7 years and the struggles now over

[Niknak74]

It is with great sadness that I'm posting this morning to tell you my husband Paul passed away on Monday evening.

He was a vibrant, very lovely, kind and gentle man and at 52 shouldn't have lost his life, however this was his path.

Those who have lost their loved ones to this condition, will know I have such mixed feelings, utter sadness and loss at losing my husband of 17 years and relief that I don't have to spend another day watching him struggle and trying to make sense of why his body is failing him so badly.

I feel privileged to have shared 18 wonderful years with Paul and at 46 I know I have to soon begin to find myself again and carve out a life without him. I know I have the strength to do this, however for now, I want to remember Paul before MSA, a man with such a brilliant personality and a love for life. That's how I'll be honouring Paul going forward.

The forum has been an absolute lifeline for me, reading your posts, feeling your pain and your triumphs, so I want to say a heartfelt thank you to you all.

You'll never know how much it changed my life for the better the day I created my NikNak74 profile.

Love to you all and I wish you all strength and courage to keep smiling.

Nicci xx

[Yanno]

Hello, I’m always at a loss for what to say at these times. You have so bravely and eloquently spelt out your mixed feelings of utter sadness and yet relief that Paul’s suffering is over. Hold on to those lovely memories, be strong and take care of yourself. I so hope you find some happiness going forward. My thoughts are with you. Ian x

[Niknak74 in reply to Yanno]

Hi Ian

Thanks so much for your lovely reply and although its very hard for people to find words to say at times like these, you've beautifully found some fabulous ones so thank you.

I will look after myself, and I know its going to be tough for a while, however I do have wonderful memories and those are what I will be drawing on at each challenge.

Thanks again Ian xx

[Ruthi15 in reply to Yanno]

Hi just wondered how you were doing now?

[Niknak74 in reply to Ruthi15]

Hi Ruthi, wasn't sure if this was for me or Ian, but if it was for me, thank you firstly and secondly I'm doing okay and taking one day at a time with as much positivity as possible...I miss Paul every day, but have to move forward so that's what I'm doing even if I don't always do it well.

Hope your well and Merry Christmas to you.. xxx

[Ruthi15 in reply to Niknak74]

I am the same it is so hard I am going to lanzarote with my sister on Boxing Day just to read some books and a change of scene then I am going to start on raising funds for MSA which my husband died of that will keep me busy as too much time in my hands xx

[Niknak74 in reply to Ruthi15]

That sounds like a good plan with your sister. I'm off to the lakes with my friend on Monday for a few days to change the usual pattern of Christmas with it being the first on my own and I think I'll manage it a little better that way.

I hope you have a lovely time Ruthi in Lanzarote and can raise some smiles together. I know its really tough and will continue to be for a while, but we'll get through it and come out better on the other side. Keeping busys helping me get through too and it's good to be productive. Just don't forget to do lovely things for yourself next year as well as raise funds for MSA. Get to know yourself again.

Take care, safe journey and look after yourself xxx

[Ruthi15 in reply to Niknak74]

You too and yes we will do this and will be reunited with them when we are asked take care xx

[Diane831]

Nicci, I am so sorry that you and Paul have been on this horrific journey and my thoughts and prayers are with you. The saving grace for me was being able to remember Geoff as the real man he was and no longer the mix of symptoms and problems that were his daily life. This is your journey now and no one can tell you how to feel and what the future is, but rest in knowing that all you did for Paul was amazing and that anything that you feel is valid.

Diane

[Niknak74 in reply to Diane831]

Thank you so much Diane, that's so lovely and so true. I'm consciously trying to lessen the memories of Paul being ill and replace them with the man he was. MSA was only a small part of his life and I won't define him by it. He was much more than that and those are the memories I'll be drawing on in the coming weeks and months. I'm so glad that you did that with Geoff.

Thank you so much Diane xx

[Derkie54]

Hello,

So very sorry to hear your news.

You've done your best for Paul and to lose him at an early age is not good but he isn't suffering anymore as you say.

Stay strong and remember the good times you had together.

Our thoughts are with you at this time.

Regards

Derek & Lynn

[Niknak74 in reply to Derkie54]

Thank you Derek and Lynn, so very kind. I'm making sure the good times are exactly what I'm remembering.

Please stay strong too and look after yourselves.

Nicci xx

[Tusker1953]

Hi, I am so sorry to hear your news. Your post is written so perfectly and I know the relief you feel not having to watch the one you love struggle any more. Take care. Jan x

[Niknak74 in reply to Tusker1953]

Thanks Jan, I really appreciate that.

Nicci xx

[Courgettegrower]

I add my sympathy to previous replies. You will have done a wonderful job for the wonderful man you loved and who was taken at such a young age. So sorry. Jenny

[Niknak74 in reply to Courgettegrower]

Thank you Jenny, he was a wonderful man and I'm very lucky to have been able to share so many years with him, Forever grateful for that. He was far too young to go, but I know he's okay now.

Nicci xx

[Paul_and_Sue_Wood]

Nicci

What wonderful words.

A true testimony to what a beautiful person you are and I am sure Paul knew he was a lucky man.

Our hearts go out to you and your family as the journey ends for Paul, which we all will have to face at some point.

Thanks for the kind words about the forum where we all get help, advice and ears who listen.

Good Luck.

Paul & Sue

[Niknak74 in reply to Paul_and_Sue_Wood]

Thanks Paul and Sue. Your words are so very kind and really do help, as everyone's have on this forum.

We both knew how lucky we were to have each other and I'm very glad about that.

Take care too and stay strong yourselves.

Nicci xx

[chester2107]

hello so sorry to read this , he was very young , so lovely you had those years with him , but no suffering for him any more ❤️stay strong and as others say remember all the good times you had

love and hugs elaine xx

[Niknak74 in reply to chester2107]

Thanks Elaine, I will stay strong and remember all the good times. That's what's helping me smile through tears.

Love and hugs to you too Elaine xx

[chester2107 in reply to Niknak74]

Thank you ❤️

[Hidden]

My condolences to you snd your family. Your message struck such a nerve. Thank you for mirroring my own thoughts. Watching the man you love, disappear piece by piece is awful. But that being said msa has focused us on the important stuff. Huge hugs and hope you are ok. Sharon xx

[Niknak74 in reply to Hidden]

Thank you Sharon, it is awful to watch which is why we all try and do the best caring we can under such challenging circumstances. I agree MSA certainly does focus us on the important stuff, and we really do understand first hand that life is very short and we must make the most of it.

I am okay because Paul is now and I take great comfort from him not struggling any longer.

Thank you Sharon and hugs to you too.

Nicci xx

[Floosie5uk]

So sorry to hear about the loss of your lovely husband Paul, so young 😢. I can so relate to your words as I also lost my husband, Martin, at the end of August. He was a young 76 and I’m 59. We only really struggled for the last 6 months after diagnosis but it is still taking time to replace the recent memories of his illness with the wonderful 14 years before that. Prior to the funeral I took a lot of time to compile a virtual photo album that we then played as a slideshow at the wake, that really helped bring the happy memories to the fore. Take time to look after yourself in the knowledge that we all grieve differently so just do what feels right when it feels right. Big hugs xxx

[Niknak74 in reply to Floosie5uk]

Thank you so much for that. I hope your managing okay after losing Martin and are able to keep the memories of the man he was before MSA.

My sister suggested a video slideshow of Paul and I am doing just that for his funeral because I want people to remember him as he was, the funny, life and soul of the party and I want to remember him like that. So all his happy times will be shown and I think I'll take great comfort from that.

I'm sure I'll raise a smile when the photo of Paul comes up of him dressed in full 'Dame' costume for the local theatres Christmas panto (never a happier man to achieve 'damehood!') and dressing up as Santa for a few years to deliver presents to the children's ward in the emergency hospital he worked in.

Thank you for your kind words.

Hugs to you too xxx

[Floosie5uk in reply to Niknak74]

You may also find the muchloved website useful, if like us you choose donations over flowers. You can put your photos there too and people leave such lovely messages. Here’s Martin’s martin-John-evans.muchloved... - definitely some funny photos!

[Niknak74 in reply to Floosie5uk]

Thanks so much for letting me know xx

[Kaye31]

I’m so sorry for your loss and taken so young.My Jon is just 50 and just diagnosed, slipping quickly away. Your words are beautiful. I’m sure he will be missed and treasured for ever.

Lots of love xx

[Niknak74 in reply to Kaye31]

Thank you so much for your kind and lovely words and I'm so sorry about Jon. Please stay strong yourself and do whatever you can to look after yourself. It's so important to do that.

Much love to you too xx

[Kaye31 in reply to Niknak74]

It’s so scary. I’ve no idea what to expect. The deterioration in just 4 weeks in petrifying. I’ll do my best thank you x

[Niknak74 in reply to Kaye31]

Ask for help from palliative care, district nurses, hospice, the community support attached to your GP. The minute I broke down two weeks ago and asked Paul's palliative care nurse for help she visited the next day with his OT, and the district nurse manager, they had a team around him within 24 hours helping him daily with personal care and the re-enablement team was pulled in to get him out of bed and walking. It wasn't going to be that Paul could maintain a degree of recovery, but he had support, care and compassion at the time he most needed it.

If I can give any advice to anyone caring, its don't be afraid to be vulnerable and tell the professionals your out of your depth, terrified and need help. I'm so glad I did that and I know it helped Paul at his most vulnerable time.

Be strong and don't be silent xx

[Orla789]

Hello Nicci Thank you for writing such an inspiring piece. Paul sounds like an amazing man and I hope you can, in time, remember all the happy times and the memories of all the suffering for both of you will fade. As an MSA sufferer I take a lot of comfort in your words as my biggest concern is the pain I am inflicting, however unintentional and unavoidable, on my nearest and dearest. I hope they can have your positive attitude. At least I am 65yrs old and have had a great life. Paul and you are far too young to have to face this . Keep strong xxx

[Niknak74 in reply to Orla789]

Thank you so much for your kind words Orla.

The pain we feel as carers is only because of the depth of love we have for you and I would do it again in a heartbeat if Paul needed me too.

Don't worry, just concentrate on maintaining quality of life and accepting help if you feel able to when it's offered. Paul was too proud and reluctant to accept help at nearly every stage and it made his life so much more of a struggle, but I understand everyone has to do what they feel is right at the time.

I'm sending you love and a big hug, because your amazing to manage this condition and I have the upmost respect for you xx

Take care of yourself xxx

[Orla789 in reply to Niknak74]

Thank you Nicci. I am lucky to have such wonderful friends. I have always been a very independent person but now that I need it I have gladly accepted any help offered. I actually really recommend that change of attitude to other sufferers as it helps my friends to know they are doing something useful by helping us. So far so good with keeping my spirits up. This forum is so supportive.

[Niknak74 in reply to Orla789]

So good to hear that an amazing attitude to have and your friends are lucky to have you xx

[Ovx823k]

So sorry for your loss my wife has MSA but thank god she is not to bad. I’m not looking forward to the future but she is upbeat and funny. Let’s hope they find a cure for MSA. God bless you 🙏

[Niknak74 in reply to Ovx823k]

Thank you so much and I really do hope they find a cure too.

Stay strong and keep laughing and being positive if you can, it really does help both to keep that positivity up xx

[Helenhooter]

Hi Nicci

I'm so sorry for your loss. It's never easy losing anyone, whatever their age but you seem to have a good positive attitude which you must hang on to. Please be kind to yourself, you so deserve it. You must find time to grieve also and you're young enough to find happiness again. Don't let anyone deny you that. Thinking of you even though we've never met.

Love and hugs

Helen

😘

[Niknak74 in reply to Helenhooter]

Thank you so much Helen, just lovely words. I will be looking after myself as best as I can. Thankfully I have a family and good friends who won't allow me to do any other!

Thanks Helen and love and hugs to you too xx

[Andrashko]

Always makes me sad to hear when we loose another one because unfortunately we are all on the same path. I hope when it's our turn I can have as much love and compassion for life because you're right, we have to go on. My heart is with you, please take care and always remember the good things in life

[Niknak74 in reply to Andrashko]

Thank you Andrashko, that means a lot. Stay strong and keep positive on your journey xx

[SDSDYew]

I'm so very sorry. Sending you love and strength xxxx

[Niknak74 in reply to SDSDYew]

Thank you so much for your love and strength, I really do appreciate it xx

[clairebaby123]

i'm so so sorry for the loss of your husband...reading your post makes me breath a sigh of relief though...unless you know this awful disease...to watch someone you love go through this is devastating.... and no one understands...my sister is my best friend and I pray for the day she doesn't wake up....i'm so sorry...i'm sorry xxx

[Niknak74 in reply to clairebaby123]

I'm so sorry you and your sister are going through this. Its heart breaking.

Please make sure you have support for you both. I do understand why you feel that way, I really do and I can only send you my love. Here for you if you need to talk xxx

[1burtonst]

So sorry for your loss but he's at peace now no more pain and suffering X

[Niknak74 in reply to 1burtonst]

Thank you so much and he is and I'm very grateful for that xx

[Annietutt]

Hello. I am so sorry to hear your news. I can fully share your grief as my husband, Tony, died two weeks ago, having gone downhill very rapidly. As you say, they are no longer struggling and I take some comfort from that. We found making the video tribute that we played for his celebration of life service very therapeutic and it is something we will treasure. These are difficult days and I hope we both find strength in adjusting to life without our lovely men.Anne. X

[Niknak74 in reply to Annietutt]

Hi Anne

Thank you so much and I'm so sorry you lost your husband Tony too.

I took great comfort making Pauls video tribute too and made sure we celebrated his life beautifully yesterday at his funeral. So proud of Paul.

I'm sure we will find strength without our lovely men and remember how fantastic they were. Look after yourself Anne and please take care.

Nicci xx

[Annietutt in reply to Niknak74]

You too. X

[Rafaina]

I am so so sorry to hear of the death of your beloved Paul. Just know we are thinking of you. Sending you hugs x

[Niknak74 in reply to Rafaina]

Thank you so much Rafaina. So kind thank you xx

[Ruthi15]

Hi nicci it sounds like you have fabulous memories I lost my husband to this cruel disease on the 24th sept and I am also hanging on to the memories before msa i was married for 23 years 13 before his diagnosis I am sure our strength will come to carve out new lives although very daunting we will do as we know they would want that for us take care xx

[Niknak74 in reply to Ruthi15]

I'm so sorry you too Ruthi have lost your husband. It's so sad to have walked this path with our husbands but carving out a new life when we're ready is what they would have wanted with the most fantastic memories of our lives with them.

Take care too and look after yourself xx