I am very sorry that things turned out so sad for you and your children, I had a sad childhood and it never, never , never goes away. I hope that you will be safe and happy in your new home. Take care of yourself
Hi Surrey Dreamer,
I am very sorry that things turned out so sad for you and your children, I had a sad childhood and it never, never , never goes away. I hope that you will be safe and happy in your new home. Take care of yourself
I am very sorry that things turned out so sad for you and your children, I had a sad childhood and it never, never , never goes away. I hope that you will be safe and happy in your new home. Take care of yourself
I'd phone Jeremy Kyle.
If you were there what would he say?
Nobody knows what pwp and there carers go through. Even within this forum PD is different for everyone. All our prescriptions, our relationships, our personalities, our coping methods, etc are all different.
(I read a book by a top psychiatrist looking for the secret to coping. 400 pages of waffle later it boiled down to this; think of everything that could go wrong and make a plan. So when the proverbial hits the fan, you'll know what to do. - That cost me £12.99 and 8 hours i'll never see again)
Do your best by you and yours for the right reasons and nobody can hold judgement over you. No matter what they say, you dont have to justify yourself to anyone. Be at peace with yourself, be content, laugh at the idiots who think they know better then go back to the start of this paragraph and start again.
Thats what I do and life is the same as everyone elses - same poo different day.
I know its not funny, but i lsughed when I read the letter Surrey Dreamer received from someone who googled parkinson's and diagnosed he was over medicated was a hoot.
You can see her desprately trying to be hurtful, I hope she failled. Her letter just oozes ignorance.
I'd pen my reply now and post it with a copy of her original when you learn he's been booted back home and she is a few thousand $'s worse off.
Go about your business safe in the knowledge that should you ever breakdown completely, if it ever gets that bad, or you just want your fizzog on t.v., there is always Jeremy and his team of experts there to extract you from the mire.
If you were there what would he say?
Nobody knows what pwp and there carers go through. Even within this forum PD is different for everyone. All our prescriptions, our relationships, our personalities, our coping methods, etc are all different.
(I read a book by a top psychiatrist looking for the secret to coping. 400 pages of waffle later it boiled down to this; think of everything that could go wrong and make a plan. So when the proverbial hits the fan, you'll know what to do. - That cost me £12.99 and 8 hours i'll never see again)
Do your best by you and yours for the right reasons and nobody can hold judgement over you. No matter what they say, you dont have to justify yourself to anyone. Be at peace with yourself, be content, laugh at the idiots who think they know better then go back to the start of this paragraph and start again.
Thats what I do and life is the same as everyone elses - same poo different day.
I know its not funny, but i lsughed when I read the letter Surrey Dreamer received from someone who googled parkinson's and diagnosed he was over medicated was a hoot.
You can see her desprately trying to be hurtful, I hope she failled. Her letter just oozes ignorance.
I'd pen my reply now and post it with a copy of her original when you learn he's been booted back home and she is a few thousand $'s worse off.
Go about your business safe in the knowledge that should you ever breakdown completely, if it ever gets that bad, or you just want your fizzog on t.v., there is always Jeremy and his team of experts there to extract you from the mire.
Hi Eck, I'm just a carer, and I agree with you when you say that no two sufferers are the same. My wife is unique, but it doesn't make her misery any more or less than anyone's else. That is the key, it is different and to mock anybody, carer or sufferer, is indefensible. That is what your last post did and it does you no justice.
Surrey Dreamer, I entered a relationship with a pd sufferer, and we married and have had a fantastically good 14 years or so. The disease has now kicked in big time and life for both of us is pretty bad (I had intended to say crap but thought it might be moderated)
There is no right answer to your situation other than yours. For what it's worth I think you did the right thing.
Surrey Dreamer, I entered a relationship with a pd sufferer, and we married and have had a fantastically good 14 years or so. The disease has now kicked in big time and life for both of us is pretty bad (I had intended to say crap but thought it might be moderated)
There is no right answer to your situation other than yours. For what it's worth I think you did the right thing.
I've read my last post again and I still dont see where I mocked a sufferer or carer.
Maybe its just my poor grasp of the English language.
The only person I intended to mock was the person who wrote the poisoned letter to Surrey Dreamer. Who, in my opinion, deserved it.
To Icarus, and anyone else who found my post offensive in any way, I can only offer a full and unequivicable apology. I would never intend to mock the afflicted. My post was intended to be supportive to Surrey Dreamer.
On the 2nd page of posts on this topic you will find I was quite positive.
Please don't get hung up on anything I say. I'm as stupid and ignorant as everyone else on this planet. My intentions are to be positive and uplifting. My last posting obviously failed and for that I am truly, truly sorry.
Eck
Maybe its just my poor grasp of the English language.
The only person I intended to mock was the person who wrote the poisoned letter to Surrey Dreamer. Who, in my opinion, deserved it.
To Icarus, and anyone else who found my post offensive in any way, I can only offer a full and unequivicable apology. I would never intend to mock the afflicted. My post was intended to be supportive to Surrey Dreamer.
On the 2nd page of posts on this topic you will find I was quite positive.
Please don't get hung up on anything I say. I'm as stupid and ignorant as everyone else on this planet. My intentions are to be positive and uplifting. My last posting obviously failed and for that I am truly, truly sorry.
Eck
Hi Eck
You are not ignorant or stupid and your grasp of the English language spot on. Your last post was not offensive and was precisely as supportive as you set it out to be. It certainly did not mock Surrey Dreamer. I thought it read very well. In fact I responded earlier with the quip that perhaps the lady in the States should share her knowledge of the treatment there if it is so much better than over here.
Perhaps Icarus would read your earlier response again and see it in a different light.
take care Maddie
You are not ignorant or stupid and your grasp of the English language spot on. Your last post was not offensive and was precisely as supportive as you set it out to be. It certainly did not mock Surrey Dreamer. I thought it read very well. In fact I responded earlier with the quip that perhaps the lady in the States should share her knowledge of the treatment there if it is so much better than over here.
Perhaps Icarus would read your earlier response again and see it in a different light.
take care Maddie
Maddie, thanks for taking the time to write. I've been fretting about this all morning. It got me really upset. I was trying to find Jeremy's number.
It did teach me one thing, to practice what I preach.
It just went to prove I am full of self doubt/esteem/respect.
I suspect that is a problem for a lot of us.
So I took maddie's kind words, a pinch of my own axiom and I feel tons better, about everything really. It might sound far fetched. It really took Maddie's comments of support to bring about a massive change in my thinking.
I can see Icarus's point, I didn't citate my post properly. Someone new to the topic, who didn't know what had gone before, may have found the whole Jeremy Kyle thing a bit flippant/mocking. I really am sorry to those who have taken it that way, I'll be more careful in future.
Eck
It did teach me one thing, to practice what I preach.
It just went to prove I am full of self doubt/esteem/respect.
I suspect that is a problem for a lot of us.
So I took maddie's kind words, a pinch of my own axiom and I feel tons better, about everything really. It might sound far fetched. It really took Maddie's comments of support to bring about a massive change in my thinking.
I can see Icarus's point, I didn't citate my post properly. Someone new to the topic, who didn't know what had gone before, may have found the whole Jeremy Kyle thing a bit flippant/mocking. I really am sorry to those who have taken it that way, I'll be more careful in future.
Eck
My profuse and unconditional apologies to Eck. I completely misread the post, one of the dangers of posting in the early hours of the morning, comforted by a wee dram or three! I was upset after a testing day, but that is no excuse for being stupid. Sorry Eck, you did nothing wrong.
Eck, you said nothing wrong I got the point of what you were saying and totally i agree with you 
Hey everybody! let's not get in a lather. I read Eck's letter the way it was intended - it was supportive, very funny (really made me laugh out loud!) and very perceptive. Yes I thought that letter from the Other Woman was intended to do as much damage as possible, but she has succeeded anyway in destroying not one, but TWO of my husband's marriages (she was the OW in his first marriage). So she has lots of her own issues. However, Eck's point about being true to oneself I shall read again and again. Life and relationships are very complicated and it's not always down to an illness. It can be about who gets in the mix.
Great post, Eck. (But your punctuation is rubbish!) x
Great post, Eck. (But your punctuation is rubbish!) x
Actually, that was a bit unfair. Your punctuation is just fine - it was just that sentence about the poison-pen letter that was a tiny bit garbled and could possibly have been misconstrued. Sorry!
I just want to say one thing with regards to all the personal information and feelings that have been posted on this thread. I have posted similar in the past, so here it is again.
Take care about what you say on any site, this one is no exception. I am a member of a couple of other foruus/fora, none to do with PD, and just by Googling something that was said by me,by one member of one of the other sites,about a proressive neurological condition and asking peopleto sign up to the 28 day petition on this site, I was found,in just a few easy clicks of a mouse.
I am now very circumspect about what I post on here.
Google some key words from any post on this site and you may be surprided, I was!!
Take care about what you say on any site, this one is no exception. I am a member of a couple of other foruus/fora, none to do with PD, and just by Googling something that was said by me,by one member of one of the other sites,about a proressive neurological condition and asking peopleto sign up to the 28 day petition on this site, I was found,in just a few easy clicks of a mouse.
I am now very circumspect about what I post on here.
Google some key words from any post on this site and you may be surprided, I was!!
My English is pretty bad. At achool I passed German and failled English. All I could say to that was "Ach Mein Gott in Himmel!".
Anyway we seem to have strayed right off the topic.
Anyway we seem to have strayed right off the topic.
Benji, while I take your point, I'm not sure what we've got to fear - a lynch-mob of angry PwPs at the door?
This thread has run and run, because of the title 'relationship in turmoil'. It is an emotional issue.
Although I would like to drop my own particular story now, I think this thread has been of great benefit not just to me but to a couple of other people who have found they can discuss the terrible emotional toll that can come with living with PD. It has helped me see that I was not going mad - and I've gained a friend.
The stresses and strains emotionally of living with a progressive illness that is not just a physical one, but affects the cognitive, behavioural and emotional abilities of the sufferer, shouldn't be under-estimated and yet as far as I am concerned there is no support out there. I am sure it is the same for partners of cancer sufferers and one would hope the cancer charities offer support for those partners - to deal with the fear, grief and anger that he/she goes through.
So let's not be afraid, and I hope that other OHs feel they can describe their own turmoil without being fettered.
This thread has run and run, because of the title 'relationship in turmoil'. It is an emotional issue.
Although I would like to drop my own particular story now, I think this thread has been of great benefit not just to me but to a couple of other people who have found they can discuss the terrible emotional toll that can come with living with PD. It has helped me see that I was not going mad - and I've gained a friend.
The stresses and strains emotionally of living with a progressive illness that is not just a physical one, but affects the cognitive, behavioural and emotional abilities of the sufferer, shouldn't be under-estimated and yet as far as I am concerned there is no support out there. I am sure it is the same for partners of cancer sufferers and one would hope the cancer charities offer support for those partners - to deal with the fear, grief and anger that he/she goes through.
So let's not be afraid, and I hope that other OHs feel they can describe their own turmoil without being fettered.
Hi to all who have contributed to this so far. I am Andy the PD sufferer that Maddie has referred to. Yes, Maddie has to endure some awful personal criticism that she has hardly deserved, I openly apologise to her, she has given me so much, I have so much to thank her for. This does not alter the fact that, at times, Maddie's behaviour has been difficult for me to comprehend, however, this does not excuse the way I have responded to it. There are other reasons for Maddie's behaviour, not only having to deal with my Parkinson's, it is only recently that she decided to share some personal detail that explains a great deal. It has been like the missing part of a jigsaw for me, after her sharing this, I don't know how Maddie found the strength to form a close relationship with me, or anyone. It would have been easier for both of us if I had known this earlier, but I fully understand why Maddie couldn't share it. There has been a lot of damage done, by me, during our time together, it remains a matter of time as to whether we can save the relationship, I sincerely hope so. At least we are still together so far.
Hi Andy.
This thread has made very interesting reading. It's good to hear the "other side" of the story re Maddie and yourself.
I try not to judge people when it comes to relationships.....it's easy to be critical of the behaviour of others, but when it comes to ourselves and taking our own advice, it's often a very different story.
I have been in an on/off relationship with a man for the past 2 years, so I think I understand a bit of what you're going through. My "ex" and I both have "issues" (physical disabilities and emotional "baggage") which make it hard to commit to a full-time relationship. I am the one with PD but he has another long-standing medical condition. We have tried keeping away from each other but it only lasts so long before one of us gives in and contacts the other, and we end up together again. At the moment we are just seeing each other occasionally as friends, but as for the future, who knows.....??
In a similar way to your situation, it's complicated. Far too complicated to go into on here! All I can say is that all the difficult issues from our past make us what we are today, and if we find someone who understands that and accepts us as we are, PD and all, it can be difficult to let go, even if there are things about the relationship which are not right. But do the positives outweigh the negatives? If so, maybe things can work out......
I hope that you and Maddie can resolve your differences and move forward, in whatever way is best for both of you.
Take care, and I hope it all works out for you both.
Kathy
This thread has made very interesting reading. It's good to hear the "other side" of the story re Maddie and yourself.
I try not to judge people when it comes to relationships.....it's easy to be critical of the behaviour of others, but when it comes to ourselves and taking our own advice, it's often a very different story.
I have been in an on/off relationship with a man for the past 2 years, so I think I understand a bit of what you're going through. My "ex" and I both have "issues" (physical disabilities and emotional "baggage") which make it hard to commit to a full-time relationship. I am the one with PD but he has another long-standing medical condition. We have tried keeping away from each other but it only lasts so long before one of us gives in and contacts the other, and we end up together again. At the moment we are just seeing each other occasionally as friends, but as for the future, who knows.....??
In a similar way to your situation, it's complicated. Far too complicated to go into on here! All I can say is that all the difficult issues from our past make us what we are today, and if we find someone who understands that and accepts us as we are, PD and all, it can be difficult to let go, even if there are things about the relationship which are not right. But do the positives outweigh the negatives? If so, maybe things can work out......
I hope that you and Maddie can resolve your differences and move forward, in whatever way is best for both of you.
Take care, and I hope it all works out for you both.
Kathy
Thank you Kathy, the very best of luck to you too.
Hi andyij,
There is always two sides to every story - I hope you both find contentment -
Best wishes,
Tulip
There is always two sides to every story - I hope you both find contentment -
Best wishes,
Tulip
It has been really interesting to see how this topic has gone. I think it really does highlight a need for emotional support and relationship support for PWP and their partners/families. In my experience there is none, which is why I find it so emotionally draining and frustrating. I think it is hard enough for people to deal with the physical problems that come from PD, but it is the emotional/mental ones that break you. In my case things are more on an up at the moment so I am glad I stuck with it, but I came very close to calling it a day at several points recently and I am scared of things going back to that state. Only you know what is right for you and what you can cope with and no-one should judge you for that. You can't care for someone else unless you take care of yourself (like the instruction on the plane to put on your own oxygen mask first). The worst part of this disease for me is how the PWP can change so much in personality (eg paranoid and depressed/withdrawn) yet the person doesn't recognise that they are any different and so they believe any problems are down to you. The times I have had to walk away from arguments and have cried myself to sleep because there is no arguing rationally or resolving things with someone who cant see what is happening to them. You just have to agree that they are right and forgive the person and it is difficult to keep doing that. It is also very hard to learn to love someone who is becoming a different person to whom you fell in love with and made a commitment to. I try not to think too far ahead and make the most of the good times now, with the hope that will be enough to get us through the bad times I know now will probably come again but also in the knowledge that I probably haven't seen the worst of it yet. I think if I'd known a few years ago what was to come I would have had the courage to walk away from the man I loved, because as it turns out that man isn't here much any more and it seems there is a pretender in his place who really isn't very nice sometimes, although it isn't his fault. My previous post may have seemed brutal and negative, but I hope also honest and realistic about what this disease can do to a relationship even when there is a long and happy past to remember and a lot of love and support from family and friends. I think it is great that there is an opportunity in this forum to recognise that it is normal to feel in turmoil and question your relationship in the face of a major disease in one of the partners, and maybe even to have to take the difficult decision to end the relationship to save your own sanity and health. It is just such a shame that people in this situation (and not just PD but other major illness) can't get professional help to resolve relationship problems (unless you can afford to pay for it). I want to stay happily married and for us to face the challenges of PD together and I so wish we had the skills and professional support available to make this more likely to happen. Good luck to all who are facing this turmoil, I truly hope you can find a way forward through it that is right for you.
Yes, I think there is a real lack of support for carers/families. It is the strangest thing to know that you are going to say the wrong thing, but still go ahead and say it, knowing you will hurt the other person, then be remorseful. I don't know whether there is a councelling service that can cover this adequately. Also, it must be exrtremely difficult to watch someone fade away.
In our case, to try and stop the repetetive weekly cycle of the Parkinson's cloud making us miserable, we have agreed to have a kind of "six-monthly" review. This way, we hope we can enjoy ourselves, and try and make a joint mature decision later. So far, this is proving quite successful, and has taken the pressure off us, for a while, at least.
In our case, to try and stop the repetetive weekly cycle of the Parkinson's cloud making us miserable, we have agreed to have a kind of "six-monthly" review. This way, we hope we can enjoy ourselves, and try and make a joint mature decision later. So far, this is proving quite successful, and has taken the pressure off us, for a while, at least.
AddledBedraggled, thank you for voicing so very clearly exactly what it is we all struggle with in one way or another, at one time or another. Not brutal, just true.
All the best,
Marie
All the best,
Marie