Coping with PD

Hello, new to the forum so not really sure where to start. We have been married for 33 years, around 14 years ago my wife started to show very slight changes such only holding the steering wheel with one hand, walking with very small limp, just small things to start with. Gradually her symptoms got worse. To cut a long story short, the disease progressed to a point now where she takes a cocktail of 5 or 6 drugs, the usual ones we all know about, and now started on a patch. The last 2 to 3 years has been a living nightmare for her and me. She was an absolute wonder women who did everything for our family while our children were growing up, ran our technology business, I did all the engineering, and she did absolutely everything else. Everything is gone, she is just a shell of the person she used to be, she is so so angry at everything, she takes it out on me day in day out, I try provide as much support as possible but she has become so vile to me. I try everyday to support her, but whatever I do or say is wrong, she just shouts and screams at me blaming me for everything. About 12 months ago I became suicidal and unfortunately ended up in hospital. Every single second of every single day my wife suffers with PD, her life is intolerable, my heart is broken everyday to see this wonderful women end up like this. What am I suppose to do. She is so angry that PD has robbed her of her life, and will never come to terms with it. We are really struggling at the moment with finances, we are trying to get our house in a fit state to sell, I’m working really long hours to try and save our business, and travelling sometimes 4 hours a day as well. I sincerely apologise to anyone reading this, I just want my wife to be happy, but i just don’t know if she has gone past the point if no return. I do not know what to do anymore.

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Hello @Gray and a warm welcome to the forum community.

That sounds like a very difficult situation and I’m sorry to hear you are struggling so much.

Firstly please don’t apologise for offloading, that is what we are here for and I’m sure some of our members will identify with the issues, worries and feeling you have expressed. Hopefully some of them will be along soon to say hello, offer support and perhaps share their experiences.

We do have a dedicated section for carers, friends and family members on the forum so, if you haven’t already please consider taking a look and you may find some members with common ground in there.

You can find this at https://forum.parkinsons.org.uk/c/living-with-parkinsons/carers-friends-and-family/22

In addition there is some information on our website for family members of those with Parkinson’s which covers some of the common issues people raise and may provide you with some information and support. I hope you find it useful.

https://www.parkinsons.org.uk/information-and-support/caring-someone-parkinsons

https://www.parkinsons.org.uk/information-and-support/relationships-and-family-life

Secondly, I see what you have written about your previous stay in hospital and your past suicidal thoughts and this does concern me. Often these feelings can creep up and become overwhelming. particularly when life is difficult. If that becomes the case I urge you not to try to go through that alone. Please reach out to someone who can listen and offer you support - whether that be your local NHS crisis team or someone like the Samaritans (who you can contact on 116 123 - 24 hours a day)

Our helpline can also be a great source of support both emotional and practical - our helpful advisers are there to provide free, confidential, information and support on all aspects of life with Parkinson’s, they can also put you in touch with your Parkinson’s local adviser if more in depth support is required.

If it is relevant to you and if you wish, our helpline or local advisers can also help you explore financial support such as any benefits you may be entitled to which may help to relieve some of the additional pressures you are under.

Our helpline is open 9am-7pm Monday to Friday and 10am-2pm on Saturday (closed Sundays and Bank Holidays) You can contact us on 0808 800 0303 or at [email protected]

I do hope that helps a little. Please do keep us updated on how you are doing and feel free to continue using the forum as a source of information and support.

Take care

Corinne
Forum moderation team

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HeÄșlo @Gray
I genuinely don’t know what to say other than to please do make use of the resources Corrine has outlined. Again as she said, no need to apologise for offloading. The forum is a safe place to do that and hopefully it helps a little. My heart goes out to you both. My feeling is that your wife may benefit from one of the so called talking therapies because it must be so hard and utterly exhausting to constantly be living with so much anger though I doubt from what you write she would be very open to the idea. Please do look after yourself you matter too. Take care, I wish I could do more, ì really do.

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Hello Grey, I have Parkinson’s and I can relate with what you have written. It’s very sad, you have ‘lost’ your wife as you knew her. You say she is a ‘shell’ of her former self. That is how I think of myself. I have lost a lot of who I was to Parkinson’s.

There is one difference in our journey,I do not get angry like your wife. You say it is constant, very difficult for you to deal with, you have my deepest sympathy. I get angry occasionally, who doesn’t, and that’s not only people with Parkinson’s. I am wondering, does your wife see a Psychiatrist? I will explain myself. My Parkinson’s developed to include non-motor functions, depression, anxiety, apathy, plus much more that comes with depression. The Parkinson’s clinic which I attend is firstly a ‘movement disorder clinic’ lead by a neurologist, there is also a Parkinson’s specialist nurse. Some Parkinson’s clinics, where there is the funding ,also have a psychiatrist who specialises in Parkinson’s. It is now known that Parkinson’s can take a great toll on ones mood and mental health. I was put in touch with a psychiatrist working in my local health board, and now, he, and the specialist, and specialist nurse , are in contact. The psychiatrist, not being well enough informed about Parkinson’s , speaks to my specialist mostly about drugs, to make sure they are compatible. This has helped me greatly. It’s not ideal, for it to be ideal, a Psychiatrist trained to deal with Parkinson’s non-motor problems on the Parkinson’s team , would be the way forward.

Sorry Grey if I have made this too long and drawn out. It’s difficult for me to keep my concentration, plus I often can’t access the vocabulary I want. It’s there somewhere, but lm unable to recall.

The example I have given you of how a psychiatrist has helped me, may help you and your wife. It may be suggested that she sees a psychologist, or trained therapist. I will be linked to a psychologist soon, but the psychiatrist was able to prescribe medication to be taken along with my Parkinson’s drugs. Without the help of the psychiatrist and the medication he prescribed (dosage altered accordingly over months), I don’t think I would be here messaging you today Grey. No, in fact I definitely wouldn’t be here today. I was lost, totally rock bottom. It was the most frightening time, beyond description. You know. The help is there , help for you both Grey.

I hope that yourself and your wife see a change for the better soon. My very best to you both.

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Very interesting post MaggieT. I wish you well and you have my respect for meeting the difficult challenges Parkinson’s has seen fit to send your way with courage and tenacity. My own Parkinson’s road also has some non motor turnings that are decidedly more difficult to manage than my motor ones but pale into insignificance (almost ) alongside yours. Nice to know you are getting support even if still lacking in parts. Many years ago someone gave me a card in which they had written ‘may your life have just enough cloud to create a beautiful sunset.’ My wish for you is that at least some of the time Mr Parky lets loose his grip a little and gives you a peaceful and beautiful sunset whatever form your own particular sunset may take. Best wishes and look after yourself.

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