It is with immense sorrow, I tell you that, My darling husband, Tony, passed away on Monday 30th December. He died at home , as we both wished. with support from wonderful Palliative care nurses.
The only consolation is that he is now free from this dreadful disease and at peace. The last few months have been very hard and difficult to watch, It has been a long struggle. From the first diagnosis of Parkinsons, 9 years ago to MSA.
Thank you all for support, it helps when so few people really understand MSA.
Thanks also to Samantha Pavey at MSA Trust, such a great support.
Also the team at the National Hospital of Neurology Queens Square.
Our journey is over, but I know for many of you, you are still along the road.
We took everyday as it came, the bad and the better ones, its not easy , but Nobody or No thing can take love for each other away.
Thank you all Chris
Written by
Elletheelephant
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Hi Chris. Thank you for letting us know. Well done for taking each day as it came and how good that in the end you were able to fulfill your wishes. I am just a month ahead of you on this next part of the journey and I wish you rest, support and a chance to look forward, forgetting the darkest of days and remembering the man you loved and the best of your lives together.
It has been so busy with arrangements and Christmas and family that I don’t really know what it will be really like yet. My son has been here for 2 months but leaves on Thursday and so I feel that my new life starts then!
I find that as yet I can’t be sad that he has gone because of the limited quality of life he had, and as a family we have all just got back to remembering the great man he was. There are still lots of practical things not quite sorted out like probate etc but things are moving slowly.
Looking forward I feel like I have turned a page in my life and there is nothing written on it! I am going to go very slowly deciding what to do. I am not agreeing to any regular commitments and just doing what I please for a while!
I hope that you are able to see forward soon, but take all the time you need, we are all so very different.
It does get easier but not quickly. There are so many emotions to work through. I think with a stinking disease like MSA the knowlege that they are no longer suffering must help a bit but does not stop you wishing for them to be still here and healthy again. I hate to say it but the second year for many people is the worst when you think you are doing well and some silly little thing like a familiar car number plate sneaks up and hits you with a brutal reminder that you really never will see them again. Then you find yourself laughing at a memory and then you can start to live again.....just as you know they would have wanted you to. The essential admin jobs help by acting as a sort of anaesthetic. Best wishes to you and Diane. I now live in a different place with a new partner and we both know that we are happy together because we both share the experience of losing a dearly loved partner after a long and happy marriage. Both their photos are on our wall and we often share and enjoy happy stories from our previous lives. They never really leave us but it does get better.
Thank you, I feel broken at present, empty, and raw, just praying things will get easier with time. I’ve done this before ; I lost my first husband 20 years ago, and now my darling Tony. The grief is the price we pay, I know that. Just trying to keep going , xchris
Time,” the Captain said, “is not what you think.” He sat down next to Eddie. “Dying? Not the end of everything. We think it is. But what happens on earth is only the beginning.”
– Mitch Albom
God bless lovely. My heart, love, strength and peace go out to you . ✨♥️🌈✨
So very sad at your loss. As so many have already advised, the grieving never ends but you will find a time will come that you realise it's ok to laugh and smile. Move forward slowly and find time for you. For so long you've been wife, mother, carer and supporter but somewhere hidden is YOU. Tony would want to see the person he married again enjoying life and believe this would make him happy.
My family continually remark on how good it is to see me relaxed and smiling again. I miss my hubby everyday and love reminiscing about our 43 years together.
Tony will always live and be with you in your memories. I have often wondered how it is that we can feel so much pain and still survive, and the answer of course is that we have also the ability to love deeply. The pain eases when I feel thankful that my beloved came into my life and we shared so much joy. I would never give up those memories no matter how great the pain of loss.
Take each day at a time, and simply remember how great it was, and then think what Tony would like you to do.
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Since when does MSA have a silent A in its title?
Understanding potential diagnosis
Pure Autonomic Failure 
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