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

Trying to stay positive.

on June 25, 2013

Sam and JojoSam:
This has been an odd week with ups and downs, obviously last Sunday night we all got a huge fright and it seems that fear is here to stay, every time I feel a bit rubbish we worry. So although we try to stay positive it’s became just became a little harder.

I did however get a giggle (after the shock) of reading Rhanna’s blog last week. We don’t read each others blogs before they go up, we just discuss what we feel like writing about and then do it on our own so that we both read the honesty in each others mind. So when I picked up the iPad there were all these emails from people all around the world, then I read Rhanna’s blog about birthday cards.Yes it was a huge shock but after getting over it I cried buckets, not out of anger but because my beautiful daughter thought about doing something wonderful for me as well hopefully spreading awareness “paying it forward” as she said, if every single person emailed a few of their friends then awareness will grow and grow! She will never stop being my baby regardless of what age she is! Proud doesn’t cover it!!!

I would love to tell you that my health has been good but I have the MRSA bug again and after many tears to the doctor he agreed to treat me at home with combination therapy rather than stick me in hospital, my biggest phobia (after spiders and moths) eeeuuggghhh!! So I haven’t really been over the door unless you count appointments! Sometimes it seems like we live in a bubble, having to tell friends to stay away if they even have a sniffle! I sleep so much that I think Andy has taking to talking to himself lol! It’s not really funny and I feel myself weaken a little more every day.

Rhanna and JojoI know we are lucky to have such great support from the Trust, family and friends. I did get to Rhanna’s school show which was amazing, the kids in the show were incredible and would honestly put a professional stage production to shame, it really was that good with tears and laughter all the way through.

I have to say to everyone a huge thank you for responding to Rhanna, she’s is so excited and so happy, she truly thought that she wouldn’t hear anything and she was very kindly sent a gift for herself from Net so thank you Net for giving us earache 🙂

I am In the process of organising an online auction to raise funds for the trust so keep an eye out on my Facebook, hopefully I can stay awake long enough to get it started!!!

We also have a amazing event in October, hopefully I can get the link added to the blog and you can see all about it, needless to say it I think it’s a great idea, in short it’s to do with beautiful vintage cars, bacon rolls and coffee but there really is more to it than that, it’s a very special couple who have been very kind to us.

Oh, I have to tell you that my mum got a puppy!! JOJO and she is adorable, cheered me up when’s became for a visit this week to introduce herself, don’t think Moll and Jack were too impressed! So as another week beckons and carers and nurses and doctors will all be visitors.

I wish everyone one of you a good week and send giant hugs to you all…especially the Wallace Clan xxx

Oh my goodness, so far I have had a great response from people asking them to send a birthday card to my mum her birthday is July 13th. She didn’t know I had done it (in case she said no hehe) but she was happy after the shock, I can only say thank you to everyone who has responded so far and please keep considering sending a card, my email is

Rhanna as a grannyI had my show at school this week and it went really well, I had to sing two solo’s and honestly I was shaking, I was playing the part of a granny and I had a fat suit, a wig with pink rollers and a waddle that could better a duck! It was so much fun, everyone on the cast and backstage were amazing and we had a great week. Mums been sleeping mostly when I have been coming in but she did come to the show, which is amazing and I’m so proud of her because it was on until 11.00pm so she sat for 3 hours, thank you mum for coming. On the night mum came so did everyone else and they were the loudest table 🙂 Hazel was on her feet at the end it was AMAZING!!

Mum has another infection and should be in hospital but she hates the thought of being alone and just hates the thought of hospital, it makes me sad because I know part of it is that she doesn’t want to leave us which is daft really mum because we would be ok.
When I was fixing her hair yesterday she just looked so fragile which is rubbish because she had been looking better and then because of the infection her stomach is swollen and she when I went through to her room she was crying because she couldn’t get her trousers up. 😦 I don’t know if you can imagine how sad I felt for her, something so silly but to mum it wasn’t so I just cuddled up with her and we decided joggy bottoms and comfy clothes are way better anyway…. Any excuse for a trip to River Island, my treat for my wonderful, incredible, awesome mum.

Has anyone ever been to Iceland? There is a school trip coming up but it costs a fortune but mum says its such an opportunity, we visit the lagoon that you can swim in and do different trips, see part of the world I would never normally have the chance too, I love you to bits mum and even though you say “where’s there a will, there’s a way” it’s still a lot.

I only have one week left till the school finishes for summer woohoo!!! I cannot wait and will be having a few sleepovers with both sets of my amazing granny and grandads and my friends and I will have a great summer! Thank you all again for helping me with my wish for mums birthday, please pass on the message to others so that we can “paste the wall with cards” as someone special to my mum said to me this week 🙂
love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

Sam and Andy
It’s 3 o’clock in the morning I’m wakened by Sam who is sound asleep “why did you drink all my irn bru?” she says, I laugh kiss her forehead and say go back to sleep, her reply “don’t you kiss me after drinking all my irn bru!!!”!!!!!! Just another day, or night as the case may be. By the way Sam hates the stuff!!!!!!

Last weekend wasn’t nice, Sam passed out as she has countless times over the years difference being this time it took her ages to come round, when she eventually did her body was limp no muscle control at all and trouble breathing, it was really scary, luckily my mum and dad were in the house at the time and were a great help.

Here’s hoping the antibiotics kick in soon and ease the pain for Sam, she doesn’t complain often, battles on, how she does it I don’t know, if there’s someone looking down on us please give her a break for a wee while. No one truly see’s or know’s how much she goes through to get through a day.

It’s hard caring for someone and trying to give them space at the same time, one of my most worrying times is when Sam goes to the bathroom, every 2 mins I’m at the door shouting “Sam, you ok?” It must drive her crazy!! Thing is I don’t have a choice, had so many accidents in there its unreal, I wonder if social work would stretch to a padded bathroom ?

Rhanna’s exams all over her school show finished which was amazing by the way wonderful talented bunch at Graeme High, it now means that Rhanna’s driving lessons are back on, why is it that someone who isn’t shy at looking into the mirror in her bedroom takes a serious aversion to one in the car??? Joking aside she’s coming on great.

I would like to thank very special friends for their continued support its quite unbelievable how much people will go out of their way to help. I’m off now to see where Sam has hid the irn bru!!!!!!!!!

Oh nearly forgot, the hoist, the bed, the mattress, the bed risers, the step ladders to get there, social work, Shona, Carina and Gregory’s girl a long story not yet concluded(!!) for another day.
Luv ya Sam xx

6 responses to “Trying to stay positive.

  1. brian smith says:

    Hi…This is the first time I have read your page, and it brings back so many memories. My brother Gary, suffered from this dreadful disease, and although it is as horrible as it can be, it seems to bring the very best outof people.

    Strange as it may be, Gary, being my older brother, and I never really were the best of mates, until he became ill. Then over the course of his illness, we became the very best of friends, and something that I will cherish forever.

    I have to say I read your page, and cried, and if you saw what type of man I am, its something I very rarely do ! the mans man and all that !!!

    From my heart, I wish you all as a family the best, ,and I hope the future becomes brighter for you all. Battle on and be strong as the family you are, and you will conquer most.

    Brian Smith

    • Hi Brian, a real man is never frightened to show his feelings so you def don’t have to worry about that, im so sorry for the loss of your brother but I’m happy you had such a great relationship with him before he died, my sister and i are like that but we haven’t made it back,yet…. Thank you so much for your honesty please,take care, love and hugs Sam x

  2. Ria ( Falkirk for Mums) says:

    Samantha, thank you for messaging me the next part of your blog, it’s nice to read about the good things in your family and the sad parts make me cry, it’s funny how when you have never met someone but feel like you know them a little just by reading about them and their family. sorry to read things are pretty crap for you all just now, I really pray things get a little better and you manage to get out and about again. What a star Rhanna is and I already have your card ready to post,think I will send it early as we go to haggerston castle on the 6th of July and wouldn’t want to be late sending it. You three seem like a great team, just a shame life is so hard on the three of you, I really hope you have plenty of strength when your birthday comes and the three of you have a lovely time. BTW your daughter is such a gem, she sent me a lovely message and at the end put ” if I can help anytime then I def will ” she’s so busy with her own life and supporting you guys but offers her help. No wonder you’s are so proud of her. Anyway get better soon Samantha and take care you guys, sending big hugs your way… from Ria ( Falkirk for Mums) xxx

    • Hi Ria thank you so much for such a lovely message, we are incredibly proud of heou underestimate yourself all the good you do, hopefully you,will get,a much needed break, thank you so,much for sending a card it’s very much appreciated as I’m sure you know, much love and huge hugs, sam (have a feeling I’m in andys acc instead of mine) take care,sweetheart xx

  3. wilma0750 says:

    Well hen down again but not out u can and will beat that bloody infection yet again with the proper help , as u say its bin up and down the show being the highlight off the week and am sooooooo pleased u managed to sit that long in that much pain u desrve a bloody medal medal,a shame the rest off your family missed it hey ho life a suppose . how nice it was that u even managed to cum through on sunday to visit with sharon it was lovely even jo jo enjoyed it lol ,luv u infinity . rhanna u can fairly take the wind fae ma sails with all that u do for ur mum soooo selfless we are all soooooooooo proud off you luv u zillions xxxxxxx. andy where the hell would we be without you god only knows am soooooo pleased u an sam got together ur a true gentleman even tho ur a bit daft luv u anyway pal xxxx

  4. Pam Bower says:

    Hey guys, Love the blog as always.. but can you please translate for me.. what the heck is “irn bru” ? … 🙂

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