I set up this blog to share my experiences with you throughout my journey with dystonia, from my high and lows, through to my rants worries and frustrations.
-
Subscribe
Subscribed
Already have a WordPress.com account? Log in now.
mylifewithdystonia 
Hello Shannan, I’ve included a link to your blog in the sidebar of my blog, Chronicles Of A Dystonia Muse – http://dystoniamuse.com. Wonderful to see you writing about your life with dystonia, a tremendous help to others and a boost to awareness! -Pamela-
LikeLike
Thanks Pamela it’s very much appreciated. Have you any advice on how i could write day to day blogs about my dystonia as im finding it difficult as i continually suffer with the condition periodically through the day and night, there isn’t a long period of time without my spasm or cramping. Im worried that my blogs will be quite similar. Yes some days are worst than others and my moods differ but generally the feeling of my dystonia is the same. I just want my blog to be effective as im very keen on helping others out with the condition as hearing other peoples experiences has help me. lots of love shannan x x x x
LikeLike
Shannan, I blog weekly at most but my blog was never intended as a daily journal but rather as an educational and supportive resource on life with dystonia. I also want to respect my subscribers and refrain from inundating them with posts at the risk of losing their attention. However, there are many bloggers who write more frequently than me. My suggestion is to think about what you are trying to communicate and post what you feel is important for people to know. I also encourage posting as a way to work through your own journey. I’ve grown tremendously from writing my blog and it has helped me to put my life in perspective. -Pamela-
LikeLike
Many thanks pamela this has really helped 🙂 x x
LikeLike
Hello Shannan!
I’m sorry to hear about your diagnosis especially at such a young age, but you are not alone and wanted to share with you my little story.
I’m 20 years old and at your age because pregnant with a baby boy who I named Cody.
he was born with a few medical issues but thought nothing of them when he go out of the hospital. 9 months later we found out he wasn’t reaching milestones and we found out that he in fact has Dystonia. It’s been a rough journey so far for my little fighter but I wanted to tell you that I admire you for not giving up and staying strong. don’t give up!
LikeLike
Hi huni
Thank you for your message and I aim to remain positive!
I’m sorry to hear about your little man Cody, he is one true little fighter! Dystonia is a hideous condition and one in which nobody deserves to have, especially someone as young him. I admire your strength and courage to as I bet this has also been a hard a time for you. Keep strong and keep battling as medicine is advancing everyday.
Much love to you both and please let us know how you are both doing. I’m always here if you ever need a chat.
Lots of love
Shannan
x x x x x x x
LikeLike