my brother

[Way3121]

after 5 plus years, living and struggling with msa and ataxia, my 55yo brother passed away yesterday. Though he died trying to fight , pneumonia, sepsis &an infection, I just want to vent my anger at msa and ataxia, for taking my world away , in my head I’m screaming at you!!. He didn’t deserve you to slowly take over his body, and reduce him to bed bound, to have his dignity slowly stripped away from him, to take his voice, I could go on , but from today I’ve got to begin the tasks of making arrangements, getting my anger out , just a little, at this cruel thing, in this forum, I’m hoping will give me the strength to deal with the coming weeks . My brother was my last family member, my best friend, my constant, my world .

[Ruffner]

I hear your anguish and feel incredibly sad that your brother lost his battle with MSA. He is finally at peace but your battle with grief continues on. I hope you can get to a place where the good memories of your brother replace the painful, difficult memories of the last 5 years. Thank you for reaching out here - your brother's story is meaningful to all of us.

[Way3121 in reply to Ruffner]

thank you , he wanted to be with my parents, he is now and his struggle is over

[Derkie54]

Hello.

So sorry to hear your news.

Our thoughts are with you at this sad time, try and remember the good times you had with your brother.

His pain is over, look after yourself now

Kind regards

Derek

[Way3121]

thank you , derek

[Gill-C]

Anger is entirely appropriate in the circumstances. Vent here as often as you like! Your brother had the comfort of knowing how much you loved him and, speaking as one who will eventually face the inevitable decline and loss of dignity that go hand in hand with MSA, the unswerving love of those close to you is something to truly treasure. I send you my greatest sympathy and hope you feel in some way supported by this geographically distant, but emotionally close community.

[Way3121 in reply to Gill-C]

thank you for your kind words, they mean a great deal, my heart and mind will forever be with msa sufferers and the families

[Helenhooter]

Hi

I expect that your brother was extremely thankful to have you. I'm so sorry for your loss. Sending sympathy and love xxx

H

😘

[Way3121 in reply to Helenhooter]

thank you x

[chester2107]

so so sorry for your loss, he is at peace now sending love and hugs 🤗 x

elaine

[Way3121 in reply to chester2107]

thank you xx

[writerinlimbo]

This is such a hideous disease and anger towards all that it stole from you and your brother is entirely appropriate. So sorry for what this has put you both through.

There is a poem by Michel Faber called Don't Hesitate To Ask. To me, it perfectly expressed the anger this brings out in the survivor and best summed up the senselessness and cruelty of the disease. I won't include a link to it in case this is seen as spamming this site, but google it (you can read it online at Scottishpoetrylibraryonline).

Even if you don't normally read poetry, this may help.... unless you're easily offended in which case perhaps best not to.

[Way3121 in reply to writerinlimbo]

I will look it up , thank you, x

[Bizzyissy]

So sorry to hear, you may have lost him but you will cherish the memories, good times and bad. He will be looking down on you thanking you for finally being able to to take the pain away! Xx

[Way3121 in reply to Bizzyissy]

thank you x

[Frenchoak]

So sorry, and you are absolutely right to be angry at MSA and what it does. I'm just starting out on my personal horrifying journey with it, but reading your post just demonstrates what love you gave to your brother through his. I can only hope for the same. It is now time for you to recover from sharing his journey and to look after yourself as best you can. Take it steady x

[Way3121 in reply to Frenchoak]

thank you x

[TK-67]

I'm so sorry - I hear your anger. We had the same with mum, the unfairness of it all, the fight knowing what the end point would be. Please now take care of yourself, go back to the good memories, they are there. Reach out for help if you need it, I had bereavement support from our local hospice, it did help to channel all the emotions I was feeling.

[Way3121 in reply to TK-67]

thank you x

[Madauntie]

so sorry to hear your sad news. Anger is a normal reaction but please don’t let it become your over riding feeling. Take time to grieve and remember the good days before MSA. Your brother is now free. Take all the time you need and focus on the good memories. My prayers are with you 🙏🏼🙏🏼

[Way3121 in reply to Madauntie]

I’m less angry today , thank you for your message x

[Hidden]

I know it's raw, my husband has only been gone a weeks. MSA takes piece by piece but the person you loved was still there. Our loved ones are free from this that's we need to hold on to. No more pain, no more being unable to move and being reliant on others. My husband was trapped and was unable to move. He hated not being seen and being free to do all the things he wanted to do. Hold on to the knowledge that you did all you could to keep life normal. You were able to make ever day count, you loved and supported him everyday. The pain and anger we are all left with will slowly ease. Big hugs and condolences to you and your family. Xxxx

[Way3121 in reply to Hidden]

thank u , all true words xx

[mandg]

Sorry for your loss.

[Monkeyfeet1]

so sorry for your loss. Such a young age xx

[Way3121 in reply to Monkeyfeet1]

thank you, far to young xx

[Polesden11]

So sorry for your loss. Try to concentrate oonn the wonderful memories you have and the pain-free state of grace in which he now is. Thinking of you...Sue