myfamilyandmsa

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

A bumpy start to 2013

on January 8, 2013

sam and stitch cropped

Sam:
2013 hasn’t quite started the way the we thought, I’ve been struck by constant UTI’s and infections in my wound from the supra pubic… So much for an easier life!! I don’t know if its connected or not but I have found myself sleeping more and more although kept awake at night by constant thoughts of what if’s, the constant pain in my body and well…lets just say night time isn’t my best time!!

We had a lovely Christmas and at new year we had a quiet but lovely time. I suppose if anything, we have been struck by how suddenly new symptoms appear, literally overnight my hands just won’t work, it’s like even though my brain is screaming at them they won’t do what I say, I can’t pick up my medication or a pen, things like that so although my hands are in very attractive fetching splints lol, so far no improvement!
Although its obviously a very physical problem it has affected me more mentally really, though I’m getting there slowly but surely. I think we have all been a little shaken about the recent changes but we will just take it as it comes, day by day! Thank goodness for the support from family and friends, never have we needed them more.

Very amusing Facebook highlight I have to share, I received a friend request from Olga Korbut, I accepted the request thinking she was obviously connected with MSA, anyway a while later Andy says to me “Oh my god your friends with Olga Korbut” i was like “yes?” Obviously Andy gave me that look that totally said “are you feckin kidding, do you know who she is” so with total disgust he informed me I was really lucky, she is an Olympic heroine, one of the worlds best gymnasts lol, all of a sudden the 10 year age difference became quite apparent hehehe, needless to say Andy now has Olga on his Facebook hehehe!!!  I can now honestly say I feel privileged by the request!

On a really positive amazing note on Sunday my mum and Ali came through with a very special person…Sharon, my friend from before high school, the one who helped me laugh my way through teenage years and took the blame for loads of our, ermmm, bad behaviour lol. I haven’t seen her for 16 years!!!!!
Although it felt like only yesterday…how amazing that even after all this time, there is still a special bond! We definately won’t be waiting another 16 years, lol! Giving my current situation that would be bit daft! Anyway it turned into a lovely day with all of us together and Anna came over for our dancing on ice night, her sense of geordie humour can’t fail to make you smile, she is my bright light if not slightly mad when placed in charge of a wheelchair etc hehe!

The Daily Mail article was fantastic and helped to raise much needed awareness, by the end of 2013 I hope we have managed to spread awareness and make people much more aware.

So it’s been a very up and down bumpy start to the year, we have four appointments this month with a variety of specialists so who knows what will happen next but with Andy, Rhanna and everyone else around me I know I won’t be fighting this alone, that makes me stronger and more determined to keep facing forwards. Hugs to everyone!
P.S I got my very own stitch!! “As Elvis himself might put it, you can’t help falling in love with lilo & stitch”

Rhanna:
Thank you to everyone who have really kindly take time out to read our blog, you really do help us and its so nice for mum to be contacted by so many people who are in similar circumstances to us or just want to help.

Mum has been quite poorly since new year and sleeping so much, in fact she falls asleep mid conversation so you have to be quick! She also says things that make no sense but are really funny, she often thinks things have happened that haven’t or starts talking about something that is nothing in relation to what we are doing. Even as I’m reading this back it hard to understand and hard to describe?

It’s been really hard for us all because mum’s hands aren’t working properly anymore and she is finding it really hard to come to terms with that but she pretends it’s all fine. We’ve spent some really nice time together cuddling up watching telly or just yapping which has been really awesome.

Rhanna on New Year's Day
We also managed to go to the shops today and spend our christmas vouchers, it was so fun just picking up stuff in River Island and not looking at the price 🙂 so even though mums been poorly we have managed to spend time doing things, we went to an amazing Indian restaurant on New Year’s Day it was very yummy and my dessert was more than yummy hehe!

I think we all know that mum hasn’t had the plateau thing we keep waiting for but we have to keep heading forwards and doing all we can, to us we can’t stop and in lots of ways we are very lucky, the article in the Daily Mail was really good, from that we have been contacted by other people who want to help.

Back to school tomorrow yippee :/ please keep us in your minds and hope that mum gets better as we go further into the new year.
Love you mum all the way to the moon and back again xxxx xxxx xxxx xxxx

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13 responses to “A bumpy start to 2013

  1. Colin ketteringham says:

    Hi Sam,Olga Korbut is following me on twtter & Facebook .
    Olga lost a friend to MSA.
    I’m having an absolute nightmare with msa at the moment,
    I’m on morphine 24/7 for the pains in my legs,they just won’t let me have any peace.

  2. wilma0750 says:

    Samantha wish i could fix you tomorrows another day , didnt we have just the best time over the festive period and sunday was awesome sharons never changed a bit just like like uz were 2 daft lassies sometimes forget how old uz are think maybe uz were 12 on sunday lol ,its lovely to have her back in your life along wi daft anna thats some trio lol.maybe with a bit o luck they nurses will get on top off your wound which would be grt . rhanna you have proved your wee self over an over again you still astound me wish i had your strength and andy aswell but am sure we will get there xx

  3. Just to say as always Sam, Andy & Rhanna, Geoff and I are in awe of your strength and determination, keep fighting Sam, if the prayers we send up have anything to do with it you will “plateau” soon sweetheart.
    Love always C & G xxxxx

  4. illa says:

    my prayers with you when you go and see new specialist ! be stong you will be ok .
    all love .i am sitting in my flower shop thinking abouth you .good bless you .xx

  5. Hi,
    Thanks for your blog and courage your family continually demonstrates.

    I shared the link with the international members on our MSA Community in 5 languages connecting patients and caregivers across the language barrier:

    http://www.rareconnect.org/en/community/multiple-system-atrophy

    Rob, Community Manager, European Rare Disease Organisation, EURORDIS

    • Hi Robert, that is so fantastic … Thank you very much, anything that helps spread awareness and help raise funds for research can only be a positive thing!!! We are so grateful for all the support we receive!! Thank you is never enough …. ❤ Sam, Andy and Rhanna xx

  6. Rebecca says:

    I hope this year is filled with great memories and new adventures for you and your family. Stay strong and keep your spirits up! I have been reading your blogs often. My grandfather just passed on December 26th from MSA. We did not know what out was till this, passed november but we were all so greatful to have him here for one more holiday! Keep blogging and enjoy 2013!

  7. mjerm@tiscali.co.uk says:

    You have a lovely smile Keep smiling in 2013 and fighting the MSA we’re all thinking of you x Janisx

    >

  8. My prayers are with you all, I read your letters Sam, and I’m charmed by your spirit and impressed by your strength and will power. I also love the letters your daughter Rhanna writes. So happy you also have Andy.. I’m praying for a treatment and a cure. I wear my MSA bracelet every day and when ever I can I spread the awareness of MSA. God Be with you and your family.

  9. Patricia Thomas, George Thomas says:

    My wife who has MSA and I have been following your postings. Very informative and we hope you can keep your spirits up as you have done so for us. I’m a former prison officer myself (Arizona[USA] Department of Corrections.) I hope you both can call upon the hard struggles of your prison years as you confront MSA. Many’s the time I’ve done so since leaving the world of prison. My wife was diagnosed with MSA 2 years ago. She’d shown many symptoms long before the diagnosis which no one even suspected. Since then, it is surprising how many doctors have heard of MSA, but few others, no matter how well read, have. We’ll keep you in our best thoughts and prayers.
    George Thomas

  10. terry connolly says:

    i am glad to see some happiness between the lines……its the little moments that will count………keeping you all in my thoughts and prayers……………………..

  11. Many many thanks to every single person who reads and follows our blog, please continue to forward it, we have had an amazing response and spoken with so many uplifting people, made many special friends and the support has been incredible. Thank you seems so inadequate but we truly are forever grateful to everyone, the MSA Trust has been invaluable to my family xx

  12. Debi Holcomb McKinney says:

    Hi, Sam….I have the same disease that you have and, yes, I hate it, too! I sleep a lot also. I had to have a test about a month ago because I’m having a problem swallowing. I went to the neurologist 2 weeks ago to get the results of that test and ran into a big problem on the way to that doctor. My husband was driving and, on the way to the doctor’s office, I suddenly went to “sleep”. I don’t remember anything else about the day. I don’t remember seeing the doctor or anything. I apparently went into a coma and “woke up” a day later in the hospital….This was on January 3. I came home several days later but there’s no idea why it happened or if it will happen again. It’s the second time it’s happened and I’ve been hospitalized for it. I wish there could be some answers for it….medication for it….a CURE for it!!!!! It’s very frustrating, isn’t it??? I’m so glad that you have your husband and Rhanna. I have my husband, my son, grandchildren. I’ve lost many “friends” because of it…..people have decided that they don’t want to be around me since they don’t know what’s wrong and they don’t want to be around someone who’s “sick”….I don’t understand that. Oh, well, their loss, I say! We’re good people…..and they could learn a good bit if they would try! I suppose it would be very hard, from their point of view.

    I hope that you feel better before long. Sleep as long as you need, my dear friend. You must need the rest at this moment. Your body will do what it needs and, if you are tired right now, rest. Our bodies know what they need; they’re amazing machines. You are in my prayers always. So are your husband and Rhanna. I hope she does well in school. Ahhhhh….to be that age again!

    Feel free to write me any time….or have Rhanna do it, if she wants. I’m glad that you’re friends with Olga Korbut….lucky you! 🙂

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