Just sounding off about (daily) life with PD :-S (and Xmas)

Living with Parkinson's Daily life
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It’s been a bad night so I’m just sounding off (again) and I’ve written war and peace (again). It’s Christmas and I really hope people out there with Parkinson’s Disease are coping ok with the festive season, or are even enjoying it :-), so all things considered, this is best ignored, but it’s the only place that I can ‘say’ it :-S…

… I wish more people understood Parkinson’s Disease. To live in a more Parkinson’s friendly society, a more disability aware society and a society that doesn’t discriminate against those who are older and struggling is my somewhat unrealistic new year’s wish. I wish more people understood how difficult life is if you have a long-term, degenerative health condition and from a personal viewpoint, what a grinding, endless drudge living with Parkinson’s can be. If I sleep, I wake up and for 2-3 minutes I can forget that I have Parkinson’s and I am momentarily ok and momentarily happy but then the twitches and the shakes and foot dystonia cut in and there it is, infiltrating every moment and every aspect of my life. Sometimes, I purposefully stay awake all night so that I don’t have to wake up.

I read that I am not alone, that I can live life to the full with Parkinson’s Disease (whatever this means) - - - I really would like somebody to tell me how.

I live on my own. I don’t want pity, this has always been fine for me. I’ve always had a good circle of friends but most of the people in my life don’t understand Parkinson’s. They gave me a lot of time and energy when I was first diagnosed and they can’t keep doing it. They have their own problems and worries to address; the never-ending drudgery of Parkinson’s gets to them too I suppose. Changes are inevitable and I have tried to do everything I’ve been advised to do in order to have the great life that I am told that I can still have. I have contacted all the agencies I am supposed to and I have followed the endless signposts that tend to lead to nowhere, but nothing works like I’m advised that it will.

I can’t do so many things that I used to love doing and I’m losing the friends that I used to do these things with. I have tried to find things to replace them with but I can’t find activities that I can afford and that I enjoy and that I can fit in with. My foot dystonia is appalling at the moment and many people in my life are embarrassed by my increasingly obvious tremor. I have no idea when I have another appointment with a neurologist and while my GP is fine, she knows nothing about PD. I have access to a Parkinson’s specialist nurse who is lovely but she is overworked and has tried all the things she knows to help me to manage the dystonia however nothing has worked so far. I guess I am just stuck with it. On a bad day, I can’t walk unaffected by the dystonia for any distance, I can’t exercise because any exercise sets it off and I can’t drive because of it so I can’t get to many of my local PD group’s activities; and while I like to attend some PD specific activities, I don’t want to have to live whatever vaguely useful and independent time I have left exclusively within a Parkinson’s community. I want to be part of the mainstream community and I want it to understand Parkinson’s in a non-judgemental way. I don’t want to have to have a story of bravery and endless courage in order to be worthwhile. I don’t have children or grandchildren depending on me or lots of people in my life who can contribute money towards research but I would still like to be represented by the NHS and charitable organisations in their information, marketing and publicity campaigns in the hope that society will begin to accept all of us with Parkinson’s - whatever our age, lifestyle and stage of PD.

I can’t do my job anymore. I love my job and I really want to keep doing it but I can’t and I need to find a way forward that means I can still afford to feed myself and live somewhere. I can’t believe how hard this is. I’ve jumped through every hoop that’s been put in front of me (and there have been a lot). I’ve quite forgotten what it feels like to have any dignity - I have answered every ridiculous question that I have been asked and I have become accustomed to having no right to any privacy about my health and yet I’m still struggling to get a solution to my work situation.

I have learnt that if you have Parkinson’s, you shouldn’t mention it very often and if you have to mention it, it should only be mentioned in a positive way; and you definitely should not complain, about anything. I’m still reeling from the letter that my neurologist wrote to occupational health, some parts are not even accurate, but I’ve been advised not to complain about it. In an odd way, it supports me and apparently I have to be grateful for any morsel of support that I can get, however brutally written or inaccurate it is.

In reality, my experience is that unless you can pay for it, there is no real support out there if you have financial, work related or mental health issues as a consequence of having Parkinson’s Disease. And with the government’s renewed mission to spend less on people with long term hea lth conditions and/or disabilities, I can only imagine that things are going to get worse. Of course the policies are worded very positively, for example there is apparently a desire to support people with long-term health conditions to stay in work, but the small print says that the policy is about financial savings and not well-being, I am not hopeful.

I normally get by by ignoring the future and avoiding situations that I can’t cope with and if all else fails, I hit wine and cake; but none of this is going to work at this time of year. I am dreading Xmas day and the festive period and all of the focus on having a great new year. I really would rather just stay in bed and hide from it all but ironically, I will let people down if I do this so I’m practising my false smile and my best ‘I’m OK’ face for all I’m worth. I won’t be alone in the sense that I will be with lots of people, but I will be very, very lonely.

I read that it is possible to live life to the full with Parkinson’s and that nobody has to face Parkinson’s alone and it sounds wonderful, but it isn’t my reality, and I don’t know what I’m doing wrong.

J

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Doh! I need to advise myself to remember never to post anything after a long sleepless night and before medication cuts in. I’m making mental apologies to people in my life who are very, very kind and actual apologies to anybody who read this. Some of its true and some of it is just a bad day.
I need little reminders on my laptop - I need little reminders everywhere but that’s another story.
Jx

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please don’t apologies Jackson, it helped me to read someone saying it as it is ! I just didn’t know how to respond. I’m glad you are feeling better, but it’s tough. I too rather dread the next few days of putting on a face to meet the world. People want to be kind, but generally don’t understand and one can’t go on about it. Beaming good vibes to you!

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Flipping it

I’m sure you are not alone with all those negative feelings after a sleepless night. I counted 11 ‘can’ts’ in your post.

I remember a simple technique from a counsellor I saw at the GP .
I must haVE been off loading a good moan. She helped me get a bit of perspective making me think of at leaST THREE THINGS TO FEEL GOOD ABOUT.

We all know we’ll feel better when we’ve had a sleep. So we can plan something to look forward too when the the sun is out and it feels like a good day.

All the best.

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Hi Jackson

I’m not going to “sympathise” or claim that I have any inkling of what your life on your own with PD is like.

I will just say that I am on my own, have advanced PD. I feel the physical/ neurolical effects every day and night in an increasing way. I feel alone, depressed, hopeless and helpless.

I try not to even mention PD to anyone now - even my daughters - the eldest of whon is very supportive. Talking about any long term health condition just seems to decline into a “pissing contest” . Pointless.

I have made my excuses and withdrawn into solitude for the “festive” period.

I am also pessimistic about our new government and the effects on all of us, especially my daughters and grandaughter.

I don’t look forward to the futre with ANY optimism - particularly wiith regard to the inexorable progress of my PD.

Still it’s all for the best in the best of all possible worlds.

Take care

Allthe best

Cled

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Hi, thank you all for taking the time to reply and for sharing your experiences; this is a totally c**p thing to live with and I guess we all jumble on for as long as we can as best as we can. My thoughts are with all struggling with PD over the Xmas period.
Take care,
Jx

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First of all Merry Christmas everyone.
Jackson, nothing but honesty in what you have said. It takes bravery to say it like it is.

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Hello Jackson, I read your post this morning and I hope sounding off has made you feel a little better. On one level I entirely agree with what you have written I also happen to think much of it could apply to other medical conditions. I was particularly struck by your comment about living life to the full/you’re not alone. For me, and I stress this is only my personal point of view, it has been about changing my mind set accepting my life can’t be the one I saw for myself but by being honest with myself over how things have changed and, importantly, concentrating on what I can do not what I can’t my life still has value and meaning. As for being alone, I think your comments are accurate but I would turn it on it’s head. I am adamant that I will manage my PD my way for as long as I can and to that extent am very clear about what constitutes support. This will undoutedly change over time, it is the nature of the condition but I hope I can still find ways to be positive and consider my life has quality even while accepting this won’t always be easy. At the end of the day I have to believe it otherwise what’s the point. It works for me. An interesting, honest and thought provoking post. I am glad you felt able to post it.

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Morning Jackson hope your well to day
Reading your co meets made me :smiley:

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Hi Jackson

I just want to say thank you, thank you, thank you, for being so truthful about how PD changes you, the difficulties you face, the sheer lack of help available, the hoops you have to jump through just to claim not even enough money to pay the bills and lastly about how many have hardly any knowledge of PD. You said all the things I feel and worry about but have never been able to tell others or even write it down.

Thank you for being the brave one who says it exactly how it is.

Take care
Joy x x

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hii Jackson your comment just says what most of us feel, i must admit tried local Parkinson’s group but it was not for me. Started doing Tai Chi 10 years ago loved it but now finding the moves hard to remember but at our club is David who has PD and he is a lot worse than myself and he keeps going, so thanks to him i keep turning up. later 2020 David is having DB opp i hope he’s ok.
Right look i looked after my mum for 10 years she had Dementia and when i did look after her not many people would accept it (sweep it under the carpet) this is how i feel that at this moment PD is so let’s not be sorry that we have it we need to shout from the roof tops tell the people whats it like, on my GPs web site it said (long term illness) NO PD WAS NOT THERE so i went in to see the manager it seem;s that non of our GPs at the surgery no much about PD. Next time i look at our web site long term illness PD get in touch with Parkinson’s UK
WELL ITS A START hope you feel better keep posting get it off your chest and hopefully you will meet a friend.

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thank you all for your honesty. at night I don’t see the point of battling on, and only my love for my family keeps me going. but, reading what is going to,happen to me I realise that my condition will blight their lives in many ways. I once had sessions with a clinical neurologist bit am scared of asking her for help as she knows nothing about medication . sorry to sound off. the P. nurse suggested mafopar, plus what I have already cobenedoptal. they all seem to contradict each other, and the g.p. isn’t a specialist. apologies again, but a.f. plus two elbow breaks have knocked me a big. here’s to a better 2020!

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the trouble is we all think we can do things as we used to and you can’t i took up Tia Chi and at the time i could follow my tutor but now due to body changing i can only do certain moves at one time if the tutor was away i would take the class.I can’t swim any more, I can’t read a book any more, I can’t sit down and watch TV (only short periods) i can’t turn over in bed, medical books/staff say if you have PD keep moving (you think so ) went to our local MW club danced all night next day i could not move so have found new things to do, have joined 2 web site’s, still do Tia Chi, but doing Chinese brush painting, also got myself a dog so every day go out walking but while out , i take photos with my camera or phone then i put them onto my computer. The morel of this story is forget what you could do but find new things to do. I am lucky that i can still drive but last time I saw my PD nurse it was not my normal one, I told her that i sometimes that I’m tired in the day, (my driving licence was due for renewal) she put on her report that i could not stay awake during the day, this was like a red rag to me as where i live i do need a car, so i rang up and told her that if the document was left as it was i would lose my licence (on day i know it has to go but not yet)so if you are not happy with any report that PD nurse, GP, or top Doctor TELL THEM it’s your life not there’s.

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Hi, thank you all so much for sharing opinions and thoughts and experiences. I personally find that there never seems to be a right time or place or space to really express feelings and fears in relation to Parkinson’s in my ‘real life’ without worrying about the impact this will have on people that I am close to, but I can do that here and knowing how others feel and how other people deal with things really does help. I think it’s something about facing fears in order to manage them - or something like that.
Thank you again and take care.
Jx