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

Gripped by MSA

on January 15, 2013

Sam and RhannaSam:
Saturday 04.18am.
Can’t sleep…sometimes It feels like im being swamped by the dark, far too silent. Like most sufferers of MSA I have problems sleeping so maybe I’m wallowing a little. But as I listen to the sound of my amazing husband sleeping, I feel incredibly sad because I don’t want to leave him, I want us to grow old together and laugh our way through!

Sam and AndyI can’t imagine Andy or Rhanna without me, not because I think I’m indispensable but in the same way I can’t imagine me without them. Andy and I got married in 2006 exactly 10 weeks after our first kiss… I loved him from the first moment and I love him more today. Our families met each other at our wedding and many people thought we wouldn’t last.

Move forward to 2013 and I swear to you that he is part of me, Rhanna as a babyAndy and Rhanna are my life source and I don’t want to be robbed of a second with them. Rhanna was born in 1996 at 25 weeks weighing a tiny 1lb 11 ounces, she fought so hard to be here, I will fight just as hard for as long as I can because she is my inspiration.

MSA takes so much away from you, that for me is my biggest obstacle, leaving them, my mum and Ali, Andy’s parents my sisters and the rest of my family and friends.. I don’t want to! Finding friends again after 16 years … I want at least another 16 to catch up! I’m going to stop now and pick back up on the blog tomorrow, in a better frame of mind…..

The good, the bad and the questions.
Sam's presents from CaroleI received a parcel through the post from an amazing couple I have ‘cyber’ met through the support forums, Geoff & Carole Aitken. Geoff suffers from MSA and Carole is for sure his angel and fast becoming a special person in our lives. The parcel contained things that I know had very close personal value to them and they had bought in Lourdes last year, these items will be treasured forever.
Also two books, one of which I’m halfway through reading and although it has caused me much turmoil it has also brought comfort as well, “Proof of Heaven” it’s a neurosurgeon journey after he becomes critically ill and his experience of NDE, near death experience. Carole sent this parcel to bring us comfort and she has, more than she will ever know, a complete stranger with her own heartache and still she’s capable of giving to others, pretty remarkable lady! You would think that would be incredible enough but they also sent a donation for our just giving page, despite their own situation.

I’ve had the pleasure of seeing Gordon and Edna, my mum and Ali, Lisa and AnnaMolly the dog and of course I have my Andy and my Rhanna, my beautiful dog molly and… this is just for Andy’s sake the fat cat Jack! All in all pretty good!

My hands are broken. I don’t mean in the sense that the bones are broken but with the best will in the world I can’t get them to do what I want, can’t pick up things like my chocolate buttons! Or turn the pages of a book, Jesus its hard to pull the toilet roll! One hand is worse than the other, occasionally the feelings go all together and I get scared it won’t come back, they do still move and I can hold a cup and pet my animals, I can stroke Rhanna’s hair and cuddle my husband, for that I’m thankful.

I have no idea for how much longer but I do know that MSA got a bit of a grip of me just now and I could do with a little break! Can’t help thinking this is all a bit depressing this week and I’m sorry, there is as I said above some good, this is my bad

So many questions in my mind, is there a Heaven, is there a Hell, is there a light and someone waiting for you? Lots of things have made me think, Carole, the beautiful comments and support from others, the books I’ve read or reading. My Granny died when I was ten years old and a bit of my heart has always been broken, we had an special bond and I hope that’s she there waiting for me, guiding me the right way.

My blog is longer this week and I hope I haven’t caused upset, offence or complete boredom to anyone, we said when we started this, we would always write what/how we felt or feel. MSA isn’t a happy disease but in lots of other ways I’m blessed so with that I send my hugs.

It’s been a funny time so far this year, not funny as in haha but there’s been so many ups and downs already, it’s a little like a roller coaster although some days it’s like a waltzer, your head spinning so much it makes you feel sick.

My friends have been awesome and text me everyday to make sure everything is ok.

Sometimes I feel so guilty, I got my new hair extensions which Rhanna with her new hair extensionsI love and I’m so happy with them, then I remember mum and feel horrible for being happy, I’ve got a callback for the school show, again thats awesome but again I feel guilty. Mum doesn’t want me to be like that and she says my life is just beginning, never to feel guilty for being happy because when she sees me happy she says that makes her well. She says she sees me flourish and that makes her proud, her biggest achievement.

To me my mum is my inspiration, she will take on the world and fight it, she will find a smile when we can’t and makes you laugh when you don’t want to. She is the strongest person I know and what she doesn’t have in size, she has in spirit.

We have spoke about her hands and either Andy and I give her, her medication. It felt really odd at the start feeding mum her tablets but now we just do it, no thought or doubt, it’s just one of those things. She’s is getting herself back into fundraising mode but because she tires easily and it’s hard.

Today we were talking about when I leave school, it’s my dream to be an actress, my dream part in Waterloo road, how awesome would that be? Mum supports me all the way but I need a back up plan too, I just can’t think what because my heart is in acting, onstage I can be anybody I want, escape to another character and feel different for a little while.

Sometimes I just want to stand in a huge field and shout STOP please, please just stop and don’t take my mum away, she’s my best friend, she’s my mum. If her hands stop all together she’s still my mum. Andy and I watch her watching Miranda on t.v and oh my goodness she laughs so much it’s amazing, I think it’s series 3 on t.v so we def need to get series 1 and 2 because she never laughs as hard and it’s impossible for me to describe how that makes me feel.

This is what she said to me this morning … “Imagine, Dream, Vision, Inspire and never stop believing” That’s amazing, that’s my mum. Love you mum all the the moon and back again xxxx xxxx xxxx xxxx

13 responses to “Gripped by MSA

  1. wilma0750 says:

    Samantha uve got to beleive that there is a heaven am certain there is , i know how hard the last week or so has been for uz but u got to beleive the strength uve got its awesome !!! the sun cum out tomorrow , i dont think that i could be any prouder off you an ur wee family sometimes feel ma heart gonna burst wi pride . weve got great times ahead off us hen just beleive , luv u infitity . rhanna you are just the best think ever thats came into our lives awesome caring funny a heart thats bigger than ur wee self luv u zillions xxxxxxxx

  2. We are in awe of your strength as always Miss Samantha!!! YES you must believe there is a heaven, how many times do I have to tell you and your Gran will be waiting for you?!!!!!!!!!!!! I say to Geoff that if he leaves me suddenly he must get in touch SOMEHOW and send me messages i.e. flickering lights, coincidences, strange happenings!!! When we first learned of Geoffs diagnosis Sam all I used to say was he is my WHOLE life and without him I am nothing. I used to joke (!) that when he leaves I am booking myself into Dignitas the swiss euthanasia clinic to go and join him!! Of course our boys were appalled and I can honestly say that meeting you, Andy and Rhanna has changed my mind. Things do happen for a reason and your strength and determination has so brought Geoff and me such acceptance of OUR situation. I don’t want him to go but I am slowly accepting I will be on my own sooner rather than later but because of you I now have a purpose to go on. When you and my Geoff can fight so hard against this pig of a disease it truly inspires me to go on fighting on your behalf. I will leave it there but just to say THANKYOU to the amazing Crawford 3, you will never realise how much you mean to us xxxxxx

  3. Jayne Watson says:

    There is definitely a heaven as my mum is up there and I know I will see her there. You are all such an inspiration, I just hope that if anything happened to me or my family, I could be as strong as you. It makes me realize you have to live each moment and enjoy it.
    Much love, Jaynexxxx

  4. says:

    Hi Sam

    My name is Toni Ledbetter and I also am a vicitm of MSA, We live in Texarkana Arkansas with myhusband and my four precious dogs whom are like my children. 5 children and 5 grand babies.

    I have been folling your blog and have read every single word and feel your pain and your hurt.
    We went to so many doctors, so many test, and always the same can not find nothing wrong. In May of 2012 we went to the Mayo Clinic in Jacksonville Flordia and this is when I was dignosed.

    Since this time I have had so many changes in my life, and slowly losing my independence. All of our children live so far away which makes it even more difficult and felt so all alone until I found the MSA support family. I sit and think this is not fair, why me? so frustrated I can not do the things I used to, feeling trapped in my own body, so many sleepless nights, so many falls, head injuries and body, the pain, 2 surgeries to help my bladder work some, my speach, but them I think look at all the things I still have and thank God for every day he is giving me but still wanting yesterday. It seems there is no ryme or reasons for this diease.

    Please know my thought and Prayers are with you every day as well as all the other victims to this horrible diease. There is so much love and support, and there is a God watching over you.
    Stay strong and determined and never give up. I understand everyday is a struggle and we never know what tomorrow will bring but know there is also someone waitng for you on the other side.

    Please know reading your blog I feel the love of your family and you inspire me. I know my future is grim but I take one day at a time.

    I will continue to read your blog and pray for you dailey, sending Love and Huggs

    Toni Ledbetter

  5. Paula Davis says:

    Good morning ! My name is Paula Davis and my husband Jim has MSA. He has had it for 8 years. I had to reply about your comment on is there a Heaven!!! Our God Sacrificed His own Son so that we who belive in Him will have everlasting Life. We have all questioned this same thing. Yes it’s harder when it is staring usin the face. We have had the Lord in our lives forever and I don’t know what I would do through all of these hard days without His strength. I am thrilled to know that when I go see meet my Savior when I leave this earth. Always keep your eyes upon Him. He will guide you through it. I pray continually! Your daughter is precious. I am my husbands caregiver and its hard when your the spouse also. I have a daughter your age and i am so sorry this hit you so young. You are an inspiration to many! We will be praying for you and all people! Our Savior knows you by name and He’s waiting to wrap His arms around you and all of us when we finally mmet Him.

    • Heather says:

      Amen Paula! You are right where we are in our thinking. My husband (57) has MSA and has been diagnosed 6 years and I am his carer as well as holding down a part time job. Without God in our lives I’m mot sure we could face each day.

  6. Nicola says:

    Rhanna, it’s hard but don’t let guilt rob you of what you have right now, seeing ur child happy is one if the main things a parent lives for, seeing them knowing their sad pulls our hearts out, I know ur happiness is of no1 importance to ur mum, enjoy life and live it honey. Xxxx

  7. Hayley says:

    I found your blog through my Facebook and read it and feel all of what you feel (as the daughter). I have seen my father, the CEO of a company, an amazing dad and supporter throughout my life be slowly taken away from me. I feel those same feelings of guilt, when I am able to run and workout and travel, but then quickly remember that he would never want me to feel that way. He is so proud of me and I remember when he couldn’t make it to my wedding, but the blessing of technology we were able to skype the whole thing so he truly was there with me. He has always been there for me, and even though he is confined to his wheelchair and struggles to speak, I know his mind is strong in there and he is still the same dad I have always had. I am so thankful for this blog and for your writing EXACTLY how you feel, it helps those of us relate on such a deep level. God Bless You.

  8. I admire your strength Sam and your daughters too. Blessings to all three of you. Rhanna, my mother died of cancer when I was 30, and I thank God for the years I had with her. As sick as my mom was she was still a mom. She wanted to put a smile on my face when I was sad, and she loved to hear about what was going on in my life. So Rhanna when your out having fun just remember that your Mom will love to hear it. Cause you are a part of her life.

  9. Lyndsey says:

    I have been following you blog since the start, my mum had MSA and passed away in December 2011, aged 51. The next day I gave birth to my daughter, this would have been her 5th grandchild. There has to be a heaven because when I feel pregnant for the 4th time it was a big shock but I now beleive my daughter was sent to us for a very special reason Love & best wishes to you all x

  10. Anne Lewis says:

    I have followed your blog and think of you and your family daily. My wonderful husband passed away May 2012, and I think of him daily also. We were married 42 years and life without him is truly different. Bless him, he fought so hard, and I HATE this disease, but hate more that our medical community cannot get the proper treatment. There needs to be more research, and I have been working on media coverage ! Not even Nurses I have met know this disease. Bless you and your family. I will continue to follow your blog.

  11. Jan Collinge Howarth says:

    My Mum Maureen lost her fight with MSA January Sat 12th, as a daughter, carer and her best friend I truly belive all good people go to heaven, espaecailly thoses that are good and have fought such a hard fight with conditions such as MSA. I said Yesturday in my mothers eulogy, if she had not of been diagnosed with MSA we would never of been so close and forged such a bond as we did. MSA is a rotten condition one you can only hit head on. My thoughts, love and support are with you all and remember are mothers are born strong and they will and did fight to the end, they fight for us the children that’s what mothers do, life I’d for living enjoy every min and store all the wonderful memories x

  12. I am always humbled by the comments we receive….. Thank you to everyone who takes the time to read our journey… With love and hugs xxx

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