This is fairly negative so it may be best left unread but it's how I feel; nobody, however, wants to hear it and this is the only place I can think of to say it so I'll just apologise in advance.
I hate having Parkinson’s. I resent it, I am fearful of it and I can find no degree of real acceptance whatsoever. I hate the impact it is having on my friendships, my job, my choices my present and my future. I deeply resent being advised to think positively as though it is a switch that can just be flicked on that will make everything better.
I put my best game face on and go through the motions to make other people happy but in reality, I do mind that I'm no longer able to do things such as going on walking or cycling holidays with friends. And I do mind when people walk on without me and arrange to meet me later because I’m slow. I want them to slow down and wait.
I hate other people’s reactions to this condition. When I'm out, I see others avoiding PWP and I hear the comments that they make and I realise how very, very far away from understanding, awareness and public acceptance of this condition we are.
I can’t contemplate the future and I find nothing much to celebrate in the present.
Nobody wants to hear this. Friends read PUK's website and tell me that I just need to eat better or do a bit of Tai Chi and socialise with others ‘like me’ (then nobody will have to wait for me or be embarrassed by my shaking) oh, and if I could also just think positively, it'll all be fine. My life with PD is only challenging, apparently, because I'm not doing the right things and I don't have the right mind-set.
I know that nobody can sort this out for me, but right now it doesn't feel fine and I want to be allowed to say so without being judged or excluded because I have the wrong attitude and I might infect others with my negativity.
I know that I'll regret posting this in the daylight, but it's stupid o' clock right now and I seem to have less resolve in the early hours so I'll just apologise again in advance. :-S
My Husband is the one with PD, diagnoised 1 year ago today...
He shakes very badly and his mouth has started to droop to one side.. People stare but dont actually say anything. Hes a lot slower and gets tired a lot more. He actually told his work colleagues the other day as the company are talking about changes they want to implement,which my Husband will not be able to work with. His HR already know as do DVLA that he has PD but HR have never mentioned anything to him in the year since he told them,not asked how he is and does he need any changes made etc.....we saw his PD nurse last November and have not seen or heard from her since despite leaving messages on her phone....total fail we feel...
The future worries me to death, I personally hate this PD and how its affecting both of us and our Familes....
PD is always "the elephant in the room" and the ones that do mention it always know someone who has suffered dreadfully but are happy to let us know the gory details! Like we haven't already searched the internet for everything about PD.....
I hate everything about PD with a vengance....people tell my husband that medication is fantastic these days? Hes on the "gold star" Sinemet but when I researched there has been no new drugs for 50 years.....just keep adding more drugs together so you end up taking loads a day...what a life to look forward to? People have no idea what PD is really like unless they suffer themselves...
I wonder where we will be in 5 years time. Wheres all this help,wheres the new drugs,where does all the money go which people donate? At this moment in time we both feel totally p****d off with everything...
Jackson we all feel negative at times we are only human...so I am sending you a virtual hug....xxx
I loved your posts as it needs to be said its a horrible illness, the main issue for me is there is no empathy out there! I have had people tell me my tremor is psychological and that I can stop it (psysiotherapist) would you believe.
Hells bells someone else asked me why I was able to stay in my house when I didnt work anymore? Cos I paid the mortgage off by hard graft working long hours etc etc but now I am a leech on society?.. rant rant.
Why dont we see people in advanced stages on tv the cancer ads for funds tell it how it is. why dont we ? no wonder we dont get much cash .?.
That said my friends trying to be as healthy as you can is only going to help, being positive is hard but this can help too. But of course we are all human and that means we have our downs and wonder if its worth getting out of bed in the morning that is fine and if you didnt scream out now and again you would be a cold hard android rather than a warm human being...
I know who I want to spend time with and it aint made of metal, so shout rant cry and have a duvet day.
Hi, thank you both so much for your replies, you make sense and your replies help. Sounds like you're in a rotten position regarding medical backup Babesbrown, I have to say I see a wonderful PD nurse and dread losing her support so I really feel for you not being able to access good medical advice. And then there's work :-S. I'm off today so have decided cake is the answer - it's working as immediate gratification - I don't have much hope for its long term prospects but I'm working on living in the moment so :-) Thank you again both. Take care. J x
Hi Jackson, I'm one of those ones who bleats on about positivity. It works a large % of the time. But I agree100% with your post and I understand you when in the middle of the night when you feel most lonely. We are alone in this fight and if you can't rant on here where can you?
You'll get back up and when you do you'll be stronger. Take care.
I have always had a positive outlook on life but recently this has changed completely and I now feel incredibly negative.
I can't bear the way this disease affects me and everybody around me. I'm falling over every few days and my partner is becoming increasingly stressed, wondering when I'll next crash to the ground. This always happens at home because I don't go anywhere else unless I'm in my wheelchair as I freeze constantly. Two weeks ago when I fell I fractured my wrist, now have plaster cast on it for four more weeks. This affects my balance so my walking is even worse.
Sorry about this. Don't know if it helps to unload or not. I shall stop now. The future looks so black.
I'm really sorry to read that you have been falling more frequently lately and this is affecting your outlook on life and the future. Have you considered talking to your specialist or Parkinson's nurse about your medication in case it can be tweaked to tackle this increase in the frequency of your falls? Please have a look at the suggestions on the section on our website dedicated to falls, just in case you find something that might help: https://www.parkinsons.org.uk/information-and-support/falls-and-dizziness
Oh dear, i have either posted a ridiculously long reply twice or deleted it all (twice) so i will stop at saying that your post illustrates what a totally sh#tty condition / illness this is and i can see that a plaster cast on top could feel like a challenge too far. I truly hope some brighter days are round the corner but i also think that bottling up all our fears and negative feelings causes real harm. What we do with them once we have expressed them, of course, i am unsure :-( I'm giving counselling a go - I'm self funding so i can only do it while I'm in work but maybe it'll help.
Hi Jackson, yes, we all try to be so positive when really we want to shout and swear at having this crap disease. No-one understands what it's like and it's difficult to explain to other 'fit' people. But there are so many folk suffering and battling with much worse, or life threatening conditions, than ours. I have found that having friends with PD helps. Before I moved house, I had 2 such friends and we'd go out for lunch or afternoon tea, or walks (slowly!), or just go to one another's house for a chat and compare notes and have a laugh. Since I've moved, I've made friends with a few people on here and we met up a while ago, in Hexham and had a lot of fun. TeeHee, (on this forum), lives quite close to me and we plan to go shopping, when she's dyed her hair back to blonde, started her diet and gets her walking sorted!! (She won't mind me writing that, as she has a GSH)! The thing to try and do, is to not let it control your life.....you have to be determined that YOU will control IT. Shout, scream, swear, rant, rave and bully it into the background.
I am almost back in action trouble with me is I sometimes tell porky pies, fact is have started to get quite severe sharp pains like an electric shock, got prescribed gabapentin as naproxin not helping. Struggling to walk to far and well, trying to be positive and laugh it off. I have fallen upstairs twice now and wonder why I dont fall down ?
Anyway I have not forgotton my new friend and once got pain undercontrol will be back in action.
Thats me being human, not making a joke of it and having a good bleat, yep feel better already.
Love to you all, rant and rave its good now and again.
A bit less negative, and feeling.a bit less alone, thanks to all your responses. When.i read something like your last post I wonder what I am complaining about. We all have our problems, If only I had a magic wand. . . .
So pleased you are on the UP, great to hear. I think its great to make a joke, laugh at life be positive but it can be isolating as it can make you feel like you are the only one struggling.
I was so pleased to read a few posts, of people being honest having a bleat, then we know we all have our fears, struggles in various degrees and no longer feel as alone. It helped me, so thank you.
Here's to a new day, lets make the most of it, love to all. xx
Hi Babesbrown,
Your husband's situation at work sounds as though it has some similarities to my own and so I've been wondering (werriting :-S) about a few things. I suspect you know all of this and I am therefore about to embarrass myself (again!) but if I don't write it, I'll have an early hours crisis of conscience. Hmmmmm, it seems that my unsolicited ramblings are not totally altruistic and may, therefore, be best ignored (I am soooo wise when I give advice but can't manage the chaos in my own life!)
Anyway.....
Employers have a duty to make reasonable adjustments in certain situations such as disability and it's likely that employees with PD would be classed as having a disability (as was my experience).
Against my instinctive reaction (I really didn't want to draw attention to myself) I was strongly advised via this forum and an employee advice line to force the issue and get an OH Referral. This has turned out to the best action I could have taken. The OH nurse immediately suggested that I was likely to be considered as having a disability under the DDA, suggested some adjustments, pointed me towards counselling (though it took me a while to accept that this might help) and advised self referring to Access to Work.
ACAS is (are?) a really good source of information (8 a.m. was the best time to call).
I was advised that in my position, getting the OH report, the classification under the DDA and any other relevant reports would put me in a stronger position, bearing in mind the never ending restructures and staffing cuts, than if I sat back quietly because the reality is that my employer sees me as a source of future expense and inconvenience and would be happy enough if I happened to fall out of a job before I get too expensive - this is a little harder to achieve with the relevant paperwork in place
It's a hard decision because you sometimes have to force the issue and it feels like you're giving management the information they need to 'lose' you, but in my case it helped - though this may not be everybody's experience.
Anyway, I hope you get some qualified support rather than the musings of a hormonal woman with Parkinson's :-). :-0 - as you imply- navigating through this without some knowledgeable input is like wading through mud in the fog.
My husband has now told everyone he has PD...so its out! A year ago he was diagnoised so decided it was time his work colleagues knew. HR have known since the beginning as he had his license changed to 3 year one..as part of his job involves driving HR had to be told....
We went to see our GP the other day and he basically said he didn't know enough to advise and to contact the PD nurse...fat chance of that as my husband has not seen or heard from her since last November..despite leaving messages asking her to contact us.
I think my husband now feels that because hes put "it" out HR may contact him or his actual manager may speak to him about work etc.....so watch this space haha...
Thanks for your advice we do appreciate it and its helpful to know its worked for you...a route we may have to follow if things don't change..
I am also struggling to accept pd. it is eight years and I find it hard to accept that I will never get better indeed the symptoms are getting worse. Going out is hard when dyskenisa starts I am embarrassed and can't sit still. It spoils visits to the hairdressers and going out dinner. I feel abandoned by the pd nurse who is part time and takes weeks to reply to an email . My consultant has just change my annual appointment to Dec what use is an annual appointment? I feel there is no help as I try to self medicate with sinemet, selegline, Kalms etc. I do not know if you can overdose on these drugs and I do not know if I am making my dyskensia worse. My sister in law who is a nurse said eventually I will become a recluse ah well at 64 I suppose I have had my day in the sun! I too apologise for self pity in advance it's a bad day as I have a cold just to add to my woes.
We're really sorry to hear that you've been struggling to get the support you need. It may be worthwhile talking to someone from our free Helpline on 0808 800 0303. They'll be happy to offer advice and they're open from Monday-Friday: 9am-7pm and Saturday: 10am-2pm.
Lots of us on this forum are routing for you. It's tough sometimes when you want to do all the things ,you've always done in the same way, as you used to. You can do all those things BUT in a different way just like driving your car, you used to have a manual gearbox ,now you need an automatic but you are still driving .
Hairdressers know what you mean its a problem that needs a solution just like driving. I changed my hairdresser found one located on ground level and one that did not keep asking me when I was going on holiday. Most important patient ,willing to stop cutting or blow drying my hair when I want to shift position as stiffening up. Willing to show me how to style my own hair and keep to easy care styles so I don't look like the wild woman of Borneo. etc.
Out for dinner I still go out but wear dark tops or colours to match the food I will be eating. This is no joke . I choose dimly lit cosy places so I don't think everyone is looking at me.. My friends usually laugh about it 'are you eating it or wearing it'
We have all been there we hit a low point, hide away but life is just different not over. Your husband you say he is supportive that's because he loves you and I am guessing he knows if the boot was on the other foot you would have supported him.
Adapt to live now and then if needed make some more adaptions to carry on living your life. I hope you are finding the support you deserve.
