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.