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

Battling with Multiple System Atrophy

on March 1, 2013

Sam, Rhanna and Andy
Sometimes even with the best will in the world, sometimes you just don’t have the energy…
That’s how it’s been for me recently although I do always try, I have so many people around me that love me, that’s pretty amazing and def keeps me going. I have been totally completely overwhelmed by the kindness that people have shown me, ME!
Actually ME, which is a bit surreal because I’m just me and feel very undeserving of their kindness! Andy has been out pushing flyers for the party night and trying to push tickets, (easier said than done) anyway we’re getting there.

But that’s not why I started writing this, this week Andy met Karen and her daughter who run a beautiful boutique in Falkirk, Zuri Boutique where you can literally go and get everything for your night out, from make up, nails, hair and your outfit they have it all… Anyway Andy took me in after talking on fbook etc and I came out teary eyed but feeling like, well like me again, my make up was done, I felt lovely and I had been treated so kind!

Just as I was getting over the shock, my surprise wasn’t over, Karen gave Rhanna the most beautiful dress… Stunning and we are to go in the day of the charity night and get a make over!!! Unbelievable. This story would have kept me going on forever but the surprises for me weren’t over!
We have been given the most incredible raffle prizes from the loveliest of people who all deserve the biggest hug.

We went for afternoon tea at the Ochils Coffee Mill and OMG what a wonderful experience, our table was amazing, the company was amazing and the staff, each and everyone of them were wonderful, got a hug from them all and the food they prepared was incredible! Since going there we have kept in touch with them and they truly are a wonderful family.

Yesterday 28.2.13 I got baptised, I’m 38 years old so perhaps a little older than the minister’s normal candidate and we did the whole thing at home! It was perfect, totally perfect and I have no words to express exactly the difference it has made to me, I for sure feel more at peace with myself. Rev Mary Henderson is a wonderful lady and she made the whole ceremony very intimate, very personal and very perfect.

Just when I thought that things could not be anymore perfect at that moment, I received a message from Carole Aitken, a very special friend who has come into my family’s lives through MSA, saying she had organised a surprise spa day at Stobo Castle!

I actually can’t believe the things that have happened the last few days! I am no more special than the next person and no more deserving than anyone else, I’m just me, someone who hopes I can make a difference, who hopes that no other families will have to go through the pain that MSA causes and someone who hopes that I’m remembered for always pushing forward and most importantly that nothing was or is more important to me than my incredible family and friends.

This week has been amazing, mum has been poorly loads but if you ask her she will tell you she’s fine. It breaks my heart that her speech is getting worse and she made a video that Andy put on youtube, it should be watched by everyone because it shows you just how amazing she is.

Mum doesn’t ever do anything for herself and I know she is having a hard time thinking about not doing the same level of fundraising, she won’t stop, we know she won’t because she can’t, it’s her focus and whatever she decides to do is up to her.

I know I’m not meant to say the following but I don’t think this person would give me a row hehe. We were given the most amazing gift from Katey Wallace, she raised money for mum to allow us to book a cottage later in the year as my mum fell in love with Skye! So there you go hehe. You can’t give mum a row Katey and thank you to Anna for always being there for my mum, Nicola too and Sharon and our family and friends.

Mum I know has written about her baptism and what Carole did for her. These things were and are all beautiful, no one deserves it more. I want to let you see what my mum wrote for minister to say as its very beautiful, I’m sure she won’t mind.
Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

To you all,
For me this is a time to throw out the old and time to welcome the new.
I would like you to disregard and forget your new years resolutions because “you never keep them anyway”. But I’m not talking about making a new resolution to be attempted and discarded. I’m talking about a new way of life.
Since 28th March last year our theme has mostly for the main part been heartbreak, thoughts of lost opportunities and broken dreams, frustration, anger and mistakes. And probably, we haven’t made it easy for ourselves, sometimes we let rejection win, but we have never admitted defeat.
There is so much going on in my head and heart, I can’t even begin to explain. And everything seems contrary.
I know that God is supposedly in control but I wrestle with the fact that he has allowed this to happen. I am so angry that Rhanna will face heartache and I will be robbed of the chance to be the mother I want to be, but I know that there is a reason beyond my understanding. I am in the throes of punching my fists against god only to collapse in tears and have him make me feel better.
The realisation of dying stops you in your tracks and think about your doubts, your beliefs and actually I know now that regardless of the decision you come to make, the most important thing is, that it brings to you the inner peace and guidance you need to get you through your battle.
I wish I could explain a little better why getting baptised is important to me, it’s not for brownie points into heaven or an escalator to save my wee legs, it’s because I know it’s the right thing for me to do, and I couldn’t imagine sharing this with anyone other than the family and friends I have here today, love you all, to the moon and back again.
Sam xxxx

6 responses to “Battling with Multiple System Atrophy

  1. Judy Green says:

    Just watched your video Sam.That was so brave of you.I’ve been following your blog for a while and find you and your family an inspiration.My husband was diagnosed with MSA in we understand what a horrible disease it is.but like you we are blessed with a loving family to support us…..and the assurance of God’s I was so pleased to hear of your decision to be baptised and that you have so much support from your minister.
    it was good to read about your recent treats.As I say to Brian,we must make the most of the good days and put up with the bad!! I am so impressed by the tireless efforts that you three put into fundraising and publicising MSA..Love and prayers, judy

  2. wilma0750 says:

    Well samantha as you say wot a fantastic few days its been dont know where you got the strength for it amazing. your baptisim was just perfect coudnt have asked for more , the kindess thats been shown to you and yours is also amazing but its like a keep saying very well deserved and kindness costs nothing think folks are just happy to help in anyway that they can , but i do think samantha the time has come for you to rest up now from all the fundraising and spend your time with andy and rhanna luv u infinity hen xxxxxx

  3. Mary Burke says:

    As ever I am left humbled by your blog. Such strength of character, thank you and God bless xxx

  4. says:

    Dear Sam

    Congratulations on your baptisim I am sure it has given you great comfort.

    Sounds like you have been having lost of fun this week despite not feeling great.

    Hope your fund raising plans go well for you.

    Looking forward to your next inspiring blog.

    Take care and love to you and your family.

    Heather x x x x
    Sent from my BlackBerry® wireless device

  5. Pam Bower says:

    Dear Sam, Missing you but love catching up through your blogs! You are in my mind and heart always. Love, Pam xoxox

  6. Judy Green says:

    Hi Sam,I hope you are more comfortable on the increased pain pleased the carers are
    Working out well.That was a big change for you’re definitely not an “eejit”.i’m sure I’d have the same reservations and hope I’ll remember you’re experiance if and when we need to accept extra help..
    I hope the charity event tonight is a huge success.I’ll think of Rhanna being all dressed up and dancing the night away!!We have 2 granddaughters aged 12 &16 so I can imagine the excitement.They are both drama queens as well and are rehearsing productions at their schools at the moment
    Love and prayers,Judy

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