Happy New Year everyone!!
It has been an interesting few months, to say the least. Im sure we are all surprised how 2020 turned out, the changes, challenges and everything else it brought!
I have been seeing a lot of posts about 2021 and how people are very excited about the new year. I am too, don't get me wrong i always love a new year but i do think, for me personally im not going to put a lot of pressure on myself for 2021!
Who knows when these lockdowns will end!
I had such a feeling of disappointment when i did not fulfil my list of dreams and adventures for 2020. (Even though it wasn't my fault a pandemic hit...)
I am excited for 2021 as it's a new year and a chance to have new adventures. Im currently working on a new blog post - 100 things to do in 2021. This could be simple things such as visit a local park all the way up to larger challenges such as restore my Honda 50... But let's not spoil the only content i have planned at the minute..
This post i wanted to introduce myself to all my new followers, remind people of my story, and the help support, advice and community available to those in the Huntingtons Disease community.
So... Here we go...
(I promise ill keep it short and sweet)
My name is Ashley and i am 27 years old, and live in Northern Ireland with my family. My connection comes from my father's side of the family as he suffers from Huntington's Disease, although i dislike the wording ''suffers from'... Daddy is in the later stages i suppose you could say and resides in a nursing home close to his immediate family. Sadly due to Covid - 19, i haven't seen daddy in months. During the summer i was able to visit about 5 times, these visits were once a week, for half an hour behind a screen with no contact, sadly due to a rise in cases, the home had to shut down again.
It has been an incredibly difficult year not being able to see dad, but let's talk about that in another post.
(Hey, look, more content for 2021)
Dad was diagnosed with Huntington's Disease when he was 40 years old, as he had begun showing symptoms of the disease like many before him. His personality changed, he was getting forgetful and friends and family were growing more concerned as they noticed different attributes they had saw in his mother. Dad inherited the H.D gene from his mother, Betty, and sadly other family members have passed from the disease or are still living with the disease.
*This photo was taken Pre Covid, honestly most i have shared this year (2020) have been as i haven't been able to see him much. apologies for the photo repeats*
I have very little memories of my grandmother, those that i do have are not the most pleasant. She sadly passed when i was rather young, but i do remember visiting her in the nursing home one thing i do remember is that her speech was very unclear.
The thing i love about the HD community here in Northern Ireland is, when visiting another family, the 'Grandmother' of this family, knew mine. The lady i was speaking with used to get her hair done with my granny. It's a small world here in Northern Ireland.
Dad lived at home (in his own house) for around 11 years while the disease worked its way through his mind and body. It wasn't always easy, i was 14 when dad was diagnosed and sadly i was getting the brunt of his anger. By the age of 17 dads required more care, he wasn't able to do things on his own anymore. Luckily we were able to get carers in and over the years, his care package was increased as his needs required it.
To keep this short and sweet here are some positives and negatives...
Some of my positives of 10 + Years of H.D -
I got to make amazing memories with dad, knowing his time would be shorter than most, i wanted to make memories i would have forever.
We got to spend more time together, because he needed care and help with simple daily tasks, i was around more.
The experiences my brother and i have gone through has brought us closer
I have made some amazing friends around the world through H.D, this is one of the most amazing positives i could take from this whole experience.
I have made a career and hobby out of H.D
We cherish every big day with dad (Birthdays, Anniversary or Holidays)
Lots of laughs and selfies
Some of the more negative experiences of 10+ Years of H.D
I became 'the parent' at a very young age
I have been watching my dad suffer for years
Sometimes things would happen to bite you in the ass. By this i mean sometimes things would creep up unexpectedly and you weren't prepared for the outcome
I wasn't always supported by medical professionals
In 2016 my mental health suffered
Personal care at the age of 20 isn't easy
Lots of tears
*Honestly i dont like to dwell to much on the negative, i did in the past and honestly it got me nowhere, now i like to think about the positive and what positives I can find*
I am untested, living the best life i possibly can trying to find the positive in each day.
H.D hasn't been easy and has definitely thrown up many challenges over the years but it has also opened many doors, introduced me to many friends and made beautiful memories.
As much as i would love for my dad not to be sick, i wouldn't change the past ten+ years for the world. The experiences and challenges i have faced have made me the person i am today. Someone once said that God only gives us what we can manage. Im not sure if i was managing very well in the early years, but i have done my best. I am stronger now and want to help others by sharing my experience.
I have dealt with Social workers, Dieticians, GP's and many other medical professionals. I have received the 2 am phone calls that the ambulance has been called, argued about personal hygiene and fought about spending too much money on nonsense. I have worried about how the bills will be paid and placed myself between dad and the floor to save him being injured. I have sept in a hospital chair and fought over the state of the house or why i am late to pick dd up...
I don't claim to have lived through it all, but i have been through a lot and just want to share my story in the hopes that anyone going through the same or similar can see it is possible to keep going and have the strength needed.
It is okay to reach out for help, whether that be to family, friends, medical professionals or your local HD Charity/ Society/ Association.
I truly believe that the best way to fight H.D at the minute is raising awareness, i am not a medical professional or scientist so i am pretty useless when it comes to finding a cure... But i can help raise awareness and reduce to stigma H.D Patients face.
Im just warning you, my spelling is terrible i use the word awesome ALOT! and repeat myself all the time. I post randomly and cover anything from Huntington's Disease to recipes, joining Tinder and even some fashion picks. I may not be able to help you professionally but i can listen or read and would love to connect with more people so please feel free to get in touch. If you are unsure if your local area has a Huntington's Disease organisation please let me know and i can help you either find out or get in touch with them.
It can be very scary when Huntington's Disease enters your world but don't be scared.. We are all here to help support, guide and share our experiences.
I feel like i say this every year but i am going to try to be consistent this year, so PLEASE drop me a message or comment, ask me anything, share your story or give me an idea on what to write about.
There are many other posts, covering a range of topics, so enjoy reading through them and good luck with the spelling.
You will find a Book Shelf tab on this website where i have shared some books about Huntington's Disease and you will also find a page where i have shared some of my amazing HD Friends.
Its been great chatting and i cant wait to share 2021 with you all.
If you would like to read more about my general story you can visit You, Me and HD where i have been honoured to share my story during the month of December.
Simply CLICK HERE to view the blog post.
If you would like to tell a friend about #mnotdrunk i would greatly appreciate it - 𝒯𝒽𝒶𝓃𝓀𝓈