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

MSA – a reality check

on April 20, 2013

Rhanna, Andy and Sam at Stobo castle
Rhanna and Sam at Stobo CastleStobo Castle… We were very kindly offered an overnight stay with treatments and dinner, this was because of Carole and Geoff Aitken who wrote to the castle telling them all about our family. After what had happened with that neurologist this was a much need break. I honestly, hand on heart can’t think of one bad thing to say about our stay there, every single person went out their way to help us and the food was delicious.

Andy's mealWe had the funniest experience at the dinner table, lets just say that when Andy’s dinner came out Rhanna and I were both very childish, I’ll put the picture on and you can judge for yourself.

Rhanna and Sam with Mr WinwyardWe had back and shoulder massages, facial massage and I also had a warm paraffin shoulder massage. We met Mr Winyard who was incredibly kind, took the time to speak with us asking us lots of things about what could possibly help, he gave Rhanna a Stobo teddy so she was incredibly happy! Never in a zillion years could we ever have done anything like it so we are eternally grateful to Carole & Geoff Aitken for arranging this wonderful treat and to all the staff and Mr Winyard for such a wonderful time thank you so very much.

Rhanna and a giant cup cakeOn Saturday we went to The Ochils coffee mill for afternoon tea. OMG it was amazing, amazing, amazing!!!! The photographs don’t do the day justice but they help. 🙂 Rhanna loved it and had a beautiful day!
Rhanna and her birthday car
Then we had Rhanna’s birthday on Sunday which was just perfect, she had her first driving lesson and as she drove back into the street there was a little car all decorated with balloons and banners! I know it seems a very extravagant present but it was all made possible by the wonderful Wallace family, anyway now my baby has her own little car (Matilda Matiz) she’s not new but she’s an orange ;-)(ahem) shout out to MSA trust, lol and Rhanna is still in a little bubble with the kindness of people, she’s been out for two lessons and Anna and Andy have taken her out as well.

Rhanna's birthdayIt’s weird because I should be over the moon and I am, but as I watch her getting older and I feel myself getting much weaker it scares me to think of what I’m going to miss, I can’t think of it right now, we’re a team, I know we have our moments but we are the strongest team, an unbreakable bond that not even MSA will be allowed to break for as long as possible!
I’ve been poorly since we came back, tiredness really and unbelievably forgetful!
The post just arrived and our DS1500 arrived, basically it tells DWP etc that I’m not going to get better…Ouch to the reality check.

Rhanna's birthdayThis has been an almost normal this week hehe well not almost normal because its not every week you start your driving lessons, have a spa day, the most amazing unforgettable afternoon tea and a CAR!
Then of course appear as an extra in Waterloo road and River City. :-)I’ve been so lucky this week unbelievably lucky and I’m very appreciative of it all, I promise I would give it it all back in a heartbeat to have my mum back healthy and able to do everything again.

The doctor told my mum she should speak with us all to tell us that things are moving quickly, no one knows why, it just is. My mum said its a shame MSA didn’t know its contender before it took her on hehe because shes a fighter. I can’t deny I’m scared and my close friends, I’m very glad to have them just now.

Rhanna's driving lessonI’ve had 2 driving lessons so far and Anna and Andy have both took me out as well. I just can’t wait to pass my test and take my most special person in the whole wide world out and we can turn the music up really high and just drive wherever we want!

I don’t know why bad things happen to good people and my mum has great friends but some of the people who promise to be there walk away without a blink, I don’t think it’s because they’re horrible, I think it’s cause you get scared especially when you’ve lost people you care about already, no one wants to watch their friend suffer, so sometimes it’s easier to turn around, this doesn’t make for a horrible person, it just maybe means they already dealing with enough and they’ll come back when they’re ready.Every night before I shut my eyes I pray for another day tomorrow, one day at a time mum and we have gazillions of days to go hehe, love you mum all the way to the moon and back and back again xxxx xxxx xxxx xxxx

Sam and Andy at Stobo Castle

3 responses to “MSA – a reality check

  1. Heather says:

    Sounds like you guys had a ball at Stobo Castle. How wonderful for this to be arranged for you all. Rhanna, lucky girl getting a car, hope it isn’t long before you pass your test. Love to you all xxx

  2. Nadine Thrall says:

    After meeting you at Stobo (I work there, took you to the ‘dreamwater bed!’), I just had to find your blog. It was just a pleasure to meet you, such a lovely, gorgeous family and I’m so glad you had a good stay stay at Stobo. I didn’t know anything about MSA before meeting you but have looked it up since – I’m so in awe of you all. Nadine x

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: