myfamilyandmsa

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

Stepping into 2013 with MSA

on January 1, 2013

Rhanna:
Oh my goodness the blog has had over 10,000 hits! That’s amazing and overwhelming. Christmas has been so special for all us this year, mum has had a lovely time and everyone has been so kind, we are nearly at the £5000 mark only about £100 short, I hope we can do it!

Mum isn’t writing for the blog this week, she’s really tired and struggling to keep being jolly, her hands are getting so much more worse and she is leaning more to one side, but she won’t let it get on top of her, I think she just needs a rest, Christmas is very very tiring!xmas day

The article in the Daily Mail was really good and we had such positive responses from complete strangers, it has meant so much to my family so thank you to everyone who has taking the time to get in touch. It’s funny how at Christmas it’s a time for and family and in someways you can’t be further apart, mums been really hurt this year and she isn’t to good at coping at situations like that. Jenny who wrote the article in the mail is an a wonderful woman and has kept in touch with mum, Jenny if you read this, hope your arm getting better.

Now we are heading into 2013, in a way it’s a relief to be leaving to 2012 behind us but stepping into 2013 is so frightening it hurts like a pain I can’t describe. I know mum feels the same. We cuddled up last night and watched a film, then today we watched lilo and stitch, I feel like we are sliding down a mountain and we need mountain climbing boots on.

March is MSA awareness month so I know we are doing something, first though we get mum back on her feet, well not on her feet but back in the driving seat and surround her with family and friends. I wish to our friends new and old, a special and incredible a very happy new year and I hope 2013 brings them peace and happiness and I wish for hope, not just for myself but for everyone suffering or watching someone suffering from MSA…
Hope and love is what we have in abundance. Love you to the moon and back again mum.

Andy, Sam and Rhanna

Andy:
This time last year I had never heard of MSA.

Now I know that people diagnosed with MSA can expect to live on average 5-7 years, we know only to well that the only thing that counts is the moment you live in, the memories you make, the love you share and the friends that care. Since March, Sam and I have laughed, cried and tried to make the most of every moment.

This time last year, Sam could walk a little, eat everyday food like everyone else, speak normally (unless wine was involved!), had the use of both her hands, not be attached to a catheter and did not have a terminal illness hanging over her. We were hoping someone somewhere would get to the bottom of her illness and get her on the road to recovery.

This time last year we had never experienced so much warmth and love from complete strangers, messages of goodwill , words of encouragement, and support from so many.

This time this year (does that make any sense?) I’ve been looking forward to Christmas with my amazing gorgeous wife, watching her face light up when she opens her presents, pulls the crackers, sits back and enjoys the love and warmth of her family.
xmas Rhanna and andy
I’m looking forward to Rhanna having a great Christmas, she’s an absolute star, we know how much she hurts and how hard she tries to cover it, I can see it in her eyes sometimes when she thinks no one is watching, I love her to bits.

This time next year no one knows, but I’m sure on the trip to Christmas 2013 we will have laughs a plenty, and I will love Sam even more.

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11 responses to “Stepping into 2013 with MSA

  1. Mary Burke says:

    Am so touched by this blog, each time I read I am in tears, not of pity because I know you all wouldn’t want that, but just amazed how positive you are and I am touched by the love you have one for another.

  2. mjerm@tiscali.co.uk says:

    Sending love to you all for 2013.

    >

  3. wilma0750 says:

    Rhanna you are most definatly 100% your mums daughter your hearts as big as youself you also deserve the very best that life has to offer you and i just wish with all my heart that i could fix things for the three off you , you are one very special young lady and im so proud that hour my grandaughter a star in the making love the three off you infitity xxxx

  4. Nicola says:

    Xxxxxxxxxx

  5. Carole Aitken says:

    We feel so blessed that you Sam, darling Andy and beautiful Rhanna “crossed our path”!! If it wasn’t for this vile disease we would never have met you, we feel honoured to be sharing your journey and I know we will all meet one day xxcc

  6. Rachel bache says:

    Hi 🙂 ive been following your blog and read your story in the daily mail. Rhanna I’m in the same position as you, my mum has MSA too and was diagnosed in March, and I’ve also been fundraising. Feel free to add me on Facebook or send me an email, it would be great to speak to someone in the same position as me. Sending my love to you and your family xxxx
    Rachel_Bache@msn.com xxxxxx

  7. terry connolly says:

    so sad for you all yet you managed to enjoy some lovely moments……………..someone asked me recently what is happiness……………well i feel its tiny moments of beauty and joy…….seeing the first snow-drop……..seeing a new baby smile,,,,,,,,,,,,,,a walk with a friend on the beach……time shared watching dvd with family as you all did over Christmas ………..special moments are tiny jewels to help us through the sad times ( believe me i know about sad times) i often think of you all and pray for you.God Bless many blessings for you all.

  8. kim says:

    i too know exactly what u are going through. my mum was diagnosed with msa last june and like you things are moving so fast its hard to comprehand. I often think of all the memories i have and cant help feel angry at times that this is happening but like u we are trying to make the best of what we have. Its nice knowing im not alone x

  9. Sending Love and Prayers your way.

  10. Rhanna, you are so right, MSA is like sliding down a mountain but like all mountains they are majestic like your love and support for your mom. Keep on cuddling, actions speak louder than words.

    Andy, we never know about next year but we know about the yesterdays and the now. Keep bringing the smiles and happiness to Sam!

  11. Suzanne Hathaway says:

    Hi Rhanna and Andy, I think of you all every day, I lost my dad in August 2012 to this vile, distressing disease. I cant offer advice or any words of wisdom that may comfort, all I can say is that Sam is blessed to have such a lovely family around her. Keep strong, as Brenda says above, actions speak louder than words. Sending my love and prayers to you all, Suzanne x

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