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 which I have had since birth but I didnt find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then 15) I lost the 1st cochlear implant in my right ear after 7 years due to a bad, accuring 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

3 August 2017

using the remote and mini mic...

this is the remote (left)  for the kanso you have to change it to  "mic mode" to use the "mini mic" i plug the mini mic in to Phone/lpod/ipod or ipad  its a bit of a learning curve using it! But once you know how to use it its brilliant so far ive listened to the radio on my phone!

7 July 2017

respiratory help...

I had an appointment in halifax hospital only because huddersfield hospital cancelled their appointment to see about my respiratory muscles and see if need any help with.this. we met a dr Ting who was happy to meet someone so rare with the condition i have! He took my history down and my sleep pattern. l have been given another appointment for tests to see if i need any breathing apparatus at night.  i have been sleeping long hours being deaf nothing wakes me! i have also been getting more out of breath when it comes to going upstairs and walking more than 20 minutes has left me using my manual wheelchair 

1 May 2017

Mito gene results...

Its that time of year again! the yearly visit to see Prof Turnbull and his team! We had to spread it over 2 days as my eye dr was on the Monday and then prof turnbull n team on Tuesday (dont ask why! i think its coz its in a whole other building!)the eye dr was worried mostly about my eyes being dry and gave us some gel to put in 4 times a day. we asked about maybe re putting in the brow suspension in the left eyelid but he said it wouldnt be worth doing as my eyelid muscle is weak.

3 years ago, me and my parents gave blood for a new test its been a long time waiting for it! in the hope we would have some results from that test and they did!   We knew that my parents were carriers but Prof Turnbull said it was very complicated and complex and he drew a diagram to help us haha but in hindsight i surprisingly k new most of what he meant as he tried to explain it. We now know  the name of my condition  as "mitochondrial disease RRM2B" It was a relief to finally have an actual name and gene! he told us it was one in 500,000 that i have this condition which was a bit shocking! i knew it would be rare but not that rare!

Other than that Prof Turnbull was worried about my breathing  which was making me tired and so he said maybe i will need help with that overnight as he was worried about me sleeping long hours.

He also noted that i had to be really careful not to break any bones if i ever fell over as that would be a disaster in the healing process.

He is also going to arrange for me to have some physio just to keep my muscles moving  

Found out about mitochondrial disease open day where i meet up with others who have the condition in October i always look forward to that!

30 March 2017

wet room

Me and the family have opted for a wet room for me as my needs are becoming more common i find it hard to get off the toilet without grip bars and we are thinking of the future when it comes to bathing me we currently had a bath which i struggled to get out of so the wet room has taken over 2 weeks to do so we are lucky we have a 2nd toilet as the builders have been in bathroom! They have also given me a higher toilet to get off more easily when im having a mito attack  pics to come later  

12 March 2017

kanso review

kanso review 

ive now my kanso for 2 or 3 weeks now and its just as good as the N5 it took a few goes for me to turn on and turn off manually (we had to go back to the ci centre as they forgot to put the automatic switch off setting on!)

Disposables last a good few days depending on how much you wear it and its really good to just switch it on and go.

ive had 3 programmes on my kanso to "play around" with. i have 3 programs on it 2 new maps. At first i had it on old map as that was i was used to but it seemed quieter than normal so i switched between 1 and 2 over the last 2 weeks which are louder and better and im surprised how quickly i adapted to the maps. i now find my old map quieter and hardly use it My only complaint was that the microphones are very sensitive and all i could hear was my hair at times but it gets quieter in the background when sounds are around. 

i have only used the accessory microphone once in my phone listening to the radio which was clear 

i havent had any problems with the kanso fallling off unless someone knocks it when hugging me! 

an advantage for me is i can wear earrings again without the back pin hitting the processor. its still really weird i keep going for my ear when taking it off and there!s nothing there! 

20 January 2017

I get kanso on 17th February! Can't wait to try it out!