Am deeply sorry that this thread has provoked such feelings in you - which are entirely understandable and justified and no doubt if I was the one with PD I would feel myself.
So what is the answer? Lots of well meaning words which don’t make any real difference?. They say it takes a village to raise a child. I would say it takes a community to look after its own who need looking after in whatever way that might be - but we live in a very atomised society and children do not grow up expecting to take their share of responsibility for that kind of thing, so people are expected to get on with it themselves and it is the very lucky few who have neighbours, friends or relatives who help enough. A major change of thinking and attitude is required, so that sufferers do not feel guilty or a burden, and carers do not feel guilty or burned out and relationships are maintained. And/or community living schemes (which do not cost the earth) where PWP and their OH can live amongst others with similar conditions so that each are supported, each have company on tap and resources, activities that no individual private household can provide.
None of us know how we will cope with what life throws at us, or what that might be - though it is easy to imagine being heroic, until it actually happens. And few if any are proud of the negative things they think and feel when under so much pressure - either as sufferer or carer.
warm regards, Pippa
Thank you for your thoughtful and honest reply to my comments. You are absolutely right, the only answer to the situation that people are finding themselves in - both those living with Parkinson’s and any family members who find themselves in a carer’s role - is a more supportive and aware society and I don’t think that is about to happen anytime soon because of the cost implications. The longer-term answer is to find preventative treatments and/or a cure but of course that will take time and money and government commitment to investigate links to environmental factors (which is not going to happen anytime soon either).
I could be wrong but I suspect an even bigger problem is that with no hope of any remission from symptoms or other significant positive outcomes as a result of NHS interventions, those of us living with Parkinson’s Disease are seen as a bad investment all round. Interestingly, the NHS neurological care strategy places one of it’s few, clearly defined priorities in terms of PD on forcing people living with Parkinson’s to consider end of life care as soon as possible. I didn’t think Parkinson’s Disease was a life limiting condition in the true sense of the term and people with Multiple Sclerosis are not to be pushed into this conversation as soon they are diagnosed so this confuses me. Personally, I would have liked there to have been a focus on ensuring that I have an accessible and knowledgeable point of contact for personalised/tailored advice and health treatment in order to ensure that both myself and those who may support me in the future can make the best of life with Parkinson’s, but maybe that’s just me?
There are, of course, constraints on expenditure but there is money to be spent and so the reality seems to be that it is not so much that there is no money to spend on Parkinson’s patients, it is that there is no desire to spend more money on us. The NHS wants results in terms of longer term improvement in health outcomes leading to increasingly less need for expenditure and intervention as the result of any increase in spending; those of us living with degenerative and incurable neurological conditions do not represent good value for money and therefore seem unlikely to ever be a priority.
This, of course, leaves charities focussing a great deal of their efforts and finances on research which in turn will lead to ever increasing pressure on those of us living with Parkinson’s, and those of you living with us, to ‘take control’ and ‘self-manage’ - basically to continue to jumble along as best as we can. Exercise, for example, definitely helps but it’s also useful that it’s free so no wonder it is being recommended as the panacea to all things Parkinson’s. In reality, it’s not that simple. People need their medication and mental health needs to be well managed and some need adequate physical support with care needs in order to access and make the best use of exercise. Without proper medical support and social care systems in place, the constant pressure to exercise just adds another layer of guilt and increased feelings of uselessness to an existence that can feel somewhat futile at the best of times.
All of us enmeshed in the experience of the fallout of Parkinson’s in the here and now need action but I’m not sure that there is going to be any action of note in my lifetime so jumbling through is what is left. I do have to keep reminding myself to live the life I have rather than the one I want and to live in the moment and not the future and I honestly do managed to do this for much of the time. It is the relentlessness and inevitability of Parkinson’s that I find hard and I suppose it is these things that come through strongly in this post. I truly hope you manage to have some good times because I realise that life must be very hard.
I don’t mean to be bleak, it’s just my natural inclination I suspect :-S which is not helped by a global pandemic, the prospect of a long winter with limited social opportunities and a rather wet and dreary day. I need to get off my butt and exercise but an overwhelming sense of apathy has got in first today - I’m off to go and do battle with it
Hello Jackson, tonight I read your post with interest and both saddness, I have always erred on the side of the carers who have been burdened (for want of a better word) with us as I also have Parkinsons. I also think on the side of us with the Parkinsons, as you do, and try to look on the bright side of life. I have been living with my parky for 11 years now and take each day a day at a time, I sometimes sit alone and think of the future, we have a very good relationship my husband and I, but I can’t help wonder when of even if the bubble will burst, and the inevitable will happen. I know at some time or other it will, but until then I don’t want it to effect how I feel at this moment in time. I feel that I want to have the fight to live my life to the full, It helps to have a very good local support group in the area where we live, of which I have become a member of the committee, I find it keeps me from getting in the doldrums but most importantly keeping my mind busy and active. We have an exercise group, a choir, arrange outings, have quizzes and games, these activities include both partners and PWP,s, this has been my lifeline and I can say I enjoy being with others who are on the same level as myself, we help each other as much as we can within our capabilities
Best wishes for the future whatever it brings - sheffy (a fellow parky)
Hi Alison and other carers out there,
It’s been a long time since I posted, But this last week has been such a change in how my husband is that I am shaken up. He stopped taking Amantadine a week ago and his mental health has deteriorated massively. I had looked up stopping it quickly for a PWP and the consulutant said he’d not had any issues with patients, as did the nurse. In a week my husbands paranoia, hallucinations have increased he has not recognised me at times and today not our daughter. It was very upsetting for her. I had mentioned to the consultant my reservations about stopping amantadine but felt that my concerns were not taken seriously. It was being stopped as he was having increased hallucinations, so the idea is to reduce them. I’ve been told it takes 2 weeks to get out of the system. But feel as if I wasn’t listened and not offered any advice. Am hoping he will return to some sort of normality as after this one week my life has been turned upside down. Feeling pretty desperate.
We’re so sorry to hear about your husband’s recent changes due to stopping his medication. We would encourage you to speak to your GP about your consultant’s response. It is important that you feel you can rely on your support network, and sometimes it takes some time to get the perfect team around you. You can also find some information regarding Amantadine here: https://www.parkinsons.org.uk/information-and-support/amantadine that may help. As always feel free to contact us directly at our free confidential helpline at 0808 800 0303 or at [email protected].
We wish you the absolute best, and we will continue to fight this condition in every way possible until there is a cure.
I’ve just joined this group and this is the first post I’ve read-I could have written it! Thankyou for letting me see ‘its not just me’
A warm welcome to the forum, it is lovely to have you here.
It’s great that you’ve already found comfort in knowing that you share similar experiences with other members on the forum - this is quite literally why we have this community so people affected by Parkinson’s don’t feel alone. If you’d like to speak someone about your current situation, you can always give our confidential helpline a call for more support on 0808 800 0303.
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Good morning, I haven’t been here for some time but just felt I really need to reach out a bit more to those who understand the struggles when being a carer of a loved one with PD. My husband was only diagnosed about 4 years ago but as many others he had symptoms for quiet a while before the diagnoses was made. He became incontinent and has had a catheter permanently now for over a year, he also suffers with COPD. Over the last month he has been having more hallucinations, mostly seeing family members but also small creatures run by. At the moment he accepts that these are not real. His short term memory seems to be affected and I do have to make sure he takes his medication. I have now got 5 alarms set on both our mobiles to remind us both. He has for a long time been very noisy during sleep but is now making sounds all day. I am feeling tired and feel I could scream, especially during the night. I do sleep in my own room but it’s so loud, like last night I just couldn’t sleep much. Due to this Covid 19 we are also shielding which i think is having a bad affect on us both.I know that there are so many who are probably in a lot more difficult situations, we are thankful to have a loving family who shop etc for us. Life just seems so lonely at times. I’ve had my rant and shared how I am or not coping at times so guess I had better stop.
Morning I can understand your feelings. My husband has had hallucinations for a long time but they became increasingly more disturbing, so he has had some medications taken out. Like you the Covid has had a massive impact on his mental health and social structures that gave dimension to a week are gone as well as some independence. We are lucky in that we have continued to see our family after we considered risk and value to visits, especially on both of our mental health. My husband seems to have lost any ability to do anything constructive or creative. He can’t use the computer, play guitar, read a book anymore, and unable to learn anything new to help with filling up the day. I am able to go out independently or meet a friend for a walk so try and get some break during the day. Like you, make sure he takes his meds on time even that fails at times, as he says he has taken it when he hasn’t!! I find the lack of emotional ‘expression the hardest, the insularness and not really aware of any difficulty I might have and be able to respond to it. I feel desperately lonely at times angry and want to scream too!!! I feel trapped in a relatiionship that I have no choice in and not sure that ‘love’ is enough to keep me sane. As our lives are decimated by the impact of this horrendous disease, with no hope or alternatives for the future, a support system that is unable to offer anything more than drugs and little understanding/care for what is really going on. As I say to people ‘’ say anything that one does as a human being and PD affects it’. So life shrinks and the tunnel gets narrower and PWP and carer are entwined in something that is impossible to get out of. Basically it’s shit and we just have to find small things to brighten up the day, appreciate a dew drop on a leaf or petal, beautiful colours in the sky, a bird pecking. Little things to give a bit of positivity to an otherwise tedious life.
Hi Megzee, thank you for your reply, it is a help to read your comments. I will be contacting his PD nurse to see if he needs some changes to his medication. My hubby attempted to do model truck building to keep occupied but struggled to understand the instructions and with the small parts, in the end he has asked his brother to finish it. He is now having a go at a jigsaw puzzle. I feel so frustrated for him because he was a active man with a very creative mind, he was always on the go.
I am also making enquiries about a respite break, he doesn’t seem very happy when I mention it but it’s needed for both of us. Have you been able to have time away?