myfamilyandmsa

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

Three little letters – MSA

on September 21, 2013

Sam, Rhanna and Andy
Sam:
Well I did it, I went through with the Botox for my bladder, I’m very glad I didn’t realise what it involved beforehand or I’m not sure I would have been going! That was at the time, now I’m glad I did it, I don’t know it has made a difference yet or not it can take up to two weeks so will keep you updated.
I know I haven’t posted on the blog as often but I am so very tired a lot of the time now and fall asleep at the drop of a hat.

Yesterday the social worker and O.T were out and although we have a hoist in the room we can’t use it because of the kind of bed we have, we spoke about a hospital bed, something I don’t really want unless I can get a double ☺ but that’s not an option. So it would mean that at 39 I would be sleeping in a single bed next to my husband in his bed, not the best but Andy said it’s what’s best for me and he’s pretty sure he could crawl in beside me ☺

northern lights sam and andyWe are also trying to rush respite up a little so that we can look at pain relief etc. The same day I saw my G.P who is wonderful and listens to me as I cry and say actually sometimes I’ve had enough, I find it extremely hard when I see on the support forums and yet another MSA friend has died, its very odd because even though I’ve never met these people I still feel the grieving process for them and their families, it also brings it much closer to home that MSA is never very far away.

I stay as positive as I can and I just had the most wonderful weekend away with Andy’s parents, it was lovely, so relaxing and laid back! Thank you so much to them, for making it so wonderful, I saw the Blackpool illuminations for the very first time! Another tick on my list!

I can’t deny that MSA is sometimes getting the better of me, I sleep loads, can’t concentrate for any length of time, Andy just came in the room and I’ve forgotten what I was doing, that’s how easy it is!

Sam & Rhanna cuddle up after the op.My speech and swallow aren’t great and although my speech still kind of comes and goes it goes more than it comes now if that makes sense. We have a great support network around us, wonderful carers coming in who I see as good friends, people I can trust if I need a cry or just a moan!
An amazing family that I couldn’t live without, in fact my life would be pretty amazing if those three little letters that cause so much damage would just go away!

Andy and Rhanna are so strong and stay determined that we do as much as we can! Rhanna’s friend is organising an event and I hope it’s a huge success for her, for MSA.

I will get back to writing the blog more regularly and I’m so sorry for the lack of input from me, I promise no one is ever very far from my thoughts, be it Torsten, Carole, Kym, Lynda, sharon and everyone else, I continue to send you all my love and positive thoughts!!!!
Lots of love Sam xxxx

Sam, Andy and Rhanna

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9 responses to “Three little letters – MSA

  1. Judy Bryant says:

    Sam, I am amazed at your strength of character. You have been blessed with a wonderful circle of family and friends. I can only imagine how hard MSA has made your life, but really love your honest post . . . Not many people have the grace and strength to be so open and honest. I can honestly say I have grown to love and your wonderful family – your husband and daughter seem as wonderful too! Thank you for being so open – I’m sure you’ve touch many with this blog. I will keep you and yours in prayer!

  2. Judi Marie says:

    Hi Sam, go for the hospital bed. You will find it easier to get comfortable. My husband had MSA and we had one for him. I can assure you it is still possible to snuggle up together and the only problem we had was messing about and putting the sides up when we were both in it! That was not a good idea as it was really difficult to get them down again! Caused a lot of giggles though.
    I really admire your courage in writing this blog and I am with you all the way. Hope the Botox helps. I’ve heard it suggested before but don’t know anyone who has had it.
    Lots of love to you and the family. Judi

  3. Lou says:

    Can I just say what an inspiration and wonderful woman you are 🙂 My mum was diagnosed with MSA approx 5 years ago and until she was diagnosed I had no understanding of the condition at all. She now has a hospital bed at home and although this has separated her and dad its the best most comfortable thing for her x
    Lou xxx

  4. Terry says:

    I started following you because you have M.S.A. and so does my brother. Al, his name is on Hospice care now and very close to becoming bedridden. He can’t do hardly anything for himself anymore. It is so sad as his sister that I have to watch him leaving me. I hate this disease and I wish there was a cure. I wish you good luck. You have a great support system. For me it is only him and I. I cling to the M.S.A group because they care, and I swallow in sadness so often I need friends that understand what I am going through

    • Chris Kerss says:

      Bless you Terry it can’t be easy at all for you. It never is with MSA I’m finding. Sorry to hear your brother is almost bedridden. All you can do is be there for him as much as you can and show him lots of love. I found it helped my dad.
      Take Care
      Chris

  5. Hi there Samatha, good on you. Go for the Hospital bed, Barry has one and yes my single bed is beside his. He is so much more comfortable. As for the Botox, Barry has had it for the last 4 years. Amazing stuff and gave him such relief, worth the effort, he would have it injected approximately every 6 months

  6. Jackie Donohue says:

    Go for the hospital bed!!! My mum was diagnosed with MSA three years ago and gave into the hospital bed approx 12 months ago, it has helped her quality of sleep so much.

    Your blog makes me cry every time I read it as it proves that there are others dealing with this terrible disease! Keep positive and your so brave sharing this experience with everyone xxx

  7. Chris Kerss says:

    HI Sam,

    I hope the Bottox works for you. I always enjoy reading your blogs to here how you are doing. I am amazed at your strength, but I think this is one of the only gifts MSA gives people. I know it sounds a strange thing to say, but I am a much stronger person because of my experiences with the condition. I am thankful for that because it prepared me for what was to come.

    I’m so pleased to hear you are still out and about, good on you for getting to the Illuminations. I have only seen them once too but it was a great spectacle.

    All the best to you Rhanna and Andy.
    Love and light
    Chris xx

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