Huntington's disease is a family disease... The person with HD, the children of a parent, the siblings, the spouses, the family members, all become the caregivers in some way. I am the child of a parent who had HD, the sibling to a brother with JHD, and a caregiver. Huntington's disease may affect my family, my life, and my day to day, but because of it I am stronger than I have ever been, and braver for it.
Tuesday, February 4, 2014
Time to stop and smell the roses...
I cannot believe it has nearly been a year since I last updated on my life with HD. Since my last post was about testing, and testing negative at that perhaps I should update my readers on what has happened since then.
Since March of 13' I have done so many amazing things to help HDSA and the NYA (National Youth Alliance) spread awareness for HD. I have become the Affiliate President for New Mexico, I'm also on the board for the NYA and let me tell you it has been an awesome experience thus far. With my affiliate team we are planning several events to take place in NM this year, a Caring for the Caregiver's night, Education Day, Alive & Well viewing, Team Hope Walk and so much more. For NYA it seems to be a running pace, but I love a challenge. We've got the board back up and running, website constantly being updated and planning for the NYA Day and convention for youth's in June.
Recently I've moved back home with my family and to add, so has my dad! If you do not remember he was living in a nursing home for the last five and a half years. I am now helping my mom with my dad and brother full-time on top of my job, and work with HDSA & NYA. It has been a struggle, but we are finally settling into a schedule and it's become a lot easier to deal with.
As for what else is going on, it seems like there needs to be a vacation or at least a moment to be able to stop and smell the roses.
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