myfamilyandmsa

Living with Multiple System Atrophy. A life limiting, neurological brain disease.

I’ve got this thing called MSA…

on November 20, 2012

Sam:
28th March 2012, this is the day that changed our lives forever. Having been unwell for such a while, I remember thinking ‘maybe this time, maybe they will have an answer’. The answer was possible MSA, we had no knowledge of MSA and we did the worlds worst thing…went home and googled it.
Then it changed to probable MSA … Now they just say MSA.
The words are said in long medical talk and without having a degree in neurology, you only hear PROGRESSIVE, FATAL and TERMINAL.

When I was told, I remember thinking breathe Sam, take a breath, shock, disbelief and sorrow hit me all at the same time.
MSA normally affects older people, which then made me think why? I was 37 years old, I have the most amazing family, not perfect but funny, loving, sincere and always there for each other. Andy and I waited till we were bit more ready to tell our parents, I cannot describe to you the pain I felt/feel every single time about those conversations.

Telling my daughter is without a doubt the hardest thing I have ever done in my life, she is 16 but already fought her own battles, born at 25 weeks and weighing 1lb 11ounces. She is a fighter but she is also my baby girl, my job is to protect her for harm, she’s my reason for breathing. I have never felt so helpless EVER, I was breaking my babies heart and with that, mine too. I would never hurt her, I’ve never broken a promise to her, so imagine when she asked me to promise it was going to be ok. I could only promise her I will never give up and we will stay strong as a family.

5-7 years isn’t a longtime but I know Andy will be there forever and I will right beside Andy and my daughter every step of the way, diagnosed with MSA has destroyed so much of what my family had but it will not beat us and only bring us closer together.


Rhanna:
To the disease which is known as MSA,
Two days ago you took a piece of my heart, my mum and andy sat me down and explained that mum had MSA … what is MSA? I know now but on the 26th June I had never heard of it.

I dont really know why i am writing to you, maybe because I am so angry with you, my mum is 37 years old and because of you she is going to die. She taught me to read and write, she gave me my love of reading, she read to me every night, we have sang and danced and had laughed till we cried. She taught me that no matter how many times you fall, you get back up. My mum is my best friend, she makes me smile when I think of her and you are taking that from us.

MULTIPLE SYSTEM ATROPHY, three words that needs more awareness and needs a cure.
I wish I understood why you picked my mum and I hate it when people say to me that god doesn’t put more on your shoulders than you can cope with, WHAT!!

My mum has given me the greatest gift, love and I know that even when MSA beats her she will still be smiling.
I cannot imagine my life without my mum and I cant think that far into the future.

I have been brought up never to hate, but I hate you, I hate what you are doing to my mum and I hate what you are doing to my family. This is my promise to you MSA, I will never give up raising awareness, trying to find a cure and helping other people who are sadly diagnosed with you!

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28 responses to “I’ve got this thing called MSA…

  1. annaw53 says:

    well what can i say you are without doubt one of the strongest people i know, i dont know how you live your life being so positive and caring after everything you have been through, you and your family are an inspiration to me and i will always be here for you and all of them. love you to bits
    anna xx

  2. Sharon says:

    Amazing.x

  3. Carol Bradley says:

    I know Sam andy and rhanna , I got to meet them a few weeks before and not a nicer family you could meet, even though Sam has a lot of trouble and worries with MSA , she does not give in and she raises money and awareness of it. Up until I met Sam I had never heard of it but I understand a little of what she,s going through now I have read up on it. You only have to look at her photos to see how much she loves her family and friends and they all love her back, I wish them all the best for the future and there fundraising to raise money for MSA. Love carol

  4. Tricia P says:

    I hadnt really known Sam, Rhanna and Andy for that long really when you came into their lives. As a nurse I thought I had heard of most things but you…..MSA…you were a stranger to me. I looked you up and then thought why? why do you drop in on peoples lives, why do you try and destroy people…I doubt I will ever know the answer to that but one thing I do know is that this time you have chosen a strong family unit……a family that will fight you with every breath they have….and I will never forgive you for what you have done to a family I have grown to love as part of my own…..

  5. Katie says:

    My mother was misdiagnosed with Parkinson’s in 1998. It is actually MSA but she is still fighting today and is 65 years old. I know she has fought with everything she has to stay with us and watch my son grow up. Hang on and we will find a cure!

  6. Stephanie says:

    Sam, your mum second mum. My Adopted mum we could even say;) I have only known you for about 4 years but in that 4 years we have done a lot together. Me, Sammy, Mum, You and Rhanna. Holidays, days out, and we are one big family. And it upsets me for any illness to strike anyone i love and care about, but MSA i mean out of everything in the world, why did it have to be that. Us as a big family will continue fundraising & fight and together we can come together closer and be there for one another. Remembering all the times we have all had and the memories that are always there. Sam your a fighter and i know you will keep fighting everyday, and thats what inspires people.
    Lots of love from the P Family.
    Steph Xx

  7. Robert Treat says:

    For years they thought my dad had benign positional vertigo. In February 2009 he was diagnosed with Parkinson’s disease and given some medication for it. When he continued to fall in spite of the medication they told us to take him to the hospital where he was diagnosed with MSA. He was shuttled back and forth between the hospital and the nursing home every couple of weeks, and died from septic shock on May 3, 2009.

    • andyc2204 says:

      Robert sorry for your loss, , thats the problem with msa being so relativly unknown,sam was diagnosed with pots syndrome 2009 and only by chance did we come across msa 2012 we raised our concerns to our gp, he investiged further and unfortunatly that was the illness that sam was diagnosed with, our gp had never even heard of it. !!
      hopefully through the blog and other awareness that we are doing the public will become aware of the horrible and cruel illness that msa is

  8. Tara says:

    Sam, I am 36 yrs old myself, not much younger than you. It’s not fair to anyone, especially you being so young. My mother was diagnosed 5 yrs ago, it’s changed our family as well. I just found out I’m expecting my 3rd child, my mother’s 12th grandchild. I know this time around though. her being a grandmother, she will be robbed because of MSA….it makes me so sad, frustrated, angry and helpless. I just want our old life back. My motto has been take one day at a time, guess that’s all anyone can do. I pray for you, my mom and everyone else w/ MSA that there will one day be a cure!!!

  9. Melissa says:

    Your story brought me to tears, I feel your pain and send you compassion and prayers. I lost my dad to msa a few years ago. I have a few msa awareness bracelets if you want any and a lot of car magnets, email me if you want any or if you have any questions. Livelaughlovemelissa@ yahoo.com

  10. Rachel bache says:

    My mum was diagnosed with MSA earlier this year and I can relate to everything you wrote. Yours words mirror everything I’ve thought, and I’ve been trying to fundraise aswell to help raise awareness. My love goes out to you and your family xxxx

  11. Carole Aitken says:

    My darling husband Geoff has MSA so understand everything you are going through, all I can say is THANK YOU from the bottom of my heart for being so brave to do this and sent you my heartfelt love and prayers, Carole xxx

  12. Bev King says:

    I am so proud of you Rhanna , love you and your mum , my beautiful sister with all my heart. If i could kick msa in the arse i so would ….with you guys all the way , i am so glad for Andy being in your lives , what a great selfless patient , loving, caring man xxx

  13. Narelle Ryan says:

    my mum (63yrs old)has suffered with vertigo for some years and got really bad when my daughter (only grandchild) was born 2008. Its the hardest thing to go through seeing a loved this way. I pray everyday a cure is found. I want my mum back. My mum lives in a nursing home. Theres no awareness here in Australia, it word of mouth. Thankgod for MSA Trust. I want to do more. Im trying to organise ordering t-shirts. I found a Dvd called Sophies search for a cure. helped me alot. I love my mum so much, having my daughter visit and my dad love him goes everyday to see her helps my mum . loosing alot of family and friends hurts too. Just being there for each other telling them everday u love them is the best medicine u can give anyone. love and prayers to all families.

  14. RICHARD GEARY says:

    Stay strong Rhanna, my wife died from MSA in 2009, but during her illness and knowing the eventual outcome, we had as much fun as was possible, and I cherish the good memories of 42 years of marriage and family. Do as much as you Mum wants to do, Love and best wishes to your entire family, I have experienced your grief…..

  15. tracey says:

    Hi there my mum has msa and is now bed bound but always has a smile for her grandchilden who have had the privelagle of calling her gran and of seeing how truly strong and brave she is, the diesease is the worst i could imagine but so little is known about it i to will fight for awareness and hope one day there will find a cure for this truly horrid illness my heart and best wishes to you all stay strong x x x x

  16. Cherren says:

    My beautiful, vibrant Mom lost her fight to horrible MSA. My heart and prayers go to all who are still fighting the fight.

  17. Marianna says:

    you made me cry…..i am 32 years no brothers and sisters and i lost both of my parents .My mother 2011 from hard attack and my father to months ago from MSA .Both very young only 58 years old.It pains so much but …..We must raise awarenessand find a cure for this devil disease.No child must feel what i felt seeing my father fighting with MSA.
    MSA YOU DESTROY MY LIFE I WILL NOT LET YOU WIN ……..

  18. Sharon says:

    x x x x x x you know how I feel about you and your family x x x x

  19. andyc2204 says:

    thank you everyone for your comments, safe to say that shes overwhelmed with the response, feeling pretty poorly but sure as soon as shes good she let you know!! all i can say is thank you for your continued support to Sam, Rhanna and I xx

  20. Lana Schimpf says:

    I have trouble hitting , like, because I HATE MSA, but I do like that you stay in touch.. Take care.

  21. Lori says:

    I admire your courage. I am a 43 year old female recently diagnosed with pots. I have other neurologic issues and have been concerned about msa. What symptoms did you experience that lead you down that path? When I’ve mentioned this to my doctors at the Cleveland clinic they have brushed me off. Any advise? Prayers to you. Cori

  22. Stuart Thompson says:

    Your words resonate massively with me…..i have a similar neurological condition but am not yet symptomatic. I take great comfort and inspiration from your account of the situation. My thoughts and love are with you :)
    Please feel free to be in touch at stuart.thompson40@hotmail.co.uk
    I have children too and they are not all aware of my prognosis……

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