Genetics Appointment

Today I went with my Mum to a genetics appointment at the Norfolk and Norwich University Hospital to meet with a genetics consultant from Addenbrooke's Hospital

He was very interested in the various different conditions in our wider family. Having found out all about our family tree he does think that my condition may start with me (a 10-30% chance) and not necessarily be inherited.  Mum and Dad have been offered the genetic blood test so that we will know for sure and then know who else in the family may be affected.

Like the other doctors I've seen, he was keen to reassure me that the quite rapid weakening of my muscles over the past 18 months will not necessarily continue and should plateau out, at least for a while.

I am currently still waiting to see a physio since being referred to the Colman Hospaital in Norwich. This was supposed to happen following my appointment with the consultant there at the start of January but I am now chasing this up having heard nothing and would like to know the best exercises I can do to maintain the muscle strength I do still have!

The good and the not so good!

So today started well. I could reach to defrost our deep freezer and I managed to peg out the washing by bringing the line down low before propping it up. Hanging out the washing is one of my favourite household jobs and I'm glad I can still do it - just!

Then the not so good. I now can't take clothes off over my head by myself unless I lay on the bed and wriggle from side to side! So the dilemma of going swimming was what can I wear that I can take off by myself? I found a shirt and cardigan, so ok.

Swimming has always been easy for me and now it is not. My foot hurts when I try and flex my right foot to swim breast stroke and my arms fail me after half a length of front crawl (in reach and strength). I have been trying to swim once a week and make myself do 20 lengths but it is very hard work. Then I got to the shower with my shampoo and remembered I can't reach to wash my hair in the shower and normally prop my arm up on the side of the bath to do it. Anyone who knows North Walsham Victory Pool will know that the showers are fully on display at the side of the pool - great!!

So feeling quite down as I walked out to the car but it's a beautiful day and I looked up at the sky but I forgot to lift my right foot and tripped over in the car park...aaagh!

Welcome to the "Atthill Life" Blog!

As many of our friends and family are aware we previously had a blog called “Owain’s Journey”. The purpose of that blog was to keep everyone informed of Owain’s progress and treatment during his battle with cancer. He was given the all clear back in 2009 and during all the regular check up’s since everything has been ok.

The main purpose in starting this new blog is to keep you informed of a new challenge in the Atthill household. In November 2011 Sue received confirmation that she has FSHD which is a form of muscular dystrophy. Again we are privileged to be surrounded by friends and family that want to know how things are and how Sue is coping; well this is for you so that we can update you more regularly.

We’ve called this blog “Atthill Life” as from time to time we will give you updates on the rest of the family as well.

So, sit back, hold on tight and enjoy Atthill Life with us…