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Relationship with someone who has Parkinson's Disease

(11 Posts)
MoonStone93 Wed 27-Jan-21 10:48:51

I met the love of my life at age 13. We meandered in and out of each others lives until I moved 300 miles away to work. That was almost 40 years ago.
About 3 years ago I received an email from him and we communicated, initially very cautiously, but it progressed and we finally met up about a year ago.
He is divorced with 3 adult children and I have been alone forever. Sadly, he has Parkinson's Disease which was diagnosed 8 years ago.
I was so scared. I had never known anyone with PD. It was heartbreaking to see what it had done to this 6ft 2in, athletic, gorgeous man. I walked on eggshells trying to understand his condition. But, honestly, at age 67 and 69 we fell hopelessly head over heels. Despite his condition we were like teenagers, it felt like we had come home and I couldn't believe how happy and lucky I was.
We live 70 miles from each other and, upon reflection, I think he hid a lot of his PD issues from me. What an evil disease it is. Over time I discovered and learned a lot about PD and eventually I became very aware of his serious tiredness, his irritability, his obsessive and sometimes inappropriate behaviour, and lots more, but I tried to ride these mini storms, when normally I wouldn't have done, because I knew he had no control over a lot of what was happening. Despite all of that we were so, so happy.
It is really difficult, if not impossible, to see and hear things being said and done and not be able to work out how much of it is attributable to PD. Eventually, that moment arrived when he did something that I had to challenge, the effect on him was huge.
He managed to communicate how stressed and unwell it had made him and also that he was sorry for upsetting me but, also, that he felt his condition made it impossible to have a relationship with anyone because he can be so grizzly, irritable, aggressive, apathetic etc.
I responded to him and, I guess, as is my wont, let him have my very honest view. He now won't reply to texts, emails, letters or phone calls.
I am bereft because it all feels unfinished and so sad that, having found each other after all the years, I will never see or speak with him again.
Is there anyone out there that has had a similar experience? Does PD make it impossible for him to communicate? I know he will be lying low because he knows he can't function as normal and in the very early days he said to me that PD made him unpredictable and "if I ever treat you badly tell me to "go away" because it will kill me if I treat you wrongly".
There's a part of me that says he's trying to protect both of us but, as I now realise, that we could never have a "normal" relationship and that I really would be happy to have whatever PD allows us to have so that we can still enjoy each others company and support each other whenever that is needed.
I have explained all of this to him but nothing, no reply or acknowledgement whatsoever.
Is PD this evil? Has anyone got any insight into such behaviour and how to encourage him to communicate or should I be trying very hard to forget him.
I am so confused......

MoonStone93 Wed 27-Jan-21 10:50:22

Advice please!!

FannyCornforth Wed 27-Jan-21 11:02:25

Oh my goodness, what an incredibly sad situation. My heart really goes out to you. I'm sorry, I don't have any advice at present, but I'm sure that someone far wiser than I am will be along soon. I really hope that he gets in touch with you and that you have a happier resolution Moonstone thanks

Daisymae Wed 27-Jan-21 11:11:16

This is so difficult. I do think that a serious neurological condition can affect personality. One issue for you is that basically you have experienced the excitement of a new relationship twice with the same person. You haven't had the quiet, stable or even challenging years in between. It does seem though that how things move on from here has been taken out of your hands. It is possible that your reaction to what had happened has convinced your partner that it would be difficult for you to deal with all that is to come. Age, increasing disability etc. I do understand that things feel unfinished, but as he refuses to contact you maybe the best option is to be grateful for the good times you had together and move on.

crazyH Wed 27-Jan-21 11:19:39

He probably is afraid for you - as far as I know, PD is a progressive disease and he doesn’t want to inflict his bleak future on you. I do feel for you both. You must give him some time to think things over and decide. Wish you both a great future together or deserve it flowers

Oopsadaisy1 Wed 27-Jan-21 11:39:55

Does he have anyone who can read your letters, emails , texts to him? Maybe he is unable to reply?

My neighbour had this, it was controlled really well with drugs, no tremors unless he got really tired, but the number of times he would go around the village looking for his wife! He was unable to show any emotion, but would break down in tears, he could hardly walk and yet managed to climb over the fence because he thought his wife was in our house.( she died some years before) maybe your friend is aware of what is happening to him and doesn’t want you to see him like it?
Of course at other times our neighbour was the same charming man that he always was, but obviously very unwell.
I know of 3 people in our Village who all had Parkinson’s ( which seems odd in such a small village) and they all had very different symptoms.
TBH the only way to find out is to go and see him and talk to him, are you willing to look after him? Can you cope with him as he is and as he will, inevitably, get much much worse.

Luckygirl Wed 27-Jan-21 12:51:28

I will send you a private message MoonStone93

Sparklefizz Wed 27-Jan-21 12:56:36

MoonStone What a horrible situation you find yourself in after falling in love and having all the hopes and dreams that go along with that.

However ..... it is very different if a partner becomes ill with PD (or indeed any serious illness) after a long relationship of many years, but in your situation you will, right from the start, be taking on the role of his carer which is only going to get worse. You will need to think very carefully about this and it seems to me (easy for a stranger, I know) that he is giving you the chance to do this.

I wish you all the very best for the future. Luckygirl can give you the best advice from her own experience. flowers

Septimia Wed 27-Jan-21 12:58:38

Perhaps it would be worthwhile talking to him - if you can get him to do so. You could agree to plan for the future, enjoying the time that you can and having in place arrangements for when his health deteriorates too much for you to cope.

MadFerretLady Sat 13-Feb-21 15:57:24

My mother, grandmother, and great aunt all had PD. My good friend’s husband also had it. I think the issue is t that the PD. makes it difficult relationship wise... but that having a chronic progressive illness does. PD itself is horrible, but Mum was mum, irrespective... her personality didn’t change but she was challenging to care for... as anyone with a chronic condition is. Tbh I think you need to consider whether you can cope with such a relationship... it cannot be easy, for either of you. 🌹

granny'sbuttons Sat 13-Feb-21 20:54:01

There is a huge amount of useful information on the Parkinson’s UK website that you might find helpful. It is a horrid disease that affects people in different ways. I hope you can find a way through your difficult and sad situation.