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

MSA – trying to be honest

on October 22, 2013

Andy and sam

I always try to be as honest as I can be in the blog bearing in mind that Rhanna reads my part of the blog every week as well. I’m always honest but of course like most parents I want to protect Rhanna for as long as I can.
Last week was meant to be a respite week for Andy and Rhanna but we made the decision that we didn’t actually want to be separated that far away so with a quick pack of bags we headed to Skye stopping over at Fort William o/night first to break up the journey.

When we arrived in Skye it was beautiful as always and you could see forever, not a cloud in the sky. Rhanna stayed with me a lot this time because I tire so easily so as you can imagine we did a lot of talking.

She asked me if I was afraid of dying, I said no, not of dying but scared of what I’m leaving behind because it took me such a very longtime to find happiness like this. Andy and I are the true love story and the reason that Jeremy Kyle isn’t always right…ten weeks after our first kiss we were married, seven years later we are still together, still united, strong and still in love.

Rhanna on the cliffsRhanna and Andy have a great relationship and when I die I know that they will be there to look after each other. She then asked when I was going to die, I said to her honestly I don’t know, she asked will I be here for her 18th birthday in April and I said I hoped to be, then she asked me about Christmas after this one and I said nothing, I couldn’t and wouldn’t promise that to her one way or the other. I can write this because we spoke about it, if Rhanna had asked me not to put it in the blog then I wouldn’t, after that we just lay on the bed cuddled up, Rhanna fell asleep and I cried as though my heart was broken.

When I think of Andy…well I can’t really because it feels like someone has ripped out my heart and thrown it in the bin, it’s just so unthinkable. So far this blog is a whoa look at me, it’s not like that, I think when you come home to reality, that’s the real issue.

TrinketsWhilst we were in Skye this lovely lady came over to me and had recognised me from the article in the daily mail. Gill told us all about her husband and how ill he had been and then we she read the article it all fell into place for her and she had that horrible gut feeling! She asked the medics up in Skye and sadly, yes her husband does have MSA, it was really odd because it was very lovely to meet Gill and her daughter, I wish it could have been under different circumstances but hopefully she will get the support she badly needs. Gill please resend me your email because the email I sent you came back to me, wishing you all my love and it was incredibly lovely to meet you, my own email address is, take care of yourself lovely lady, I will fondly remember the ginger haired beautiful lady shocking me in to silence, lol.

Everyday I worry about the strain I’m putting on my mum and Andy’s mum… It’s so easy to tell people you love them but I really with absolute conviction mean it of course Ali & Gordon are included in that statement, both sets of parents were so shocked when Andy and I got, together and I believe they thought it was all too soon! Now we wish that time would slow down. Let’s move on to happier events because I’m crying whilst I read this, which means I need to read it again!

Kiss Entertainment and Jaynah had a party night, Rhanna did a fabulous tribute to Amy Winehouse, which was amazing!!! Everyone loved it and thought that she was a star, which of course she is! The next “act” was a duo fi-lyn I know they sound a bit like a Chinese restaurant but this was actually my wonderful friend Lynn and my mental carer Fiona whom I’m beginning to think she needing a carer of her own lol!

Does anyone remember those dancing dolls? Well that was them! It was a really good night and had lovely prizes donated to us thanks to Ria at Falkirk For Mums and you must take the time to check out a great site Pink Thistle Accessories, Dana sells beautiful gifts, get your Christmas shopping without leaving the door, she even very kindly dropped the things we have bought at our home! Thank you Dana for making my shopping a little easier! Whilst I’m on the subject of shops, there is the best boutique EVER in Falkirk Zuri Boutique, get your hair, nails, make-up and one shop!! Fab!!!

If I could have one wish, just one little wish it would be to freeze all my love ones and watch them for just a little while, to let me give the all a gentle kiss, whisper a secret that only they knew, I would tell my baby that her life will be wonderful, to watch them smile and watch them cry. So as freezing time is not a possibility then I will cherish every single minute with a smile. Lots of love, Sam xx

We have had a lovely time in Skye, we met a lady who had read our story which helped diagnose her husbands MSA. It was such a shame, but in a way a blessing because they know now to make the most of the very valuable time they have left as a family.

Rhanna on cliff top edgeAll of you will have seen my mum and seen how tiny she is, sadly she doesn’t see herself like that. I think because her muscles don’t work anymore she worries about not being toned! Honestly mum you drive me to madness because you are beautiful, that’s what I would like for Christmas this year, for my mum to feel amazing.
Imagine if I could get a shop to open just for her and we gave her a chance to see herself in a dress again…. So simple yet I’m here crying for her.
Sometimes I feel like like that bloated and untoned and you go off on one. I know you don’t want me to see myself as anything less than perfect.

I did my Amy Winehouse tribute act at the disco and I felt like a proper star, I wish I could do that all the time, maybe in the summer I could work in a holiday place as Amy Winehouse and Dolly Parton who knows? Like mum says just need so done to give me a chance so fingers crossed!!

Mum is very tired now and sleeps an enormous amount of time sleeping but I figure she better sleeping then she not sore. Every week I like to say thank you to my friends because I know I’m not always the easiest person to get on with so thank you all so much I love you heaps and I know my mum loves you all as well!

My mum is a ray of sunshine with an aura like angels, love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

Skye sunset


7 responses to “MSA – trying to be honest

  1. Terry says:

    I try to put myself in my brother’s place sometimes and wonder what it is he is thinking. I know he is afraid to die. Not the dying but what it entails and this is something I can’t answer

  2. Fiona Thomson says:

    Glad you had a nice time in Skye, you deserve special memories, love to all as always, Fi xxxxxx

  3. wilma0750 says:

    Well what a big worry that was u getting ill in skye not been scared like that for a long time was so happy to see you home even if u did look like sh.. ur still ma bairn hen no metter what . I can see how tired your getting nobian thats jist a tad scary god knows wot uz r feelin like but a keep sayin tae u sumphy ur made o guid stuff that an ur a stubborn wee thing oh an ur no fat look through ma eyes hen an u will see a wee gem . Its nice that u met that lady kinda sad as well dont think you know all the folks uve helped along the way cos o that bloody msa . Hate hate It . It was lovely today being with u dont know whose memorys worse urs or mine an that bloody juice cup o urs if ad bin drunk nae problem eh lol . Luv u infinity sumphy xxxxx rhanna an andy am right here fer uz xxxxxxxxxx

  4. Katie Heyward - MSAT says:

    Ladies – another beautifully written blog. Thank you so very much for all you do to raise awareness of living with MSA.

  5. David Childerley says:

    Hi,so glad you managed to enjoy skye again, its a beautiful place. I to have MSA which I have had for about four & a half yrs.I am not afraid of dying, because as I have told my Neurologist that I will still be around in ten yrs time, Why, because that’s the deal I made with my higher self.
    OK so I have been forced into a wheelchair, I fall over very easily when I try to walk ,my speech is affected and without a little help I end up wearing as much as I eat. I can hear my carer calling now “have u got your Pinne on yet” Yes boss I reply.My carer is my wife of 45 years, who I adore, and it is her and my grandkids that help me stay positive. You see I was married at sixteen, was a father at sixteen and a grandfather at 39,so I will be giving up a lot if I give in to “IT”.I to get very tired, and I know my wife does. In fact I have just had a weeks respite care in my local Hospice, so that Irene could go to Spain for a well earned break. The care I receive in my area (Kent) is absolutely brilliant, so attentive to my needs so its a big thumbs up to all my helpers. The only criticism I would make is that now MSA Is being recognised as a growing concern I feel the fact it has only two nurses with the knowledge of MSA, that’s one for the north & one for the south very shot sighted. Again I am lucky I have “Sue Kirkin” who is purely a Parkinson’s nurse but she comes regularly to see me.
    Apologise for the soap box reply but I think the more our peers who have “IT” tell more of their own story it gives us all a benchmark on where we are on the journey.

    Love & Light

  6. Mary says:

    Glad you made it to Skye, which is such a special place for you. Thinking about you all,

  7. Judy Green says:

    Dear Wilma,as a mum I can so feel your concern for the way Sam pushes herself,and admire the way you support her in all her exploits,which undoubtably keep her going.Well done !!
    Love and prayersJudy x

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