Welcome

Welcome! My health problems add craziness to my life. Here I post ideas I've tried, also questions I'm still asking. I have an electrolyte disorder. So I have crazy neuro stuff like complicated migraines, alkalosis, loosing my speech and paralysis. (including legs and hands) Little by little, foods had to go, they affected my brain and immune system. So I avoid like the plague: soy, dairy, gluten, nightshades, and try to avoid refined sugar. My body requires pink salt and electrolytes. I now use a speedy red wheelchair that I love. I've craved a simpler life, but how do you do that with crazy health stuff? I've already had a fire and flood, so I really don't value possessions. I value people and experiences. I am not compensated for any posts, just my opinions.

Monday, May 9, 2016

Periodic Paralaysis reported on in British newspaper

Here's an article written about Susan, who runs a Periodic Paralysis support group that I joined and find immensely helpful. Susan Q. Knittle-Hunter, and her husband Calvin Hunter do amazing things to help people like me with support, and trying to help make the public aware of our situations. This is what my neurologist gave me a tentative diagnosis for last year. Susan has a rare form of Andersen-Tawil Syndrome (ATS).  She can switch between low and high potassium in the same episode. I'm the hypo form, always low in potassium. A London newspaper did several calls to interview her. Our facebook group shared some concerns we have, Susan passed the concerns on to the reporter. I have concerns like I feel that doctors aren't taught enough in med school about nutrition and rare diseases, and electrolyte disorders (outside of only emergency room visits, as opposed to long term complications). Really glad for the awareness this paper is trying to do. Most people it takes 20+ years to get diagnosis. Newspaper article 5 May 2016 click here:  Woman wakes up PARALYSED...50 years to be diagnosed...

Here is the blog Susan writes: http://livingwithperiodicparalysis.blogspot.com/
I love the facebook group. People from all over the world post challenges, ask questions and share things that worked for them. Right now the group is over 500 people.

Coming soon: I'm working on posts about adaptive things I'm trying, videos and blogs that I found helpful and my thoughts on permanently going into a wheelchair. 

No comments:

Post a Comment