Culsana pillow

The Culsana Anti-Suffocation Pillow

Review of the Culsana Easy Breathe Pillow     The difficulties with having epilepsy is that if the seizures are not controlled, they can happen anytime and anywhere. This includes in sleep for many individuals, which brings with it a whole new set of problems such as suffocation from pillows…

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Tonight I Went to A Group

Tonight I went to a group Not the anything like a “epilepsy group” or a “writing group” but a musical type of group. I was nervous but excited but when I got there I had a amazing time. I knew however that I had this secret, this beast of a…

facing stigmas

Living & facing the stigmas of Epilepsy

Living and facing the stigmas of Epilepsy Facing Epilepsy stigmas head on is the best way to rise above the misinformation hovering around the condition, that I and many others have. It is like a dark stormy cloud above us. Beastly myths have been around for centuries about what epilepsy is and…

my label

My Label

My Label A medical bracelet or pendant is a little metal disc, that encloses information and labels the wearer. If you look  you will see i sometimes wear a pendant. I used to wear a bracelet but it got in the way alot and it was easier for people to…

throw back thursday

#Throwback Reg E Mental

Reflecting upon Reg E Mental  #Throwbackthursday    #Throwback   #Reflections   #Reflection When I founded Team Jo Epilepsy Foundation I never thought I would have got this far or that it would have turned out as amazing as this journey has taken me on. The first part of this was when I…

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New Year 2016

New Year 2016 The yearly reset button is upon us again, allowing you to change whatever you like. It’s an opportunity to reinvent ourselves but only if you have the strength to keep moving forward.  It’s one thing to sit down and create a long list of New Year’s resolutions,…

Unicorn inn

Unicorn Inn Music Quiz

Unicorn Inn Music Quiz The  unicorn inn in Margate Canterbury was the venue where Pig and porter, Owned by Sean Ayling and Robin Wright , launched with Team Jo Epilepsy Foundation launched a beer (Big K) dedicated to Kieron Drum. Kieron was their friend who passed away from epilepsy in…

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Lord Mayors Award

The Lord Mayors Award I was shocked when I received a letter many months ago with the Lord Mayors crest on the envelope. When reading the letter I was taken aback that I have been nominated for the Lord Mayor’s award, and even more astonished that I was one of…

Not friend

“Seizures are not my friend”

“Seizures are not my friend.” Sure there’s “getting used to” seizures after I’ve had the condition for so long, but there really is no getting buddy-buddy with them. I’m sure everyone with epilepsy can agree to that. It’s NOT fun. It’s unsettling. It’s uncomfortable. I wonder when the next one…

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“Not every condition is always visible”

“Not every condition is always visible.” I live with Epilepsy. I have lived with this condition for going on 24 years. I was diagnosed with this condition when I was 4 years old. I had a seizure while sitting on the worktop age 4 while watching my mother make my…