For as long as I can remember Huntington's disease has been a part of my life.
Now that my dad is diagnosed with it, it has become a more prevalent apprehension in my life. Huntington's is a rare, genetic disease that is detrimental to the patient's life. This neurological disease causes a progressive deterioration of nerve cells in the brain.
Some of the most common symptoms that come with this sickness are involuntary jerking, lack of impulse control, difficulty with the physical production of speech, and lack of awareness of one's own behaviors.
There's many more difficulties and struggles that come with the disease, believe me, I've seen it all.
My dad's mother, my grandma, had the disease for as long as I can remember. I don't have a single memory of her as a normal functioning person. Although my grandma was never able to say much due to the disease, she’d always try her hardest to form the words, “You girls (me and my sister) are so beautiful” and “I love you.” I always felt so much love from her, even though she was never able to fully show it like I know she wanted to.
Eventually she was placed in a nursing home to get around the clock care she needed. Each visit we paid it seemed like the disease was accelerating more every time. After a couple years in the home, she passed away due to Huntington's Disease.
I grew up seeing this disease take away my grandma slowly. Now my dad has it and it's taking him too.
I think I always thought in the back of my head that my dad was going to develop this disease. He had slight variations of some of the symptoms ever since I was young. But thinking it may be a possibility versus hearing he’d actually been diagnosed are two different feelings.
When I found out my dad was officially diagnosed with Huntington's Disease, my body felt as if my heart sank into my stomach. I started to think about everything I saw my grandma go through and realized I am going to have to watch my dad go through the same thing.
My dad is my favorite man on this planet. He's always been so witty and clever and he has always put me and my sister first. My family always talks about how my sister takes after my mom and I take after my dad. We have a lot of physical and mental traits in common and it's always made me feel like we have a special bond because we relate so well.
I love this connection and am scared of it at the same time.
I love that I have pieces of my dad in myself that are visible to others. From my hazel eyes to my stubborn ways, I recognize him in myself all the time. While there are many good qualities I love to take from my dad, the disease is an uncontrollable option I might face.
There's a 50/50 chance any child born from someone with Huntington's Disease will inherit the disease. This is terrifying to think about, which is why I usually don't. The fact that I take after my dad in many other ways also worries me to the point where I think I'm more likely to inherit the disease
Even if I don't develop the disease, I'll still be carrying the gene. If I decide to have children, this gene will get passed to them and they will have a 50/50 chance of having Huntington's disease.
This makes me scared to start a family and scared that my future partner won't want to have a child with me because of the chance of passing on the disease.
Huntington's disease has always been such a big part of my life. I've had to learn to accept it. If I stay mad about what it's done and worry about what it might do, I'll live an unhappy life. All I can do is pray for strength and trust in the plan God has for me and my family affected by this disease.
