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

Birthdays and the 4th of July.

on July 7, 2013

Sam as the statue of liberty
Tues 2nd July, my mums birthday, so already a special day for us but at around 10am Rhanna came into my room crying and behaving like a lunatic…why? Because she went for an audition for BBC television series called Shetland with Douglas Hensall and OH MY GOD she got the part!
Rhanna, Hazel and PoppySo filming starts Friday  and Andy and Rhanna are to do a mega early to drive through…… I am unbelievably proud of her, indescribably proud of her actually, she has so much to deal with in her life and this is just what she needed! A total confidence boost for her. There is no doubt in my mind that this is just the start for Rhanna and her friends Poppy and Hazel were here so she had someone to jump about mental with and I promise, those two are mental!!

I have to tell you about the auction, it raised £140! So I’m going to keep doing it hopefully our very lovely, amazing, sounds like jelly, but doesn’t like to be named beautiful blog lady will put the link on for me again this week. You can view the auction Anna and Rhanna dying hairhere.
I don’t know how long I will manage with it but for as long as I can, I will and thank you to Donald for his visit and American gift (photos are funny) and thank you to Anna as always my text pest and to Nicola for listening!

As for me, well I just continue to sleep, we were very lucky this week, as I wasn’t feeling great (that’s not lucky bit) the lucky bit was that Katie Rigg came to us this week (if the mountain won’t come to Mohammed) anyway she was up for the support group and took a chance on us being home. I’m very grateful to her for doing so, she really is wonderful lady who works so incredibly hard and still manages to look wonderful!

It’s so good to be able to sit and say how things really are for you and also she was reassuring, talking about my slurry speech and so on, then of course the longer she’s in the more comfortable you become about asking the harder questions and out comes the tears, the snot and the hankies!

Being able to speak to an MSA nurse is priceless, you cannot put the value on how very important they are and the thought that there are only two MSA specialist nurses covering the UK is unbelievable, even more unbelievable is that they aren’t funded by the NHS, isn’t that incredibly disgusting!

There are over 121 different services from hostels to rehab to accessing support and specialist services in Scotland for people with drug and alcohol addictions, I myself have actually worked in that area before becoming ill and although I know these services are desperately needed, when you become ill with a problem that wasn’t in anyway your fault it’s very hard to understand the lack of support so it’s thank god for charities like the MSA Trust and our two very special nurses!

Katie and I spoke about a subject that always seems a bit taboo…, Poop yep the very subject no one ever wants to mention to their doctor but whether it running from you or just won’t budge you need to see your GP and keep going back, if at first it does succeed there will be something else, having MSA is enough to contend with without having to worry about Poop (apparently none of my friends poo and the queen has someone come in and wipe her posterior) now that’s POOP! Please don’t suffer if it is problem and if you are embarrassed write it down…

The GPs themselves will themselves have had the same issue! Someone very, very close to me, I won’t mention her name but she knows who is once told me that whilst on holiday with her husband she was very bunged up so her husband suggested a kebab…Well lets just say she left the toilet a few pounds lighter and a zillion times happier! Obviously we can’t do kebabs unless they are liquidised (MINGING) so at present am stuck….Stuck hehe with lactolose or senna or horrid drinks…!

I wish you all a good week, my aim this week is to try and stay for at least two hours! It’s my sisters birthday 7th July, happy birthday baby sister, love you always xxxx

Sooooooo guess what everyone, I got a relatively main part in a series here and have started filming!!! I promise to let you all know when it’s coming on but fingers crossed this is just the beginning.

It’s been said my mum is Granny’s favourite and I want to say something, she doesn’t have favourites, she’s the most awesome granny anyone could ask for, I love staying over and having our wee yaps in bed and I know she loves mum, Auntie Becky and Auntie Lisa all the same and she’s right when she says, she can’t do right for doing wrong.

5__#$!@%!#__imageMy mum needs her mum just now, more than anyone knows and I speak to mum all the time about her Granny. Mum tells me all the stuff about herself, she thinks she did wrong, who she hurt and how horrible she was, I can’t ever remember mum being like that so how then could she be favourite and she definitely wasn’t in 2001? She got her heart broken then.

Not just then others time too. What will I do when mum dies? It’s questions I know goes around in my mums mind. She misses Auntie Lisa so much and she wanted her to get roller skates so they could be Olympic champions, mum would be in her chair, I know you say there’s always more to it, but sisters can have relationships without husbands always there, mum is going to die Auntie Lisa and you and her will never break anymore records and be champions. We aren’t meant to be talking about this stuff in this week’s blogs but I suppose it shows illness doesn’t stop fall outs. It’s meant to be about Granny’s birthday and my job but I’m the same as my Granny, if it needs saying, then say it!

Mum’s birthday is next week and we are going on a barge! So exciting and I know she has Carol and Torsten coming both of whom have been touched by MSA in different ways. I know she wanted Paul, etc but I know they will all be wishing her a happy birthday, there’s still time to send a birthday card to her I can give you the details if you email me

She also has the auction going on raising money for the trust. You can see it here. You need to click on to photo’s, the albums, then charity auction for MSA to see them.

I will be able to tell you lots more about my filming next week once I’ve been in a couple of times.

wilma My Granny had a fab birthday on the 2nd (should have mentioned this first oops) anyway she was 63 so Andy put a 50 candle on it then 13 candles hehe! She wanted photographs from mum, so mum got that sorted and we adopted a meerkat called Wilma, which is my Granny’s name hehe, so she ended up with two meerkats, Dvd’s and a microwave hehe! Some combination and I’m not sure what her other gifts were but she said her favourite was my phone call telling her I got the part!

Happy birthday Auntie Lisa, love you mum, all the way to the moon and back again xxxx xxxx xxxx xxxx

Andy in the statue of liberty hatmolly

2 responses to “Birthdays and the 4th of July.

  1. wilma0750 says:

    So sumphy what a grt day my birthday was loved every minute off it the pressies extra special specially the fone call will take that to my grave awesome . sooooo pleased the auction went well the bank off wilma just about burst noo lol ,and yesterday was nother nice day at urs glad u liked the fudge maybe a should make u sum senna fudge lol yuk , that needs seeing to dont forget .now this bit im not sure about but here goes oor lisa no sure how to fix things cos its went on too long u bleed i bleed she bleeds so anyway god loves a trier he must b bloody sick o me lol but will do
    My best for uz luv u infinity mind an c the doc xxxxxxx
    Rhanna what great idea that was re the birthday cards for ur mum awesome , shes got loads so far hope she gets a lot .ore .an ur mums right i dont have a favourite each off them are special in there own way but just sometimes one needs a bit more attention more than the other two , your hearts in the right place beannie and for that u will always shine more than anyone else that i know , re your auntie lisa it will sort its self out dont worry bt it luv u zillions xxxxxx

    my best for uz luv u infinity remember the doctor an get it seen to xxxxx rhanna what a grt ideal that wazs re your mums birthday and the cards amazing

  2. Dear Samantha, Andy & Rhanna, words always fail us to know what to say to you only that you continue to keep us going with your wonderful grace and spirit. I pray with all my heart Samantha that whatever has happened with your sister can be sorted out before it is too late. Do not know what happened and don’t want to know but it is NEVER too late and I pray she takes action because if she doesn’t she will regret it for the rest of her life. Death is final, that moment when I knew my mum had passed and then when we got the phone call from the hospital to say my dad had passed you know immediately that is it, the end. Whatever you wanted to do, whatever you wanted to say to that person the chance has gone. You can then only speak to them in your heart and your prayers. In the cold light of day you are sisters and nothing else matters. I so wish I had a sister to share with and care with but I haven’t. Whoever said what and who did what should be forgotten. I hope I haven’t spoken out of turn but it breaks my heart that you Samantha and your family are hurting so much from this, but at the end of the day you know in your heart that you love your sister and always will. Have a good week sweetheart and Rhanna CONGRATULATIONS on your AMAZING FANTASTIC news. What a wonderful pressie for your Gran, the best present I’m sure she will ever have. Hope the sun shines for your birthday Samantha, our brightest star that certainly shines for the benefit of others. Love always, C & G xxxxxxxxxxxxxxxxxxxxxxxx

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