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

MSA…staying strong.

on November 27, 2012

The Op was scheduled for 13.30 on the Thursday and should have taken 20 minutes, but I came out nearly an hour and a half later at 14.53. Everything was going to plan until my blood pressure dropped too low so it was a case of fluids, fluids, fluids and drugs!

At 3.19pm. I get to text Andy to tell him I’m back in the 3.25pm, he’s right beside me!
I’ve texted Rhanna, my mum and Andy’s mum.

Every single person I came into contact with me were wonderful, Forth Valley Hospital has in my case been a blessing. In the theatre there was my neurologist, urologist, anaesthetist, radiologist, 3 nurses and the rest of the folk I have no idea!
A minor op all of a sudden didn’t seem so minor!!!!

MSA – Staying positive isn’t always easy, staying strong also isn’t always easy but having spoken with so many people with Multiple System Atrophy it never fails to amaze me how strong people are, how incredibly brave and more than anything despite their own issues, incredibly supportive to each other and their families. I wish we could organise a national get together. Meet the people we talk to regularly and share our hopes, dreams, and a hug!

Today which is Friday I’m sore, incredibly tired and finding it hard to concentrate ….
Andy’s mum and dad have been over, they always make me smile, make me aware that the reason their son is so special is because they are to.

My mum, she came with chocolate buttons, for my whole life she has been able to make me feel better and today was no different.
Thank you to everyone for all your messages, whether through the blog or through texts and Facebook. Much love and hugs Sam xxx

The thought of losing my mum is unbearable, she’s my heartbeat, I love her so very much. We have always been very close, and we were always doing things like ice-skating and shopping. We still do things, just a bit different now, I’m a young carer now so I help out with mum’s care, help her with her make up and stuff so she feels pretty.

My mum is in a wheelchair all the time now, her speech slurry and quiet and she has problems choking so she has a soft diet. She pushes me every day to be the best that I can be and will not allow her illness to get in our way of moving forwards, we just learn to adapt.

Every day I worry about my mum, every night I hope the next day will be ok and a better day for mum.
I hate to see her suffer, I hate watching her pretending she’s okay when she’s not.

She is my mum, my inspiration, my angel, my heroine and everything I could ever hope to be.

9 responses to “MSA…staying strong.

  1. wilma0750 says:

    Your are a truly amazing daughter and the courage and strength you show is asstounding even on the days that you dont want to be botherd with if only i had the power to make it all better for you sumphy but i dont and that i will be truly sorry for as long as i live its a mums job to make things better the happy cream an plasters defo no work i just wish well you know what i wish for maybe theres a fairygodmother out there somewhere that has the power to help cos all i can be is your mum luv u infitity xxxxxxxxxx

  2. wilma0750 says:

    Rhanna your are a minnie version off your mum and your courage well wot can we say u got the the courage off a lion and the heart off one too . i think that sometimes u even surprise yourself with your bravery dont think im that brave id like to be tho so all i can do is to be here for you and your mum and andy keep up the fight luv u infitity xxxxx

  3. joanne arliss says:

    My beautiful dad passed away 10 years ago from this horrendous disease after suffering from it for 6 years, initially being diagnosed with Parkinsons disease.
    My mum and I cared for my dad aswell as great nurses from the hospital and our local hospice, it was the hardest job I will ever have to do. Watching a hard working family man turn into a bed ridden shadow of his former self.
    I send you, your mum and family my love and strength. I will continue to follow your blog and wish you all the best xx

  4. emilene says:

    Dear Sam and Rhanna

    I am following your blog from afar and would like to send you both the biggest hug today! My friend Sonja also has MSA and she is just as wonderful and brave, she keeps us informed via her own blog and I just have so much respect for her as well. The fact that you are all letting us into your lives in this very personal way is helping to educate and raise awareness for MSA – an illness that not many people are familiar with. My thoughts and prayers remain with you!

    Lots of love!

  5. Shirley Somerville says:

    My mum passed away 4 years ago same as you there every step of the way keeping each other strong miss her every moment of every day but cherish the time we had. You are a credit to your mum sending lots of love xxx

  6. Mary Ann Kotara Schirmer says:

    Rhanna, you are a blessing for sure for your mom! My husband has MSA and I am his primary caregiver. It’s a difficult thing for both patient and caregiver. Keep your strength up and keep encouraging your mum to fight this horrible disease! I tell Gary to fight MSA, not me!!! So far, he’s doing a marvelous job as he was diagnosed 6 years ago. He’s totally dependent on me now, but he is still with me in heart, mind and soul!!!

  7. Carole Aitken says:

    My love and prayers to you Sam, Andy and Rhanna, you are so inspirational especially you Sam with this blog, my darling husband Geoff started symptoms at age 55 and is 61 now and it is so heartwarming to hear your story, you remain constantly in my prayers and you give us all such strength to hear how you are coping with this vicious disease love Carole Aitken and Geoff xxxx

  8. Karin says:

    Sending you big hugs from the tip of Africa.

  9. Vikki Hanning says:

    I just saw your blog tonight. You are in my thoughts, my Mum was the most amazing person too and passed away 6 months ago from MSA , I miss her every minute x Stay strong you will be a huge source of strength for your Mum.

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