It’s with huge sadness I'm letting you know that after a severe bout of pneumonia Jackie, my deepest love and soulmate, passed away in my arms on Wednesday. Jax had been in Worcester Royal Hospital for over a week, with me hardly moving from her side. We'd talked, laughed, slept, held hands (almost all the time), and had the odd little cry.... together. Whilst desperate at times, it was an experience I will always cherish. The staff were wonderful at every turn. I felt honoured to be their guest and for them to have trusted so much of Jackie's care to me.
In hospital, we had a rollercoaster of a ride from crisis, to hope, and then to total despair when Jax died peacefully in my arms, without notice.
Over the nine years since diagnosis, Jackie has never complained. Together we worked with the MSA Trust and other professionals to do everything we could to manage this beast of a condition. We have constantly remained positive, kept active, and did the things people often said, we couldn't do. We loved life together, we cherished our life together and whilst not the retirement we both planned, it was the very best one we could have hoped for. If there's a single legacy Jackie could leave, it would be to help others facing the Beast, to understand that it’s not the length of life that matters, it's making the very best of life that matters. It's remarkable however, how often the two are linked.
Take care, Ian x
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I am so sorry. You were the first people to help us when my husband was first diagnosed and we always admired your positive, warm outlook. I lost Nick in September and feel for you in these coming months. Take care Sharon
In many ways this reads like the most beautiful eulogy. Quite how you managed to write something so eloquent at a time when you must feel completely lost and bereft is remarkable.
Thank you so much for telling us. I hope you won’t mind me saying that you did a remarkable thing by allowing Jackie to feel so safe and loved that she could stop fighting and find peace.
It’s a strange thing, but the peculiar and often insular MSA journey means that people we have only met through the forum often feel very real - like supportive old friends.
So it was for me with you and Jackie. You were amongst the first to welcome me and I often waited to see what you would say when someone raised a difficult or painful issue. I was never disappointed.
You were together a constant source of good advice, positivity, kindness and determination. Jackie’s passing is indeed a great loss. My heart goes out to you. Do take care of yourself. Gill x
Dear Ian my heart aches for you on the loss of Jackie
Your positive attitude to coping with this monster has been so encouraging to me and many others. Jackie is at last set free and I hope in time you will feel comfort in the knowledge you made her journey easier to bare. God bless
Dear Ian,I'm so sorry to hear of your loss. Although my husband has PAF and not MSA we were advised to join the MSA Trust group as there are no specific support groups as it is extremely rare. You were one of the first people who welcomed us on here. Your knowledge and support was gratefully received.
So sorry for the loss of your dear wife, Jackie. I would just like to say thank you for your positivity and courage through this awful journey we and our loved ones are on. Please take care of yourself and stay strong. Sending BIG hugs, Shirley
So sorry to read this, but you, absolutely, made the best of Jackie and your time during her illness. I hope I can say similar, eventually. Love, Adrienne and Ian.
I am so sorry that the day you had dreaded has come and i know how totally bereft you must be feeling. Hold on tight to the knowledge that you and Jackie helped to make this hideous MSA journey a little easier for many others who might otherwise have gone under and please on this site to continue to help with the knowledge and wisdom your lovely Jackie and you bought so dearly
Thank you Freda, I knew that is what you intended. This site was important to us both as we were the original members having encouraged the Trust to support the concept.
I hope to have the strength to contribute still because I know how much our fight with the Beast was helped by the support of others.
Hi Ian, I'm so sorry to hear you lost Jackie. The beautiful way you describe your last time spent together sounds like you have made it the best it could possibly be.
Like others have said, you were one of the first people on the forum to offer support with your kind words and good advice. My husband Paul passed away in 2021 after 7 years of living with this horrible disease and this forum and all the lovely people on it, helped me feel there was a wonderful group of people who understood what Paul and I were living through.
Now the time has come for you to know you supported your lovely wife so well and spent your time together as positively as you could have. Look after yourself and take time to grieve and also remember the wonderful life you had together.
I am there with you, how eloquently and tenderly you write. I am so sorry to hear of the loss of your wonderful wife who was your love and soulmate❤️
I too lost my husband a few days before Christmas, and as with you it came quickly and suddenly and in a hospital environment. My husband had always said that he didn't want to die in hospital, but I can only say that although his end was unexpected, the experience was professional, empathetic, serene and caring, and if there is such a thing, he had a wonderful death.
I am however, left with a huge empty hole and although family and friends have been so very kind and tried to embrace me into their lives, I miss my own unique life that I shared all my adult years alongside and entwined with my darling husband. Nothing can replicate that. I think dedicating the final years to fully caring and sharing with him this devastating disease, only goes to increase this feeling of loss.
I now need to build a different life without him, which feels all encompassing and impossible at times, but something I know I must do. When I cook, I cook for him, when I sit down I look for him, when I watch tv I talk to him, when I wake up I go straight in to him ...... it goes on.
But he is no longer here in person and I must accept that. But he is in my thoughts, soul, mind and heart and will remain so. I need to build around that to make my new life meaningful, and it will come.
As others have said you have been inspirational in encouraging us all during difficult times. I am sure you will get through this as I intend to. My thoughts are very much with you at this early stage of your loss 💙
To everyone else who is still on their journey. Stay brave, strong, resilient, compassionate and hopeful . But most of all don't lose your zest for life and love for yourself - you will need that. You are all in my thoughts. Maureen Xx
Hello Maureen, Thank you for your kind words. You are so right about the loss. To share someone's final year's of life and to be able to be together for so much time every day of every week is a privilege and a joy. And yet, as you put it so well, having been entwined with the one you adore only increases the feeling of loss.
Ian. I am so sorry to hear this. You have been so strong together journeying through this awful disease with positivity and energy to make it better for everyone else.
Time to remember all that you have shared together and the person that you loved, not necessarily the body that had let her down in these last years. Take your time. Your grief is your grief and whatever it looks like is ok, and whatever help you might need to process it is ok too.
Your wife must have been very special - when you say that she never complained, that is remarkable. Both of you have been an inspiration to me - you will be missed. Take good care.
I am so very sorry for your loss. You and your wife have been an inspiration to me. Your positivity has always been such a beacon of light. I hope, in time, you find peace. Take care of yourself and God bless.
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Dad is left alone on a ward, unable to communicate and we can't accompany him and we've been told no visits allowed. HELP please
The battle lost!! 
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