I Wish I Had A Magic Wand To Take The Pain Away……Stiff Person Syndrome (part 7)

I’m not sure if you are able to understand what i am saying in this video clip , as my speech and tremor, took quite sometime to settle after my episode…..so let me tell you as i write.
As i was beginning to recover from my spasm, I wanted to thank all of you who are supporting, loving and caring about me, my family and this nightmare we are living in everyday.
Such amazing, kindhearted people have been contacting me from all around the globe. I am humbled by how many people have reached out to help me. I am forever in your debt . I am no longer lost and alone………but i would be dishonest if i said that i am not a little scared.
So thank you my sweet friends…….those who are close enough to hug. Those who do not live so close to me, i am sending you a cyber Nerri cuddle 🙂 xxx


8 thoughts on “I Wish I Had A Magic Wand To Take The Pain Away……Stiff Person Syndrome (part 7)

  1. Ive known you for ages hunnie and you have said about your spasms and how it affects you.i have been watching the video clips of you and I now know exactly what your going through.
    I cant understand why they still havnt given you havnt been admitted to hospital for the treatment you so so deserve.
    Jason is amazing as he knows exactly what to do when you spasm, he is like your angel, , always by your side helping you through.
    I want to help you in anyway I can, so please tell me if there is absolutely anything I can do to help.
    Your loving friend always
    Becky :-)♥♥


    • hi my sweet friend Becky
      yes my daring our friendship goes back a long time, and i know you are only a phone call away, thank you. Yes Jason has learnt so much on what to do and how to handle me during a spasm, he has probably saved my life a hundred times over. he is like some sort of mortal being, placed on this earth to protect and keep me safe. everyday i am thankful that he appeared in my life, when i was just a child.
      i am going to need a lot of help fundraising for a stem sell transplant outside the Uk. so if you have any ideas, anything at all , then please let me know my darling.
      much love
      nerri xxx


  2. Nerri I may have not been a close friend of yours but I have known you since Livvy and Thomas went to nursery together and seeing you go thru this awful amount of pain is heartbreaking you are so brave and Jason you are an amazing husband and father.
    I can’t believe that the hospitals aren’t doing more to help you no body should have to live in constant pain like you are something needs to be done for you to be free from the awful spasms that are taking over your body I have never heard of sps and have to admit I was shocked and scared watching the videos and I’m not ashamed to admit it I have cried having known you before the condition hit you and seeing what it’s doing to you now it’s breaking my heart how can a condition be so cruel I wish there was something I could do to get you the treatment you so desperately need
    Thinking of you all
    Wishing and praying for a cure stay strong nerri and keep fighting
    Love always
    Tracey xx


    • hi Tracey

      yes lovely, it has been quite some time since we have had the pleasure of meeting up outside the school and catching up on what was happening in each other life’s. i wish things were different than they are, i wish that we were standing together, laughing and chatting, after taking our children to school. i can not believe myself, what my life has become. i have fought , struggled, pushed and even tried willing my illness away. but no matter what i do , each day i wake, its still there causing so much pain.
      you are right, Jason is an exceptional daddy, our tots idolise him, its so adorable. at least i have peace of mind, that my tots will be safe, loved, and protected by their daddy, if for some reason i do not make it through this.
      sweetie, i need to set up a fundraising account for a stem cell transplant abroad. if you have any suggestions at all to assist this, please let me know. i appreciate any thoughts you may have concerning this matter
      thank you so much much for sending such a heart felt message, its very deeply appreciated
      much love
      nerri xxx


  3. Hiya nerri nice to hear from you keep fighting Hun
    I’ve had to hold a fundraiser myself last year to get a special needs bike for Jacob as he autistic he can’t ride normal bike and as it’s special bike the price was so much more than an ordinary bike anyway I held small fundraiser night in the royal oak pub and run a raffle and raised over £600 so we got his bike in one go 🙂 so was thinking of maybe doing something similar for you but on bigger scale like bigger venue to pack more people in and hopefully raise a lot more for you xx


    • hi sweetie

      i know how much you have been though yourself and i am so so sorry that i haven’t been around to chat to , just like we used to when we would bump into each at the school
      thank you for sharing your situation with little Jacob, im happy you were able to raise enough money for his bike, im sure he loved it 🙂
      i think this is a fantastic idea, if you know how to set it up my darling. what a beautiful heart you have, caring enough about me to do a fundraiser like this. you are amazing hunnie
      much love
      nerri xxx


  4. Will get my thinking cap on and see if there anywhere can hold fund raiser and take it from there will try my best to help out in any way I can xxx
    Keep fight keep strong you have loads of people around to help you get your dream we’ll all stick together and get you this treatment xxx


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