I’m not going to be anyone’s little girl anymore

[Annika]

Hi.

I don’t know if you even read these anymore. Anywhoo, my daddy was diagnosed with msa today, after being an ms-patient for about 6-7 years. I’m now 20 years old, so this has been going on since I was 13. I feel completely hopeless right now, and just how unfair can life be sometimes. My dad has been in the hospital for about half a year after he crashed. He talks complete nonsense, can’t eat or move properly anymore — however he still recognises me and my mom. If you have any words of hope or anything to offer, I’d love to know them.

It’s so hard to realise that possibly soon I’m not going to be anyone’s little girl anymore.

[Vera James]

Annika,
I am sorry that your father was diagnose with MSA. My children were in their early 20’s when my husband received his diagnose. It was very hard on my daughter as she was daddy’s little girl.
I believe there was a daughter of a patient who was going to start a fb page for Children of a parent with MSA. I am trying to get that information for you as that would be a very good place to join if infact they did get it started. Once I find out if it is still on fb I will get back to you . I know right now this comes as a shock to you , but know your not alone.

[Vera James]

Annika , the fb page is still there . It’s called “Kids of MSA. Everyone on there is 25 or younger. You do have to ask to be invited in as it’s a closed group. I really think that would be a good place for you being the age you are and that group can relate to what you are feeling.
https://www.facebook.com/groups/133820770123870
You can also stay on here and ask questions of this group.

[terry]

I don’t know how it is going for you now but my life is a living hell. My brother has M.S.A. He is in Hospice care and each day, sometimes each hour can be so different. My brother keeps telling me he won’t be here in a week. He says he will die. It is breaking my heart. He can stand with assistance for about five seconds. Any thing else he has to have help. Eating, brushing his teeth, bathing , everything

[Vera]

Terry, each of us here who have been caregiver to our love one or are now a caregiver/carepartner understand the feelings you are having. This is not just hard for the patient, but also for those who are close to them. My husband had a diagnose of MSA and as you said it can be so different. I would call it a yoyo illness, as we never knew from day to day or hour to hour what would happen. I was my husbands one and only 24/7 carepartner until he passed in 2003. It wasn’t easy but try to find the blessing each day. You may not feel there are any , but there are . Below is a motto I found and I lived by it. “Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says “I’ll try again tomorrow”

[k]

Hi there!
My dad was diagnosed a few years ago and his msa has started to rapidly progress. I’m 23 and still living at home, between my mum my brother and myself we have been able to keep dad at home and are hoping to continue this. He has been in Bethlehem hospital and will hopefully be coming home soon. We had a very strained relationship due to behaviours that the neurologist states being a result of his msa but have worked through these issues which I feel is very important. I have come to terms with the fact that he will pass in the near future, however I am struggling with issues of timing and the not knowing how long he has left.

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