Despite my username, my real name is Taylor. My dad was diagnosed last year, at first I was ignorant to it, I had no idea what HD was. But after he was diagnosed I looked into it. I became very depressed, my first time reading about it actually made me sick.
But here we are now, I'd be lying if I said I don't think about it. There are days it goes through my head. How I start thinking I can see symptoms in myself, then there are other days I can go on as normal. But as of recently, my mum was discussing it with my aunt. And everything I felt back when my dad was diagnosed has hit me again.
For a week or so, I have been going over getting tested or not. Looking for symptoms in myself. And getting scared for what this will do to my father. I'm currently seeking councelling, however it is only for 6 weeks (because of our health care) and each sesssion is every two weeks, however I feel I might need it more often.
That's why I'm here, I would just like to talk to someone. As I feel right now I am stuck in my head.
Sorry it's a lengthy read.
gotta say I empathise with ur situation pretty well, my dad was diagnosed when I was just a baby and tbh ive never seen him without symptoms. To me he's always been wobbly/unable to walk, short tempered, difficult and needing assistance with almost everything. It made living with him challenging and defiantly created a stressful household, having said that I do feel like it made me a lot more thick skinned and able to see the funny side of things. Without sounding completely insensitive, I would rather (in good humour) take the piss out of my dad for shitting himself than dwelling on the harsh reality of him being unable to care for himself, yanno? idk its just my way of coping, of cause I mean no harm by it and my dad is just as crude so I fine it to be a good approach.
The amount of stories I have from my childhood that initially could be taken quite seriously but I am able to tell as some hilarious tale that has people in stitches now because of a different approach I take. I am a firm believer in mind over matter which completely helps to see things more positively (granted some situations might only seem funny in hindsight but at least allow urelf to find humour in things that u find difficult to laugh at now).
I'm 18 (almost 19) now and living with my mum, older sister and my mum's partner (and have been for about 4 years now) my dad initially moved into a flat when we moved house, still in the same town as me my mum and sister but just not under the same roof. My mum would visit him everyday to clean and cook and I would go at least once a week from school. This wasn't a very practical transition and it gave my mum a lot more work than when we were living with him. It took a nasty fall for us to realise that dad needed full time care and so we moved him to a care home which me and mum visit weekly. Honestly not living with my dad is a huge weight off my shoulders, there's no worry of cleaning him up at dinner times or cleaning up after he's left a room or cleaning the stairs bc he's spilt something on them (for reals people with HD are the messiest effing people I have ever come across). Anyway my point is that things are easier now, my mum is happier now (my sister is still bloody annoying but life was never going to be perfect). I hope that ur situation improves and that u find ways to make light of the crap situations, maybe this is something that comes with time.
I am also toying with the idea of testing and would love to chat more, see if we can help each other out a bit.
Thanks for replying.
I totally get what you mean about the humor. My mum always says to me "If you don't laugh, you'll cry." It's good to hear from someone in my age group, at the start of HD in life it usually feels like a big dark cloud. I would like to eventually find the way of looking at the more positive side of life, and I think I will in time, hopefully the counselling works.
Thanks for replying to me, and I would like to talk more.
I'm gonna start checking this website out more so hopefully we can keep up a conversation if shit starts to hit the fan. Things do definitely get better once you adjust and normalise everything but obviously the bad days have a habit of working their way back to u. My advice would be to keep ur chin up, its okay to be down from time to time but in the grand scheme of things life could be a lot worse. I hope ur counselling improves ur outlook and write back if u ever feel like it. cool user name btw, I was really into twd at the start but kinda drifted off it around season 6. Daryl was my favourite tho (obviously).
Hey DarylDixon and Taylor,
Thanks for your posts! It sounds like you have been through some similar situations. Going through the testing process can be tough and it is great to see that you have support through counselling. Building a support system is important and it is awesome that you can use the blog to reach out! The most important thing is that testing is personal and to make sure that it is the right time. Hope that helps!