A couple of months ago, I realised that I hadn’t blogged for a while and I thought to myself that I should get back to it and write a post. But, if I am honest I just couldn’t be bothered. It wasn’t that I had fell out of love with the Bouche blog or that I didn’t want to write (I have had plenty to write about!) I can’t even say I haven’t had time as I had six and a half weeks off in the summer after having carpal tunnel surgery!
I can’t really pinpoint what has made me not want to blog. It is probably been an amalgamation of things. I know feel like I want to blog again and hopefully this time, I won’t lose my momentum.
My last post told of my pending motor test for HD and touched very slightly on how I was feeling about it. I was very nervous as I had convinced myself that I was showing signs of HD. I have always had a firm plan regarding any kind of testing for Huntington’s disease.
I am very anti having the genetic testing for Huntington’s disease done. I have always said that if I was concerned that I was showing symptoms that I would have the motor function test done first. If this showed that I was showing some symptoms, then I would have the full genetic test done.
So I had the motor test done and I am not showing any symptoms of HD, which means I won’t be taking the gene test in the foreseeable future. Which came as huge relief. It also gave us the green light to start trying for a baby. Our baby plans came to a halt last year as Mr Bouche’s mum was diagnosed with lung cancer in February 2012 and passed away in November 2012. But, we decided to start trying in July this year (I have another post on this, following shortly!)
I have put all my personal fears to rest for now. However, Daddy Bouche has been going downhill slowly in 2013. Nothing major, but I just know in his eyes he has had enough. He has had some chest infections and his eating has become a little erratic at times where he does not want his food when being fed. He coughs quite a lot when being fed and his feeding is becoming a concern as he cannot be fed safely anymore.
After a meeting with his gp, speech therapist and staff at his home, it has been decided between us that he will have a peg fitted to feed him directly into his stomach. I have really battled with this in my head as his eating was the last one pleasure he had (albeit eating puréed food). I feel like I am forcing something on him that he wouldn’t want but I also cannot let him be fed dangerously or not at all. It has been really hard and we are just waiting on the appointment for the gastroentologist.
My younger brother M has also decided to have the HD test a few weeks ago and he gets his result next week. I am terrified for him. There is a part of me that thinks he has HD and I have done for a long while but I still hope that he is HD free. My wonderful uncle (Daddy Bouche’s brother) had the test earlier in the year and was negative which was amazing news. I just hope M has the same result!
More to follow……
Bouche x x x