Hello it’s taken me almost 18 months to register myself. I was diagnosed in July 2017 with young onset PD since then I really tried to cope and play my symptoms down I’ve only told a few of my family and not discussed it with my children. Recently I am finding it harder to cope both mentally and physically. The use of my right side is deteriorating and I’m finding it harder to cope at work I feeling very lonely & isolatied my partner will not discuss my fears or our future. Any advice would be welcoming
First of all, you have reached out to the forum and so you are most definitely not on your own. We may not physically be with you and don’t have all the answers but you will find folk can and do respond and I hope you feel you have support here.
Second if I might offer a view, but you seem to be at a bit of a crossroads. There is no right or wrong way to deal with any of this you only have to find what’s right for you and the family and I think perhaps you need some good information and guidance. If you look on the main Parkinson’s Uk site you will find loads of info incl one about your rights at work. You could also try the Helpdesk 08088000303 for some neutral but informed discussion about your personal circumstances.
For what it’s worth I decided to tell people very soon after my diagnosis, saves all the wondering and second guessing and by the time it was more obvious it was old news. For me personally, I found it easier when people knew. It may not be for you and that’s fine but as you are beginning to feel things are changing it is perhaps time to consider your next step. Making a conscious decision gives you control and that in itself can help - PD will do what it will and can feel like it’s taken you over. It hasn’t, you live with it, you have it it doesn’t have you.
Finally re your partner PD is life changing for everyone for different reasons, she has to find her way same as you. I wouldn’t be surprised if some of her feelings are the same as yours. What I do know is you can’t rush these things and everyone can only go at their own pace so hang on in there.
Don’t know how much use this is to you but I hope at least you feel not so alone
Dreams1
Tot IMO has given really great insights and advise.
I am American. But I hope it is alright if I add. The future with those of us with PD depends allot on whats inside of us. I choose to let my family and friends know I had the disease. What surprised me the most was the fact once I excepted the consequences of daily life with parkies. No one made a big deal in my family and friends about the symptoms I had. Carry on with life. It is not the end of life just because you have PD.
Couldn’t agree more, positive attitude really does go a long way, not always easy and not without the odd ‘duvet day’ like response but definitely worth the effort and as you say I accept what you call consequences (and I tend to think of as challenges for me to find a way to minimise the impact) and get on with living, It works for me anyway.
Thankyou for your advice I tried to cope with this alone but maybe it’s time to talk my sons are my main concern I don’t want them to worry my youngest is only 14. At least I’ve joined the forum which should hopefully help.
With respect whilst I do understand why you are trying to cope incl the need to get used to it yourself and the need to protect your family, Parkinson’s is not something people won’t notice, and how would the. people you care about feel if you shut them out nor is it something you can manage on your own, manage it on your terms, yes - alone no, nor should you have to. I am not suggesting for one minute it is easy, it’s not but it’s clearly tearing you apart and you are clearly thinking you can’t go on as you are or you would not have contacted the forum. You have taken the first step - I don’t underestimate what that cost you, point is you did it. Maybe this will help with the next step
https://www.parkinsons.org.uk/information-and-support/talking-children-and-teenagers
and I urge you to speak to the Helpline, they will listen and I really do think you need to talk to someone - be brave and pick up the phone you have nothing to lose and everything to gain.
I hope I haven’t overstepped the mark here, I would not normally tell anyone what to do and you can tell me to mind my own if you wish, but now and again I think it is worth being a bit blunt. I don’t say these things to make things harder but if you go on as you are something will give at some point. It is not easy but you may be surprised by how people react, incl your children besides if you have carried this load all this time, you have definitely got the strength to. share it. I know this won’t have been an. easy read and it was written with no wish to do other than hopefully give you something that helps. I hope it does that and if I have misjudged that I can only apologise.
Thankyou once again for taking the time to reply I appreciate your advice and it’s given an opportunity to rethink .
Do please let me know how you are getting on. I wish you well, whatever you decide to do.
A lot of good advice has been given, but the one thing I would add regarding work join a union if you haven’t already because you can get proper legal advice at the drop of a hat.
Good luck and tell your family.
Hi Dreams1,
I’ve just read your post, I was diagnosed in June 2017 and have a 14 year old as well. I told my lad as soon as I got diagnosed as I was struggling with my right side so he could see something wasn’t right it took a lot of pressure off me telling him and he is old enough to understand it’s life changing but not the end of my life. Work wise I have been retired due to ill health so that’s one less worry as no way could I cope with my role anymore. I guess I’ve been unlucky as I got diagnosed with cancer 3 months after the Parkinson’s diagnosis so that treatment took priority and has messed up my Parkinson’s treatment quite a lot but things are settling now and I do think the meds I’m on are making a huge difference and I’m starting to accept my life is a little different now. I also understand the loneliness feelings, I feel like no one else around me can understand what it’s like to have such a life changing thing happen even though I know I have family and friends who love me and want to help it feels like I need to put on a brave face if you know what I mean so I end up isolating myself which I know I have to stop doing.
Anyway I shall stop rambling just wanted to say you aren’t alone in this xx
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Hi @Eccles,
It’s great to see you offering some moral support on this thread and thanks for being so honest about your own experience, I’m sure you’re helping many of our members. You might be interested to know that we have around 365 local groups across the UK, where you have the opportunity to meet other people affected by Parkinson’s, face to face so you can talk and discuss your worries.
You can find out more information on our website here - https://www.parkinsons.org.uk/information-and-support/local-groups. Additionally, if you ever need to speak to someone about how you’re feeling, you can always give our helpline a call on 0808 800 0303 or email us at [email protected].
I hope you find this information helpful.
Best wishes,
Reah
Hi Reah, I have been in touch with the local advisor and she has been very helpful but I’ve not really looked at local support groups which I shall do.
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Hi @Eccles,
Glad to hear that you got in touch with one of our advisers and yes, do check out our local support groups.
Best wishes,
Reah