13 thoughts on “Hello and welcome to my shiny new website!

      1. Absolutely! I aim to fundraise for ‘gain charity’ as they support fundraising into much needed research into finding a cure.
        please take a look at the ‘sponsor me’ menu above to find out more…

    1. It has taken me a while to complete the site. Getting time to write my story has been the hurdle while ‘getting better slowly’ I hope you like it. In time I will hopefully add experiences from others who may have suffered from Guillain-Barré & Associated Inflammatory Neuropathies. So please get in touch if you also have a story to tell and I will add it to the site for others to read.

  1. Very moved reading through your story and I think it’s fantastic you are raising awareness of miller fisher syndrome. Good luck and hope it all goes well!

  2. Hi my name is Terry I myself have suffered with both diseases. I am at the point of learning to walk again this all started for me June 28it is now oct8.it has been hell.i went thu everything you did.i woiuld say it was the scariest thing inmy life. I have ever exsperienced

    1. It is truly horrific and I can sympathise with your struggle. Never ever give up hope! I didn’t and was determined to get back to where I was. I struggled for around 6 months and the remaining issues slowly went away over the next 6 months. Facial exercises were very tedious but eventually they did make a difference. I can’t stress enough the importance of exercise to get your muscles back to where they were. I now only have some slight deficits but extremely lucky to only have this. Once I had the energy I tried yoga to build strength which seemed to work very well.

    1. When I was ill, those around me tried to find out about this strange illness. There didn’t, and still doesn’t seem to be much info available anywhere. Hence now Im fit enough I thought to do this to try to help those who suffer from GBS and MFS. I hope that explaining what happened to me to overcome this and to describe the effects may give others hope about their prognosis. I hope you yourself made full recovery. 🙂

  3. Great story, Phil. I’ve struggled through many of those same moments on my own MFS/GBS journey. It’s good to here you’ve also had a successful recovery. The full arc of the experience is crazy, as I think back. Seems like a dream, the trach/feeding tube scars are the only evidence it ever happened. Surreal.

    All the best!

    1. Lance
      Thanks for your message. Glad you also made a successful recovery! I too have an obvious track hole but I remind my self that I would not be here without it!
      I have some deficits which are still here one year from leaving hospital, but most people don’t even notice them…luckily.

  4. I would like to thnkx for the efforts you’ve put in writing this site. I am hoping the same high-grade blog post from you in the upcoming as well. In fact your creative writing abilities has encouraged me to get my own web site now. Actually the blogging is spreading its wings rapidly. Your write up is a good example of it.

    1. Many thanks for your encouraging words. I felt it important to create the site and tell my story. In some small way I can help others understand the illness better and give comfort to those who are concerned about how their illness may develop. Healing will happen, it just takes time.:-)

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