Hi Pippa,
My heartfelt thanks to you for such an eloquent, and thoughtful response. Crikey, I feel humbled by your reply. Indeed your pragmatic advice is very encouraging.
I am so sorry to hear of your plight too, the harsh reality of PD, and I feel your pain.
You clearly have a great amount of experience, both of PD, and life.
Thank you for sharing with me your thoughts. Shared experiences allow me the feeling of being ‘normal’, not in any self indulgent or pitiful way, but just knowing that you/I are not alone.
I am sitting typing this while everything shakes, my legs twitch and fling themselves about, the feeling is awful, I am finding it difficult to concentrate, my feet cramp, and now and then I fling myself back in my chair, my neck trembles and makes me feel sick. So I know for real the hideous nature of this illness, but at the same time, I am amazed by the love shown on this forum. It’s decent human beings like you Pippa, that keep me going, and I hope too that anyone reading yours, and others posts can draw some encouragement.
I am positively grateful to you.
Many thanks, because you have made my day Pippa. I feel grateful for the things I have, and pass my love on to you and your husband too.
All the best,
Chris
Hi Les,
Thank you for your post. It sounds as though PD gets on your nerves too! Pippa’s post was indeed extremely thoughtful. It is just so heartwarming for anyone to take the time to respond, so thank you.
Best regards,
Chris
@chris10 We are all fighting the same cause and if we can share comforting words with others who are having difficulty in coming to terms with it and they benefit from it, like you have, then our efforts have been worth while. I don’t profess to know anymore than the next person but if I can help people then I feel i’ve done my bit. Having PD can be frustrating not only to the individual but the people around you and your carer whoever that may be. On here, you are never alone, we all help one another in our own little way. Giving people reassurance is probably the best way I can sum up what this Forum is about. Take good care Chris, be positive and don’t let any negative vibes get in your way. All the best to you.
Les
Chris
I have read this thread a couple of times and have been considering replying. I was diagnosed almost 13 years ago and my wife left 6 years ago. She said she felt trapped pretty much from my diagnosis. We have dealt with Parkinson’s differently I met it head on and she wanted to put it in a box. I believe Parkinson’s split us but if there had been no Parkinson’s who knows what our future would have been. We all deserve to be loved and appreciated and I hope we all find that even if it takes some of us longer than others. If I can help anyone here in anyway by giving more details of my story then please feel free to ask.
Take care
Dear Chris,
I am so sorry for what you’re going through. You’ve had some lovely responses and good advice.
I don’t have pd, my husband does, as did my mum, and my husband had Parkinson’s when I met him. It’s how we met really so although he resents it, it is what brought us together so I’m thankful for that.
You’re still young, have a look at the fighting fit programme as they run weekend courses aimed at younger and working age people. Although it’s not going to directly help your situation it will give you a boost I’m sure and help put you back In control.
I wonder where in the U.K. you are? Perhaps some of your responses might be from people local to you. We would be more than happy to extend a welcome if you’re near us in Essex/Suffolk.
We wish you brighter days, you can get through this one day at a time x
I only joined a few minutes ago, but was interested in this topic, i was diagnosed about four years ago, I’m still able to live a normal life.
My marriage of 47 years is also under strain.
I would be interested if any research has been carried out as to wether people with Parkinson’s are more prone to marital problems than other similar illnesses, such as MS, Alzheimer’s, or Motor Neurone Disease.
Hi Kevtherev,
Sorry to hear you’re having difficulties at home. We have lots of information and advice on relationships and family life on our website, which you might find useful:
https://www.parkinsons.org.uk/information-and-support/relationships-and-family-life
We’d also recommend you contact our Helpline, as they’re able to advise on all manner of issues affecting Parkinson’s patients and their families. You can reach them via email at [email protected], or call free on 0808 800 0303. Lines are open Monday to Friday from 9am to 7pm, and on Saturday from 10am-2pm.
Hope this helps.
Best wishes,
Owen,
Moderation Team
Hi JonB13,
Thank you so much for your reply, sorry it has taken me so long to respond. Indeed I would very much like to hear your story. If it is similar, can I ask how did you deal with the loss of your relationship? The biggest thing I am finding difficult to cope with is the sudden loss, and the anger that has generated. I know the anger achieves nothing, and is merely self destructive, but I believe it is a mirror image of the intense love I had for my wife. Every day gets a little easier, but the anger within shows no signs of subsiding.
Please do share your story, and how you dealt with it, if you would be so kind.
Many thanks,
Chris
Hi Castle,
Thank you for your reply, and for your consideration. I live in Staffordshire. At present I have no transport to get to PD groups etc (my wife has had the use of my car since we split!), however I should be mobile again soon.
Indeed, one day at a time. Thank you for your best wishes, here’s to brighter days!
Many thanks,
Chris
Hi Kev,
Thanks for your post, and welcome to the forum. I am not qualified to answer your question unfortunately. 47 years! That’s a whole life time. As you can see from the replies here, life and marriage/relationships with PD can be difficult.
Is your relationship suffering as a result of PD? Please draw strength from others on here, I have only positives to convey, there are so many wonderful and genuine people on here.
All the best,
Chris
Hi Chris
I wrote a book about my first 8 years with Parkinson’s called Silverlinings. I will include here a chapter I wrote about my separation
Separation
This is the chapter I wasn’t going to write. There is no silver lining but it contains the biggest events of my life since diagnosis. When Liz told me she was leaving it was as though a fundamental truth that I based my life on had been disproved. As when Galilieo stated the Earth revolved around the sun, Liz announced that the centre of my universe was not where I thought. It challenged not only the beliefs that underpinned my relationship but shook the foundations of who I was. Since the diagnosis I had grabbed hold of the rock of my family. I defined myself as a family man and that definition left little room for Parkinson’s. It was part of me but held at bay.
I felt I had suffered my greatest defeat by Parkinson’s. Although Liz said it was not why she was leaving it had been the greatest issue between us since diagnosis and at that time the only thing that made any sense. It may be black and white but I blamed Parkinson’s and no longer knew what to do. The only certainty was my doubt.
Liz had left once before although only briefly. In November 2010 we went to Euro Disney by coach with the children and my Mum. Liz and I sat behind an elder couple on the coach. I had met the man before and knew he had Parkinson’s. I told Liz and then realised she hadn’t recognised his symptoms as Parkinson’s. He suffered from Dyskinesia and freezing. When we came back Liz needed a break with a friend and I was shocked when on the day Liz went to Teresa’s Rhi became very angry and shouted at her Mum. Rhi told me after Liz had gone that her Mum had told her about her feelings and fears. I tried to reassure her that her Mum would be back. After a week Liz came back, she told me that she was scared of me becoming like the man on the coach and that she wouldn’t be able to cope. I did what I aiways did tried to take it on myself. It was part of my identity to support my family and I could cope with my own fears if I could put someone else first. I said we could cope together and I could be strong for both of us. Liz and I coped differently. Liz had a better imagination and could look at other people with Parkinson’s and see me. She liked to put aside the things that worried her. I didn’t see me in others and didn’t picture myself with their symptoms… I also have a tendency to charge at things like a bull in a china shop and meet them head on. In hindsight I don’t think my assurances helped Liz. They did help me, giving me the illusion of control. Helping to maintain my self image as the family man supporting his family.
Our opposite approaches made it hard on both of us.
Back to 2013. I lived a lie for about two months as we waited so not to disrupt the children’s exams. Hiding feelings at home but falling apart at work. I couldn’t explain openly there so many assumed my upset was due to a worsening of the Parkinson’s. I had twisted my foot playing squash a month before this happened so I hobbled around and let them draw their own conclusions.
The children were amazing . When we sat down and told them that Liz was moving out they responded with love despite their confusion all vowing to support us both. They also supported each other and in particular Rhi and Shan supported their younger sister Ilona. I will always be grateful to Liz for our three children.
On the day Liz moved out I took my three daughters into town to distract them from watching Liz move. I gave them each some money to buy some new clothing. Rhi bought nothing and she spent the entire time helping Ilona choose. We had lunch in the pub and she asked if she could buy something online instead. A week later I handed her a package and she handed it back. She had ordered me a Tshirt as a present. The children mainly stayed with me that summer and I will always remember how much their love meant at that time. Rhi was probably the most confused yet her loyalty to me was constant. At the age of 19 she kept an eye on me, took me out for drinks and took more on her shoulders than I asked.
I had support from friends as well and am a lucky man. I did rebuild my confidence and self respect but it was a step by step process. No easy answers or quick fixes just taking each day as it came. I used counselling and it took a couple of years to get everything back on track. I suffered obsessive behaviour in night time use of the computer my resulting tiredness left me zombie like and could have cost me my job. When it came to it I managed to finally exercise some control. What doesn’t kill you makes you stronger? Well no actually this hasn’t made me stronger. but has reminded me of the strength I have.
Jon,
That’s amazing. I’m reeling in shock and don’t know what to say now.
Thank you so much for sharing that. Crikey, I really feel your angst. How utterly dreadful.
How ever did you deal with life after your separation???
This is very much the unseen side of PD, devastating and not obvious. Like a silent killer.
You are obviously a strong person indeed. Well done for even coping with that. Again I am humbled.
My thoughts are with you.
Best regards,
Chris
Chris
It was my friends and family that got me through. My writing helped not everything was shared but I put down my thoughts and feelings and it helped. There was no third party in our separation but my wife does have a new partner.
The Unspeakable
.
Monsters come in many guises
They can be all shapes and sizes
This a story of a monster previously known as unspeakable
This is the history of a relationship that is unbreachable
.
Insidious hideous lies in the shadows
My family can’t seem to see him now
When they report the things they have done
My children mention company of all but one
.
He lurks unseen emitting malice
His intentions cruel and callous
Yet to me they cannot speak
Not one mention of the freak
.
This monster takes human form
Most real monsters thats the norm
He can hide in plain sight
Even step out in the light
.
As I ponder my next action
Some of my faculties form a faction
Warrn to be careful a fraction
.I should consider their reaction
.
I find all not as it seems
Scenario nightmare not dreams
Intuitive I sense its schemes
He threatens current regimes
.
However he is all human
Despite all my assuming
They all know he is there
Protecting me children don’t share
.
For this man is no other
Than their Mums new lover
Although I have let her go
Cant share children Never No!
.
I realise I had been weak
So my children wisdom seek
I was not their bodyguard
They protect me although its hard
.
Monster in me jealous
Had made them speechless
To avoid hurting my feelings
Realisation sent me reeling
.
I cannot exclude from their life
New relationship of wife
Though it rends me to the core
Not one male parent there is more
.
A good man with good intentions
Good influence despite my apprehension
So I have opened my eyes
To childrens need I am more wise
.
Previously known as unspeakable
Now seen not a threat at all
In the light I can see him
Just a good man just Jim
.
I dealt with my life after she left stumbling through it not knowing what I was doing. It was hard I am not sure how I survived.
Thanks Chris, your words mean a lot. It certainly tests your faith in human nature. When you think you know somebody it does hurt but life must go on and it will!! I still have my children who are supporting and determined not to let this beat me.
Hi Chris,
I’m so sorry to hear about your situation.
I believe, the best decision in your case will be to go to the specialist, who may advice you a correct way of behaving to cope with all the pain.
I know how it’s difficult, but you need to be strong.
And never lose hope!! You don’t know what is around the corner. After a bitter and terrible divorce, plus the PD diagnosis, I thought I would never again feel OK. But recently my son got married. I was dreading the day (an understatement that!), knowing I would be there alone and have to see my ex with a new partner. But amazingly, he was there for me from the off - taking my arm when he knew I might stumble, finding a suitable place for me to sit for the meal, bringing me food and drink, while all the time remaining ‘in the background’ so to speak. Then he gave me a lift home when I left early. I realised that 26 years together cannot be just written off totally as a bad thing. There are still good parts left too. No one will ever know me like he did/does and vice versa. It is a matter of accepting the new way of things… But I have to say I was really surprised!
Thanks all for your encouragement and your loving replies. It has really helped me through this difficult period. Christmas has been a mental challenge like no other I have ever faced. Not a squeak from my estranged wife, not even a ‘happy Xmas’. I feel for everyone with PD, it’s such a wicked disease. It robs you of your normality. Horrible events in anyone’s life can be difficult to deal with, but PD gives you the double whammy of getting worse as you get stressed at what else is going wrong, like an ever decreasing circle.
I feel like I’ve undergone SAS mental training this past few days, but the comments, wisdom, feeling and just honest human decency you have all shown me on here has made the whole thing loads easier and kept me going. So a great big thank you to you all!
@chris10 It is fair to say that not only are you among like minded people on here but also people who understand what you’re going through and are here for you no matter what. One of my elder sisters has been diagnosed with Altzeimers which for my money is worse than what we’ve got. At least, to some extent, we’ve got some form of normality with our disease and are aware of what and where we’re at. Christmas, I agree, is a very challenging time of year, some would say they greet it with dread. Chris you are very lucky to have your friends on this Forum, we are here to answer your call when ever you need it. With the advent of a New Year AND a New Decade next week let’s hope that there is a light shining for you at the end of the tunnel. All the very best to you my friend.
Les
Hi Chris,
Are you in north or south Staffordshire? . We live near border of South Staffs so might be able to meet up in you felt like it,
regards, Pippa
Wow - John - what a powerful way of expressing such deeply felt emotions and torment and pain.
Pippa x