestly find it difficult to “think positively”. If only it was so simple.
This document describes best my approach…I wrote it.
I realise this is an old post but you are so right to highlight the emotional side of Parkinson’s.
We worked with Parkinson UK on a program called “First steps” (currently being rolled out nationally). The program is for newly diagnosed AND their families. It tries to prepare people for living with Parkinson’s.
Truth is only people with Parkinson’s can truely understand what it is like to live with Parkinson’s.
God Bless
Thinking positively however hard it is will help you. My mantra is always " it’s not what life throws at you but how you deal with it that makes the difference".
I know it’s hard but it works.
Hi,
I agree, only people with Parkinson’s can understand it and know what living with it is like.
Apathy, negativity and depression are, as you say, mighty opponents and I switch between ‘fighting the good fight’ and slumping on the sofa.
My slumping moments are usually followed by sending a negative and critical - but truly heartfelt - email to somebody which I later regret (sorry PDUK but you are my safety net; sending them to my boss or local MP is the alternative and you can guess how that ends :-S).
I live on my own; it has always been my preference but it can provide additional challenges when you have PD, though I’m pretty sure living with others also presents challenges.
I can now acknowledge that I have PD but I’m not sure I’ll ever truly accept it. I’m definitely a rabbit in the headlights type; I’d love to be a fighter (they are so much more popular) but I’m not. We all have a different approach and I guess the concept of ‘fighting it’ has never really worked for me; the odds are fairly damning: it’s going to win.
I am, however, working on bumbling along with it trying not to leave a wake of destruction behind me; I’m working on living with it I guess. Thank you for posting the article, it really does resonate. It’s good to gain an insight into how others with Parkinson’s make sense of it all and I truly agree that people without Parkinson’s have no idea of the size of the challenges presented by apathy and depression and medication side effects and mood swings and a decline in organisational skills and the constant battle to put the brakes on. Combine this with the challenges of everyday life and hormones and I have to admit that the inside of my head often feels like a Dali painting with the odd splash of Jackson Pollock thrown in for good measure. And where is the research or advice for women related to all things hormonal? It’s a massive challenge and a yet it seems to be a total non subject when I look for information or advice!
We need so much more support with emotional needs, we can’t just self-help it all better. And both people with Parkinson’s and any family and friends that they may have who are impacted by it need to be honest and not always wear the ‘We’re facing adversity with stoicism’ mask that the media so loves - the good old Victorian concept of the deserving poor and infirm. In these days of austerity it is all too easy for families to become ‘carers’ for some of us (sometimes understandably resentful about providing unpaid healthcare) and for those of us on our own to be perceived as society’s burdens, neither of which is an enviable position to be in.
And one last little rant, I think I’ve pressed the insert image button 10 times while trying to write this as it is perilously close to my on-screen keyboard microphone button for dictation. Could somebody please take on board how difficult using tech is when your hands have a life of their own. Technology is going to be the future so those of us with Parkinson’s and arthritis and multiple sclerosis and age (that one’s going to get pretty much everybody) and other conditions that I haven’t mentioned need a device that we can use before we can join in with the technological revolution.
Anyway, many thanks for the posts.
Jx
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I too suffer from Parkinson’s it it can be a very lonely journey as you do sometimes feel alone although I know people do care I sometimes have dreams that I am left stranded on my own and can’t find anyone anywhere Try to look at the positive side of life. I keep myself going ad much as I can even if it means having my nails done or having a new haircut. You are amazing. Don’t let Parkinson’s vet the better of you get the better of Parkinson’s and ignore people who dont understand that is their problem not yours . I wish you all the very best
Of course you hate it Jackson. Why wouldn’t you? It’s a hateful thing and not fair. Your life is not turning out as you expected and you don’t feel in control. You have every right to feel like this and to vent the feelings. And you have every right to tell your friends how you feel. If they know how you feel perhaps they can react better, or differently.
My husband has Parkinsons and it’s not fair for me either. I hate how he’s gone quiet and slow. I came on this forum to read because he doesn’t want to talk about it.
I hope you did feel better in the morning, but you have every right to say how you feel.
Jackson
god I so agree with you, I hate my PD with a passion, it has taken my job, my partner, my dignity, my confidence. LIke you I fear the future, hate the present and go to bed many nights wishing that I won’t wake up the next day. Im new to the forum and at a low point - struggling to claim benefits and my pension - I have never been so skint.
Hi @shakeyguy,
I am truly sorry that you are feeling this way, it sounds like Parkinson’s has taken its toll on you and that must be rough. Your fears about the future are completely understandable, however, let me reassure you that you are not alone. As well as the forum, we also have local groups that you can attend all over the UK where you can physically meet people in similar situations to yourself, this may help with lifting your spirits. You can find your nearest group here - https://www.parkinsons.org.uk/information-and-support/local-groups
Based on what you’ve described, it sounds like you may be going through some depression in which case; I would strongly advise you speak to your GP or Parkinson’s specialist as they may need to review your medication. Additionally, we have a lot of information on Parkinson’s and mental health on our website which includes the details of some useful contacts that can help you, please feel free to visit the page here - https://www.parkinsons.org.uk/information-and-support/parkinsons-and-mental-health.
Regarding your benefits and your pension, we have a team of knowledgeable advisers that can support you with this via our helpline, please give us a call as soon as possible on 0808 800 0303 or email is at [email protected].
Best wishes,
Reah
Thanks Reah
I have already started to make contact with people. i know the feelings will pass but it was good to hear there is a community out there.
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Jackson
I feel and share your pain
I dont know where you are, and how you are now but if there is anything I can do please let me know
Hi, I’ve just picked this up as I seem to have switched off my notifications somehow :-S Thank you so much for the message, I’m still trundling on; I don’t think I’ll ever truly reconcile myself to having Parkinson’s but I seem to be currently at a point where hating it doesn’t dominate my every thought or action. I even opened my curtains for the first time in 3 years a couple of months or so ago.
It sounds like you’ve been having an absolutely rubbish time - having Parkinson’s can feel so utterly bleak and overwhelming and I know from personal experience that it can be really hard to do the things you should be doing, even though they help; and the financial situation is an absolute minefield! Financial security is such a major issue and debt, I suspect, all too common a problem. I am also trying to sort my pension out at the moment (arghhhh). I hope that I’m finally getting somewhere but it has taken forever and I’m still not quite sure where I’m getting :-S.
I upped the exercise because I thought I was supposed to but my renewed passion for riding my bike ( low step through of course so that I can fall off with a little more dignity than when I was trying to navigate a crossbar) has led to raised eyebrows from people who think I should not be riding a bike if I feel I am unable to do my job anymore due to having Parkinson’s :-/ Still, there are fantastic people out there too and the plus side, I have found a group of people of working age in my area who meet up once a month, which has been really positive.
I still struggle with the expectation that everybody with Parkinson’s needs to have a positive outlook as well as a partner and children (for the record, I don’t have any of these things) but if I’m being honest, I’ve always preferred being on my own.
I think it’s really important to be able to say how you feel, even if it isn’t what people want to hear, and so I still reserve the right to say how much I hate this thing but I’m also trying to stop and notice the things that I enjoy; at the moment I’d say that Parkinson’s and I are coexisting in an uneasy truce.
Maybe you could let me know how you get on and If you find any useful approaches in terms of dealing with the money side of things, I’d be interested to hear. Personal experience tells me that there will still be some good times ahead even when it doesn’t feel like it so I think trundling may be the way to go.
Take care.
Jx
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Hi Jackson
thanks for you r e mail, so much of what you have to say chimes with me. Well I have taken your advice and contached the working age grroups in South Manchester and Cheshire and will be attending thse in the next few weeks.
Like you im trying to get my pension, which is proving extrememly difficult just getting the forms filled in, it wont be much but it will comfortably double my income. I get a small amount of benefits but my answer is to use my house as airbnb venue, i have three rooms to rent and in a good month it brings in enough to cover my bills and a small amount of spending money - it means there are people in your house all the time which can be mixed.
whats keeping me sane is my newly aquired dog, Im off to Delamere forest with a friend to give the dog a run while we bike - could end in disaster but counld be good.
I have no idea what the protocols are about this but im happy for you to have my mobile number if that could help.
many thanks