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

MSA – sometimes it’s hard to smile

Sam, Rhanna and Andy
Monday was Andy’s birthday and because he was 50 I had hired him a m2 jaguar which was also 50! Andy and jaguarAlec and Tanya at Caledonain cars were lovely and couldn’t be more helpful so a huge thank you to them, if you are looking for wonderful gift seriously think about them.
Andy is 50!To Gordon (thank you) for being my secret agent! It was beautiful and after a quick stop at his parents to pick a food hamper (thank you Edna) we headed out for a day. Although we have done lots of lovely things together it has felt a bit like we hadn’t done anything just the both of us, so we had a lovely time just cuddling up, eating lunch and blethering about nothing important!

I have been quite poorly and all too aware that I’m sleeping lots more and trying really hard to focus. That was the start of the week…
Yesterday I got a phone call from Rhanna’s school, she had written a poem that had alerted them that something was obviously very wrong with Rhanna. I asked Rhanna if I can write bits of it to you in the blog and she has agreed.

From Rhanna …the girl with the smile

The girl in the corridor who seems to have not a care
The girl with the smile is no longer there
Remember the things you said to her, remember what you’ve done
Remember how you laughed and said it was just a bit of fun
And those who didn’t want to be involved just turned their backs around
While the girl who always had the smile, her world was crashing down.

She told people she was miserable, but no one seemed to hear
It was like she was invisible, even her friend made her feel like she wants to disappear
To those who didn’t listen, how do you feel now
Is you mind filled up with questions like what if and why and how
She does have people supporting her and she knows how much they care
But now because of others she feels they’d benefit if she just wasn’t there
She feels like she is drowning and it gets worse with each defeat
Because whenever she feel happiness, it’s always bittersweet

I wonder if in years to come, you will just forget
That girl you let down and hurt, she hopes you’re riddled with regret
Perhaps now that it’s done with, you’ll put it all to bed
Will you find it easy to forget that girl with the smile is…Dead.

Rhanna smilingAs I wrote this, copied this from a piece of paper I am utterly devastated, crying so hard and so sad I never realised just how bad things were for Rhanna although I know she’s lost friends she also made new news ones, girls that come down to the house and I hear laughter and typical teenage nonsense.

Rhanna and friendsShe’s only 17 and yes some 17 year olds are very mature but not Rhanna. She’s very mature when it comes to all things medical but not streetwise if that makes sense. I want to wrap her up with all my love and swear to god that its going to be ok, who wants to see their little girl break their heart? What kind of people walk away so easily from her?

rhanna with friendsThere are other parts in Rhanna’s poem that I haven’t put in, I couldn’t type the words, I want my baby girl to be smiling all the time, I want to protect her from pain I want to see her laugh till she cries and OMG I can’t wait till the exams are over. Rhanna’s teacher, who I spoke with yesterday is really lovely and she knows Rhanna very well, Rhanna knows to go to her if she needs too.

Rhanna, herself, well only she can begin to believe in herself the way we believe In her. If she could see how beautiful she is, how lucky people are to have her in their lives, how privileged they are to have her as a friend.

Rhanna, you are everything to me sweetheart, there is nothing more important to me than you, you are the kindest, most honest, beautifully amazing young lady with your life in front of you… I want you to grab it with both hands and shout out YES YES YES I CAN BE WHATEVER I WANT TO BE, maybe do it in your bedroom so no one actually thinks you’re mad hehe!!!!

You are my little heroine and oh my god I love you so much all the way to the moon and back again.  xxxx xxxx xxxx xxxx


MSA – a reality check

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


Multiple System Atrophy -back to where we were

Sam, Rhanna and Andy
I didn’t think I had much to write for the blog this week, things had been quiet and really if I’m honest I’ve slept most of the time away and unless its been written down, it’s been forgotten about! I even texted Rhanna to ask if she was ok at school and was she was actually at a sleepover!! Made Rhanna laugh!

Then yesterday I had an appointment at neurology. Neither Andy or I knew why but you know what’s its like, you never question the reasons. When I went into the appointment the Doctor ran through all the normal questions, my symptoms, when they started ? At this point he hadn’t opened my medical records, I said to him about my MSA and he said “I don’t think it is MSA” as I sat there opened mouthed and I said what we has judging this on, his reply to me was firstly my young age and secondly the pain, apparently pain is unusual in MSA? He asked if I would repeat all the tests, definitely not I said and was he even aware how many doctors I had seen who told me yes sadly it was MSA, not to mention the fact my family, my 16 year old daughter was told her mum was going to die.
Anyway when he opened my holy bible of a medical records, clearly I had seen a number of doctors and this one had just made the largest error, he gave me back my life for a minute, maybe two, maybe less but regardless for then I didn’t have MSA, I cannot describe the utter pain and devastation he caused me. Imagine after been told your going to die, then your not, then oh wait yes you are. As I type this I’m crying so hard, not because I have MSA but because for that small moment in time I thought I didn’t. MSA is so incredibly hard to live with because you never know when your symptoms will worsen/improve, how you are going to feel in the morning and the pain your family go through. It felt like March last year all over maybe worse.
After speaking with the nurses at the hospital they helped me more than I can tell you, and I was reassured I wouldn’t have to ever see that doctor again. The nurses helped me calm down and then we found out I’d been put in as a new referral!!!! He never even knew me, my history or bothered to look. When we left the hospital I phoned my GP to change my appointment with him as I didn’t want to wait, the receptionist changed my appointment.

Thursday morning arrives, 09.03 the telephones rings and on the end of the phone was the hospital, apologising profusely, couldn’t offer any reasonable explanation and would I like to go into to speak to my own doctor…..erm no thank you, I was mentally, emotionally exhausted. The nurses came out to see me and change my dressing etc and they couldn’t believe it, my normal nurse was furious and said I could choose to work with the palliative team, so that’s where I said yes, I know this was a long story and apologise to you all.

waterloo road

On a much much happier note my baby is 17 on Sunday (not such a baby) and she has been working as an extra on her favourite show Waterloo road. I’m very proud of her commitment, she has to be in Greenock every morning for 07.00 which means leaving here around 05.45.
sam and torsten

On Thursday we had the opportunity to meet the most incredible man who very sadly lost his beautiful wife Aileen in 2010 due to MSA, immediately he put us at ease and honestly I could have stayed there very much longer, Torsten I know you will read this and I would like you to know that I think you are amazing, I think that Aileen is so very beautiful and I know she’s still with you. I would very much like to join you onetime with you and your irn-bru, your roll and paper and come and visit Aileen with you. Thank you so much for yesterday, you are definately one of life’s gentlemen.

So as we are back to where we were and we continue to live with MSA, we can’t allow it to overwhelm us and my thanks to Katie Rigg from the Trust for her unwavering support. I am going to look forward to my daughters weekend and try hard not to think about what that man did to me and the heartache he caused.
Happy birthday cookie, love you forever!
And also happy 21st to Rachel may your future be filled with nothing but sunshine xxx

After watching my mum this week after hospital I wasn’t sure I wanted to write for the blog, I was so scared for her, scared she was going to give up and not fight anymore, when I saw her after that appointment she looked so small and so fragile, honestly I hope that doctor who managed to upset my mum that much, I hope he suffers many sleepless nights. Anyway mum said we shouldn’t allow that man to stop us from maybe helping someone else, but now I wonder if the blog does help anyone or are we writing because we can’t stop? Everything that has happened has brought MSA straight back into our faces and now we have to try and pick up the pieces. It’s sometimes just a little too hard though.

rhanna blond wigMy week has been awesome, I’ve been working on Waterloo road, just as an extra but it’s still AMAZING! I also got the chance to spend sometime with the cutest cousins in the world, Keir and  Morvern, we all stayed at our granny and grandad’s so it felt we were spoilt 🙂 I also stayed with my granny and grandad (mum’s mum and dad) I also love staying there too and my granny drove me through and picked me up from work, I like that time just the two of us 🙂

music group rhanna and samMy friends and I also went for this amazing singing thing where we got to dress up and make a CD hehe it was so much fun, Poppy, Hazel, Jodi and Kirsten the forget me nots hehehehehe thank you mum and Andy and granny, it was totally amazing and we will all have our c.d as memories forever ❤

Sometimes when I write the blog I think and feel guilty because it looks like I’m having so much fun and I am but in the background MSA is always there and I’m scared every day is another day closer to losing my mum, it makes me feel selfish, my Mum said I shouldn’t feel like that and that of course for me every day should be a good one but it’s not because what happens the day that my mum isn’t there anymore on her chair?
So even though I know I shouldn’t feel guilty, sometimes I do but I know mum wants me to live like nothing is wrong so that’s what we try to do.
Love you mum all,the way to the moon and back again xxxx xxxx xxxx xxxx
andy sax