Ashley
- Feb 5, 2020
- 5 min read

Its A New Year

I hope everyone had an amazing Christmas and New Year, (yes I’m a bit late its February) My brother and i spent two weeks over Christmas with family in CT, we did so much while we were there and i am forever grateful to our family and friends for showing us an amazing holiday! Here are some pictures!

Ryan and i in the airport

Ice hockey with Eddie

NYC

Shooting (Clays)

My best friend Sydney and her mum

NYC

Ryan cant keep his eyes open

friends and family

Ryan looking like a pro skier

Radio City Rockettes

Trying to look like a pro snow boarder

Skiing / Snowboarding / falling on my ass a lot!

Auntie Vicky and I

Hunter, Eddie, Ryan and me 😀

Normally at the start of the year, i do a post about the past year and what way i would like to see this year go. I’m not going to that this year, to try to be more consistent in my posts I’m going to post once a month, a recap of the past month, catching up on all things HD related and life-related.

I do love posting but with dad not living at home anymore, i feel like i don’t have as much to say. This defiantly is not the case because there are always stories i can tell from when he was at home, experiences i have had and things i continue to deal with even though he is in a nursing home.

As you all know in 2019 i worked with the Huntingtons Disease Association Northern Ireland, well i am incredibly lucky, they have offered me another year. I guess i done something right. I am very excited about the year ahead but i will admit i was very nervous for a few weeks about another year. I’m scared about letting people down or making a mistake, my support worker also got a new job (i am incredibly happy for her) but i will miss her terribly as she was not only a work colleague and friend but my support worker for about 5 years, so she was there for a lot of the tough stuff with dad.

As you all know I’m single again and without having any kids or major ties, (apart from dad) i feel like its time for a new adventure. I’m just not sure if i want to stay here permanently or travel more, maybe even work in another country and see what’s out there. So if anyone has any good suggestions, hit me up. I’m not saying i defiantly want to move to another country but i am open to the idea, i have always loved America and travelling, learning new things and experiencing new places. It would be an adventure, and like many others in my position, i am untested for HD so that positive result looms over my head. I want to make sure i have no regrets. Let’s be fair, if i move to say Canada or America and don’t like it, i can always more home.

I do feel more confident in my role with HDANI and can say i love my job, it challenges me and the people and friends i meet/ make are amazing! I can’t complain about the work i do because i can honestly say i have one of the most fun, rewarding and amazing jobs! It can be difficult and stressful at times, like any job but its all worth it!

Last year was mad busy, i had so many trips i felt like i was best friends with my luggage and very little else, i was either going on a trip or coming home from one. I think the best one i took was to the HDSA convention in Boston. I would give an arm and a leg to go again this year, especially when it’s in New Orleans. Sadly my bank account won’t let me. So if anyone knows someone with an extra 2 grand lying around let me know. Jokes!

Making friends 😀 Morgan

See, totally over smiling!!

New Orleans 2020

Making friends 😀 Jessica you absolute Doll!!

HDSA Convention 2019

I’ve only one trip this year, America again, shocking!! My best friend is getting married in September, so i cant wait to celebrate with her. Talking about wedding’s, i have 4 this year!! Plenty of fancy frocks need to be got!!

I really want to go back to America in the winter months, it was amazing over there! I know obviously its a holiday, I’m not working, but it’s like a second home for me, i know where places are, i drive other there (don’t tell anyone) and i have loads of family and friends.

Let’s talk about HD!!

Dad has a review coming up, he’s doing okay, i can’t hide the fact anymore from people that he is getting worse. I can’t pretend anymore and to be honest i don’t want to. I’m tired of pretending dad is okay, just to make people feel better or get into the nitty-gritty of what’s really wrong. He’s sick and not going to get any better, he’s only going to get worse. Were trying to get a chair he can sit in, the OT has been working with the nursing home. He has a wheelchair and its great, feet supports, head support and all the bells and whistles. We want to get him more of an armchair type thing to sit in all day, instead of his wheelchair, I’m sure it’s not exactly comfy. The hard bit is, dad cant sit up, he slides down any chair they put him in, seat belts are no good cause they end up around his chest and rally-style harnesses aren’t any better as they end up around his neck. (I know they’re not called a rally-style harness but they remind me of the ones people use in rally cars). He’s down to about 9 stone and were doing everything we can to keep his calories up, he is on yogurts and drinks which help with this but I’m sure as many of you know this is a problem most HD patients face. Getting those calories in and making sure their good calories.

Christmas 2019 – Dad were flying to Kegworth… I think his face says it all!

So here we have it 2020, let’s see what this year brings, 2019 had an unreal amount of ups and downs! My relationship ended and i moved home after being away for 9 years. I got to travel with my job and meet lots of amazing people, members of the HD community, others working in a similar field as me and big wigs in the HD community! Defiantly meeting Therese Crutcher-Marin and getting a signed book was something i won’t forget! (When i was getting my photo taken, i had to be told to smile less) and see loads of new places! I attended the HDSA convention and it definitely changed my life and outlook on life. I got my dream job and learnt along the way! We dealt with the first-ever ‘Your dads been rushed into hospital’ and we survived it as a family!