I did say I was going to write this up on Sunday but, well, life happened!
As you know if you’ve been reading my posts, Mr snake and bear and I had our annual appointment for the HD enrol programme last Friday. It’s a research programme that allows the doctors to gain a better understanding of HD and it’s effects at all stages of the disease. Last year when we went there were a few other people all at the same time and we all zipped of into the various rooms, this year the appointments had been staggered so it was just the two of us. There was also only 2 professionals this year, the doctors, neurologists and psychologists are now only to be seen on an appointment basis.
So, I take part in the research programme as the ‘constant’ or Base line if you like as I do not have hd, but I live and care for someone who has. You have to do these quite difficult tests where you have a card with names of colours written on it like red blue green etc, but they will be in a different colour to their name so for example the card might read red but the word red will be written in green. You have so many seconds to read out what colour the word is written in and omg I’ve never been so confused in my life!! It’s like your brain just doesn’t want to cooperate.
We also have to give a blood sample as part of the programme – this is the part Mr snake and bear really hates because he goes into a cold sweat and turns grey.
The afternoon was over fairly quickly, I was promised a little intervention this year so I’m hoping they will refer Mr snake and bear to some professionals and he can get the help he is starting to need. He also might be getting some sleeping tablets (finally) which I have been nagging at him for ages to go see his go about to no avail. He doesn’t do doctors so this is a really big thing for him.
The programme gives me a chance to speak with people about Mr snake and bears condition openly. At home the subject is more or less forbidden and Mr snake and bear does not like to talk about anything HD related. He is going through a phase which is a well known symptom whereby he knows he has HD but he’s in denial about everything else to do with it. Which is really really hard!!
I’m always amazed though at how accepting the children are. We talk a lot together, of course they worry for their dad, and get upset by his behaviour but we always have little chats. I’m a really big believer that you shouldn’t hide things like this from children. They shouldn’t be scared or confused or upset about a situation. Quite frankly, they are very resilient and have handled things so far perfectly. Of course, it’s very early days, and there will almost definitely by a time where things will not be so cut and dry. For now though our job is to reassure and make memories!!