Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story


14 May 2018

sleep study

last week i went to newcastle hospital to do a sleep study and EEG as i am having trouble with my short term memory loss prof Turrnbull said it was part of my mitochondrial disease RRM2B.
so that night in the hotel i did my sleep study witch was a gadget on my wrist and we were to drop it off the next morning 
The next day we did the EEG and spoke to prof Turnbull about how i was getting on with things we spoke about my balance as its getting worse! i stumble about like someone drunk but im finding walking with someone arms in arms. better  ive always had bad balance because of the deafness but its got worse 
As  the years go on i worry about the future i dont want to be confined to a wheelchair 24/7 i like my  independance.I know i have rachel to help me go out and about but its not the same as being on your own  ie i always need someone with me for the balance part.

we have found a lovely place called kirkwood hospice which do a drop in centre and i can do my arts and crafts there which is what i wanted a little group to do cross sthiching or knitting with ill keep you posted on how how that goes 

i am being referred back to PALS exercise group theat they do on wedsnesday;s so i can work on keeping my body moving rather than sitting at home all day 
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