Living a lie

Hi

I’m new to this site, my husband was diagnosed early 2018 he has chose to not share his news which I respect, he is not currently seeking any treatment, support or help. He never talks about how he feels and from the day of this dreadful news I lost the man I know and love. I feel helpless, angry and at a loss of what to do. Any advice please?

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Hello wood84 ime sorry to hear of your husband troubles it must be hard for him is he old school, may be he finds talking about his pd embarrassing he probably thinking y it happened to him talking helps the disease cannot be cured as of yet he will know when he needs meds then may be he may accept this part of his life it does take time to sink in i know i haven’t excepted my pd really but i try to forget but you can’t i work, drive , and stick 2 fingers up to it i may have pd but parkinsons doesn’t have me

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Hi and welcome to forum @Wood84, We’re sorry to hear about your husband’s reaction to his diagnosis. While it’s a difficult one to hear, there are many ways to treat Parkinson’s and gather a good support network. This must be very hard for you. We hope this can change in the future.

We see that @calv1960 has already answered you and we know that more of our friendly members will be along to add their own thoughts.

It’s very important to take care of your own needs and you may benefit from reading about supporting someone with Parkinson’s here. We’re here for both of you. Our helpline and local advisers can support you if you call them on 0808 800 0303.

Wishing you the very best,
Janice
Forum Moderation Team

Hello Wood84
I was very saddened to read your post. At a time when you probably need each other more than ever, it must be heartbreaking that your husband has effectively shut you out.
Equally the raw mix of emotion you are experiencing must make things even harder changing as I suspect they do, often more than once per day.
A few things come to mind, observations really rather than anything practical but which may perhaps help you make some sense of the situation and hopefully help you cope a bit better.

First, he may not be deliberately avoiding talking about his Parkinson’s. As he is not currently receiving any treatment, support or seeking help, it may be easy for him to
pretend, maybe deny, it is happening therefore 'what’s to talk about
This is probably going to sound ridiculous but there may be something in that three years on from diagnosis he is managing without treatment or support; he might think it would be tempting fate if he started to talk about it. Not as far fetched as it might appear - a friend of mine won’t watch live England matches because on too many occasions when he has they have lost and when he doesn’t they win!
If your husband is not naturally a talker when it comes to emotions, this would be unlikely to be different because it’s Parkinson’s.
I’m guessing here of course but hopefully therr is something in there that resonates with you.

As for what you can do, I see you have already some replies which I hope helped. I have been trying to think what I might do in your shoes and my blue sky thinking resulted in this:
It’s important that you look after yourself. Whatever the eventual outcome it will mean little if your health breaks.
Play the long game smartly. By that I mean don’t make a big deal out of his lack of communication. Keep it low key and drip feed when the opportunity arises - perhaps he mentioned a small thing in passing, maybe you have read something, maybe make a comment which requires him to say more than yes or no but is positive - perhaps an opening gambit could be along the lines of "do you realise it’s been 3 years since your diagnosis and I don’t know what I thought was going to happen but it certainly wasn’t that you’re still holding your own without any treatment or support
Just because your husband is 'going it alone doesn’t mean you have to. You can of course use the forum as you have done today and the helpdesk but, with the lockdown hopefully coming to an end you may wish to consider joining a local support group and meet people living with Parkinson’s and their carers. What you choose to tell your husband is up to you but his Parkinson’s does affect you too and he needs to understand that if he won’t discuss it, you need some support from somewhere.
Following on from this last point it may perhaps be worth considering writing him a letter setting out what you think and how you are feeling. You will have given him a way in without what he may see as a threatening conversation, and he can choose how to respond. It will need to be carefully written but could perhaps give you a way forward.
I don’t know if any of this will be feasible or possible as obviously I don’t know either of you nor anything of your relationship, but hopefully there is something in there somewhere that helps.
Take care and wishing you well.
Tot

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Hi Wood84
As your husband is not seeking help or support in any shape or form he obviously wants to go on as before. In what way has he changed? I know that the news that he had Parkinsons was not what you were hoping for but he was still the same person. He did not suddenly change overnight - or did he? Is that why you say you lost him overnight? If you have noticed specific changes then ask him about them - why has he changed, what has made the difference? Changes due to Parkinsons usually happen gradually, giving time to adjust, He will not have changed overnight .Address the situation again and try to imagine what he really feels …

Hello Wood84 or as we say here in Derbyshire ay up mi duk
I’m sorry to hear struggle and the obvious struggle your husband is having within himself, I’m now going to sound extremely pompous but I shout from the roof top all my family and friends know of my condition
and make allowances for it. We all deal with problems differently, my way is to meet whatever life throws at me head on and I firmly believe that we should all shout out about PD and let the world know what horrible disease it is, possible that the more we push PD the more people understand the more donations = more research. keep smiling and stick your chin out and let life have another wack at it do keep coming on here, we all know from experience what your going through.My personal experience is I am 82 I was diagnosed 12 years ago, and have taken to having tumble, as you do, last may I fell down stairs had a bleed on my brain and apparently much to my wife’s I chagrin in my fuddled state
I was threatening to smack the young lady paramedics bottom, as she leaned over treating me my latest event was only this afternoon I tripped going out of the back door hit a concrete line post badly grazing my arm keep smiling. chin up George

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