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What is #Imnotdrunk Lifestyle Blog?
They say there’s a reason for everything.
So there must be a reason my life is affected by Huntington’s Disease.
And that is the reason for this blog.
At 15 years old I found out that my father had Huntington’s Disease, a rare, inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. The news of dad’s illness was very hard to come to terms with as at that point my father and I weren’t on great terms or even speaking, due to what the disease was doing to his mind and the way he was treating me.
My brother and I were my father's carers for around 10 years, until he was placed in a nursing home. The decision to place him in a home was incredibly difficult, we tried our best to keep him at home as long as possible, but his safety was in danger and he needed round the clock care, by professionals.
While he lived at home, my brother and I eventually ended up doing everything for him, managing his appointments, working alongside the social worker to ensure he was getting the best possible care, grocery shopping, cloths shopping, maintaining his house, paying bills, and managing his medication to name a few.
Huntington’s was difficult to come to terms with, but eventually and many years later I have made peace with this affliction. Watching someone you love deteriorate is incredibly difficult and emotionally draining. Although my dad is still with us, I miss the man he once was. I am jealous of people who have a fit and healthy daddy, and I cry for the memories we will never make together. It has not been easy over the years and there have been many struggles, but I try not to dwell on them to much. There is no point really. It wont make the disease go away, and it wont take away the fact that I live every day with a 50% chance I will end up the same way. I may have the same genetic fate that took my Granny from me and continues to rob the life of my daddy.
The problems I face now are, dad continues to get worse and new problems arise, problems I don’t know how to deal with and the fear that it will start all over again with my brother, myself, or both of us.
Huntington’s is something you can learn to live with as a carer, I know I am at risk as my brother also is. I have gotten used to caring for daddy and recognizing his needs. Something I will never get used to is the staring, the gossiping and people being downright ignorant towards my father when I would have him out in public.
Huntington’s is a silent disease, one that is not always apparent to Jane and John Doe who pass us by on the street. It is one of many diseases that are perhaps not always immediately apparent.
The #ImNotDrunk Lifestyle blog and social media accounts are to educate society on such illnesses and to try to stamp out judgments and uneducated opinions. They are a platform to raise awareness and show others in the HD community that life is for living, although we have a 50% chance of inheriting the disease, or you may have tested positive or negative. WE ARE FIGHTERS and won’t go without a fight!
We can educate others and reduce the stigma
We can enjoy life for as long as our minds and bodies will let us
We can hope for a treatment or even a cure
We can get through this together!
We may be affected by Huntington’s Disease in some way, but we are not HD. We are individuals with amazing lives that are worth living.
Everyone dies, not everyone really lives.
Tomorrow is not promised to you, today is what is promised to you,
How are you living your life right now?
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