A month ago I lost my mom (55) to MSA. She had been diagnosed with Parkinson's disease in 2014 and was later diagnosed with MSA. Well, at least that's what they think. We still aren't 100 % sure.
It has been a rough couple of years, watching her getting worse and worse. It started with not being able to write anymore and resulted in not being able to walk anymore, not being able to eat anymore and the worst was not being able to talk anymore. We took care of her at home for as long as we could. We adapted our house (with money my sisters and I raised by organizing a benefit), we had medical caregivers at home and we kept communicating with her by using a paper on which the alphabet was written so that she could slowly form sentences. She never complained, she still enjoyed life even if her world was getting smaller and smaller each day.
Later, in June this year, she started having trouble with her breathing so she needed an oxygen machine. It kept getting worse and her illness was progressing really quickly. She always kept pushing her boundaries but she started feeling like she didn't have much boundaries left. She always looked back at how far she had come but this time she looked at her future and she told us she didn't see a future anymore. That's when she decided she wanted euthanasia. It was a heartbreaking choice but we respected her choice. It was hér life, her world that was getting too small. We knew we only had one month left with her so for the whole month we did everything we could. For that last month, she stayed at a palliative care unit where the nurses were so kind, so amazing. We were there with her 24/7, even slept in her room on our inflatable sleeping mats. We gave her everything she wanted, like getting her her favorite food and drinks, playing her favorite music.. She still enjoyed everything until the last minute. She still had a big smile on her face.
Sadly, on August 2 she had her euthanasia and so she passed away. She also donated her brain for research, hoping it can someday help others suffering from the same awful disease.
She was so full of life and never ever gave up. She kept pushing her boundaries and I will always admire her for that. And I really do hope that I have some of her strength in me.
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The loss actually just started to "kick in". I think I've been in some sort of denial for the past few weeks. That's why I'm writing my story (in short) on here, because people stop asking how you are after a while. They kind of expect you to move on while the loss usually hits you after a bit of time. And I needed to tell someone about her. Anyone.
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My love to anyone suffering from MSA and their families
Written by
marliesso
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I am so very sorry about the loss of your mum. It sounds like you did everything you could for her and she was very lucky to have such devoted children. I send kind thoughts and love. Helen xx
So sorry for your loss. It’s a cruel disease but it certainly sounds like she did it her way with a very loving and supportive family around her. She is at peace now and time will help to ease your pain.....sending you all lots of love 💕 xxx
I am very sorry for your loss..i too lost my dad this year to MSA related complicacy..dont lose your heart as she now lives through you..i know times like this are very difficult but be proud that you were there around her when she needed you the most..and when you are ok ,later on, try helping someone who might find your experiences useful..may god bless you and may your mother find peace and happiness where ever she is..
Thank you. I am also very sorry for your loss.. may your father find the same peace and happiness that he deserves. They both are at a better place now. I will definitely try helping others who are going through the same thing..
I join everyone else here in sending my deepest condolences. That must be so heart breaking. But you should be proud of how you cared for your mum during her illness and ensured she was as comfortable as possible. Hugs.
Sorry to hear of your mums death . MSA is without doubt a cruel , relentless disease. Hope time relieves you from some of the pain you are feeling at this sad time.
I hope someday they will find a cure for this awful disease. It really breaks my heart thinking there are so many people suffering from it. Thank you, Carole. ❤️
Hi, thanks for sharing, I’m so sorry for your loss. I also lost my mum Eileen to MSA last month. The grief hits me in waves, like reading your story opened the floodgates again!
Know that you’re not alone, share your grief with those closest to you. Your mum was able to decide when it was time for her to go, which put an end to the suffering. This is a blessing for her. Stay strong, your mum lives on in your heart and through your actions ❤️
I am also really sorry for your loss And sorry that the grief now hits you again by reading my story..
Yes, that is true. It is a good thing that she still had 'control' over one thing: the decision to put an end to her suffering. I kind of feel her around me, it kind of gives me the feeling she's at peace now. And I am sure your mum Eileen is at peace now as well.
Very sorry to hear of your great loss. But glad she is free from this dreadful disease, You did everything for her she was blessed with having such love and care. You need to talk about her.
MSA is so cruel. I care for my darling husband at home with carers, nurses etc, but he has had enough, I don't want to lose him, but understand how he feels. Now unable to do anything for himself, I hate seeing him deteriorate in front of me. We do take every day as it comes, but it is so hard to bear.
Thank you. I know we did everything we could, but I still have the feeling we could have done more. Even though I know deep in my heart that we couldn't have. We all have to keep talking about the loved ones we have lost, because like that we keep them alive.
It really breaks my heart knowing you are going through the same thing and watching your husband getting worse each day I know you are also doing everything you can, and I am sure he really appreciates it. You should feel proud for staying this strong and for understanding how he feels because it's not easy for him nor for you.
My heart goes out to you and your husband. Stay strong and keep enjoying each day. And I wish I did not have to say this, but make sure you tell him everything you want him to know before it's too late.
thank you so much for sharing during such a painful time.
those of us who are still on the journey with our loved ones can recognise so much of what you write. Its not easy to read but from the heart and will help all of us as we approach the same point
I so hope you’ve found some comfort through knowing so many people here have been touched by your words.
The journey is a difficult one; Jackie & I are still on it, but we cherish every moment together. At the end of your journey you now face a new journey; one for yourself, to live every day as you mum would want you to. Look back with a smile on your face thinking of the good times, forget the bad. Look forward strengthened by the knowledge that you did all you could for you mom. She will be looking down on you and smiling as well.
Thank you, Yanno. I'm really sorry for my late reply. I've started to move on with my life but, 3 years later, it's still hard. How has your journey been up til now?
Hello again; it has been a while hasn't it. We continue to plod on..Jax has obviously deteriorated over the three years but we still do a great deal and try to keep ourselves busy. Covid and lock down made things interesting however we still managed to see people throughout.
I'm so sorry things are still hard for you as clearly you need to move on with your life as you are still young and have so much living to do!
God bless you Marliesso its is an awful illness my husband was diagnosed in 2016 and it has slowly gotten worse his speech is going now just a wisper sometimes and walking is nearly over eating is becoming very hard i feel for you very much im am very scared im not sure what i will do at the end but you have been so brave i hope each day will get a little better for you god bless xx
What an incredibly brave woman your Mum was. She did this on her terms with her loving family supporting her. She will live on thru you. Take care of your self.
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And sorry that the grief now hits you again by reading my story.. 
MSA Clinics
MSA medication 
Mum now at peace...
My wonderful father and MSA
My Dad and MSA
