Huntington's Disease Revisited

Mike

Huntington's Disease Revisited

Mike
This is a fantastic forum, filled with helpful, patient and understanding people who - for the most part - are going through similar situations. There's a sharing of hope, frustration, exhaustion... and a camaraderie that only comes from being in the trenches together.

When I first came here I was distraught and "at the end of my rope". As much as I love my wife, I didn't see how I could continue giving her the care she requires. I quickly found this forum to be a much-needed respite for me... for sixty minutes each night I could joke, empathize, smile (even laugh), and get advice from this group of kind strangers who quickly became friends. It helped me far more than I ever hoped for.

I always felt a little funny when asked how my day was, or in particular how Joanne was doing. The questions came from a loving and caring place but I struggled with how to answer. What I didn't want to do was burden everyone here, every single night... so I didn't feel comfortable giving specifics. I had to be vague (for the most part).

Huntington's disease has no cure. There is no remission. There is no hope of even slowing its devastating progression. Generally speaking, there are no "good" days (although July 23rd was a miracle for both of us that I will always treasure). Regarding Joanne, the way it dehumanizes such a gentle person makes me question my faith in God at times. When I see my children helping out, it sometimes makes me tear up and I have to leave the room... I can only imagine they are thinking there's a 50% chance that this will be their fate as well.

Her decline in 2018 has been shocking, but looking back I suppose it was to be expected... it's the hand she was dealt, playing out. Although I know what's waiting at the very bottom, I have no idea how deep this abyss is... I just pray to God that I have the physical and emotional strength to care for and to comfort Joanne until we find out.

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