Feel I'm drowning in it all

Hi, my husband was diagnosed week before Christmas. I had suspected he had Parkinsons for the last 3/4 years and tried to get him to see doctor . He was in complete denial (which I understand) finally he saw consultant 2 years ago who told him it wasent clear if he had PD but to get his GP to refer him again if ‘I felt his symptoms were getting worse ’ we left the appointment with my husband saying ’ told you nothing wrong with me. I went to please you but that’s an end to it.’ 2 years down the line his shakes etc much worse he decided to see GP to ask for a tablet to stop shake in hands.
Thanks to the great GP we were back to see consultant (a different one thank God) who sent him for scan leading to his diagnosis week before Christmas. He was in total shock, though now after 3 weeks thankfully we are talking about it. I felt once it was confirmed he had Parkinsons I would feel in some way relief and could get on with supporting him. I dont feel that, I think I am in shock too. We were given lot of Parkinsons UK literature which is helpful however, scary when I read what may be ahead of him and I suppose me too. I feel I am drowning in it all and can only imagine how he is truly feeling. Sorry for long post not sure if anyone will see it I am not sure if I am posting in correct section finding navigating site a little confusing. Anyway I have got it off my chest.

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Hi Wanderer,

Welcome to the forum. We hope you find comfort, advice and support from your fellow members.
Sorry to hear about your husband’s diagnosis. It sounds as though it’s been a long road. We are here to support you both. Take a look at our page for family member’s here > https://www.parkinsons.org.uk/information-and-support/support-family-and-friends

We also have a helpline on 0808 800 0303 which is available from Monday-Friday: 9am-6pm,
and Saturday: 10am-2pm

All the best,

Elan
Moderation Team

@Wanderer, welcome, it is daunting for some people to take on board but at least you’ve got a diagnosis. It doesn’t mean you’ve got to change life style to accommodate it, it has to fall in line with your husband. Everyone on here promotes positivity which is no bad thing, also you will be told that everyone is different which we are and on our own journey if you like. There’s a lot of good people on here and as you’ve only just posted it will take a little while for them to find you but each of us has a different story to tell. If there is anything you want to ask we are all ears, you’re never alone on here, we are here to support one another.

Les

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Hello and welcome to the forum. I totally agree with cruisecontroller. The fact that you have suspected your husband’s PD for a long time does not mean it is not a shock when confirmed. A quick look at some of the posts in this category will show you how common your feelings are and with a quick look at some of the responding posts you will see very clearly a common thread in advice given ie one day at a time, don’t get bogged down in information stick to your immediate concerns for now, give yourself time to get used to the idea and so on. Take care

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@Wanderer welcome to the forum and agree with @cruisecontroller & @Tot so won’t repeat but we are here to help each other. I was dx 12 Dec 2016 and only remember to well all the different feelings and emotions we went through. All I can say is take it slowly and don’t worry about what may happen but concentrate on the here and now. Use the helpline, your GP and Parkinson’s nurse if you have one for advice on any of your concerns.
Try to keep doing what you did before and as and when there is a need to tweak how you did something then work on it together to find the solution. But please also give yourself time to have 'me time as it is important for your own wellbeing.
Take care and see you on and around the forum :blue_heart::sunglasses:

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Thank you very much for your response. It felt better to put this down. I have always been the person who copes the one everyone turns to for support and I’m good with that, but as you said this takes time. I have been reading posts others including yourself have written and I can see what good people you all are. Thank you

Hi Tot, thank you for your response and wise words. Yes it is easy to get bogged down with all the literature. It seems to be forever in your head. I am going the way of one day at a time as I think I can cope with that. Thank you

Hello jps, thank you for responding and your sound advice. We are lucky as we have a Parkinsons nurse, from what I have read not everyone has. She referred me (husband doesn’t use internet )to Parkinsons UK and the forum. I am glad she did. I feel you guys are the only people who truly understand how this crazy time feels. Thank you

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The truth about Parkinson’s is that few people are told the truth and that it hits the family and that you can fight back, maintain quality of life and autonomy. We helped set up Parkinson’s UK newly diagnosed program “First steps”. Ask them about it, it is being roled out nationally. I have 14 years of Parkinson’s and felt the same and my wife was terrified. I now run a charity operating in over 45 countries that proves that all the above is true. Your life will change but who decides how it will change… YOU
Fear comes from not knowing. PUK have excellent resources… WE run also a training centre for professionals (doctors, nursesm fisio) and a core message is that their job is to help us live our lives!!!
Alex
European Parkinson Therapy Centre

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Hi Wanderer, we all cope with illness in different ways so I don’t feel that I can give any advice but I have found that by making fun of myself and accepting IT for what IT is helps me cope better. I too was a little alarmed reading the Parkinson UK literature but it would be wrong of them to sugar coat the illness. My wife ( who has her own problems ) and I just go with the flow taking life a day a time although for us it I guess is a little easier as we are retired.
Chin up all the very best to you both. ps…always get things of your chest that’s what we are here for…each other.

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Hi Alman, thank you for responding.
Yes loads to take on board. We are still taking it in . Best wishes

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Thank you very much for responding,
I take on board all you said.
We are trying to take one day at time till it sinks in.

Hi keepbuzzing, thank you for your kind, supportive words. I am touched by everyone who responded to my post. I was feeling overwhelmed and truly felt better when responses came back. As you have all said this is the place to come for support from people who know how the person with Parkinsons feels and their family.

Hi Wanderer and welcome to the forum. My husband was diagnosed 4 yrs ago and I remember feeling just like you! I felt like I was in a tunnel with no light at the end of it and felt really overwhelmed.
Parkinson’s nurse Specialists are great as they understand how we the other half feels. Deal with issues on a day by day basis and find alternative ways to do difficult tasks. Good luck
Heather

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Hi Heather, thank you for your understanding. It has helped reading your and others response to my post. Knowing you are getting support from people who truly understand and don’t even know you makes a difference.
Things seam to moving fast now. We have a Lovely Parkinsons nurse and support from Parkinsons uk. I realise from reading through the posts we are very lucky, some are waiting a long time to get to see a specialist nurse. I called Parkinsons uk Scotland (live in Scotland) and spoke with their local advisor (don’t know how they term local as she covered a very large area) The lady also spoke with my husband, it was decided it would be a good idea she visited us.
This was one of the best calls I ever made.
She was honest and very supportive able to put my husband at ease to the point he opened up to her. He asked questions she was able to answer.
She was also able to help fill out the form for a Blue badge, arrange a meeting with DWP to visit us. At a time when we were floundering she was able to ground us. I cant thank her enough.

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Drowning? You will learn to swim. Yes, it can be tough at times, but there are a lot of better times to come as you work out what will help you both. There is help out there. A lot of this is learning to adjust to the situation, which you will. You are right: the PD helpline is amazing on so many fronts. Keep asking questions, keep learning, knowledge is power when it comes to dealing with PD. I wish you well.

Hi Wanderer
Just take a deep breath and then a large cup of tea or coffee and take your time reading the literature. I’m a carer for someone with PD. She’s had it for 27yrs and until 3yrs ago was still driving, working (at 73yrs) and completely independent. She has taken various cocktails of Parkinson’s drugs which managed the symptoms and until the last three years, you would only know of her condition because of the slowing gait and reduced facial movements.

The condition is so very arbitrary. Your husband may not get all the symptoms or problems, but knowing what could happen prepares you but please don’t let it scare you. One day at a time.

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Tiredcarer thank you for responding as you say learning to adjust. I am working on that and trying not to keep looking ahead just deal with what each day brings. Thank you

Hi klb, thank you for taking time to respond. I take strength knowing every one is different, having the response from all you wonderful honest people those who have Parkinsons and others who are there to support . I am trying to be positive as I can see from others it’s a way to deal with the whole thing. I can also see from several posts we are lucky to have a parkinsons nurse, it’s not the case for everyone. Thank you

I am newly diagnosed with Parkinson’s and I feel much the same as Wanderer. Reading this post was especially helpful

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