Huntington’s Disease: Part III, Now You Know, What Can You Do?
Part III of III. Read the previous posts:
That’s my story.
At least part of it. It is not unique. It rings with elements of other stories from other families all around the world.
My life has been spared. More importantly, my children are not doomed to endure the anguish my brother and I experienced. My husband will not watch my mind deteriorate and fade. For me, the chapter on fear and waiting has closed.
But with that closure, a new door opens. An opportunity to speak out. An opportunity to use my words to increase awareness, motivate the world to action, and a cure. Thank you, to the hundreds of you who have stopped by this week to read and share. Thank you for sharing my story.
There are 30,000 people in the United States living with HD right now and 200,000 more are at risk. There are thousands more families dealing with Alzheimer’s, Parkinson’s, ALS, and cancer.
No doubt there is someone in your life (if not now, then soon) who is loving or caring for someone with dementia or degenerative illness. But what can you do? Here are few simple things done for us that made a difference.
Put it in writing. I cannot begin to describe what an impact a simple note makes, arriving in the mail and conveying the message: “I see you. I see you are hurting and I ache with you in your pain.” I remember vividly one such note, with ladybugs on a yellow background, from someone at church I admired but barely knew. To be seen in the midst of our family’s suffering, to have that silent empathy, gave me such encouragement.
Help them to remember. A friend from high school came up to me at church one Sunday and handed me a blank journal. With tears in her eyes, she told me: “I don’t know what I would do if I lost my mom. Here is a place for you to write down everything that she was, so that you will never forget.” That journal was passed among my mother’s friends, its pages filled with sweet memories I am now able to share with my children of the grandmother they never knew.
Sometimes saying nothing is best. When things with Mom were really bad, when she was angry and abusive, and I was barely holding it together, the casual hallway “How are you holding up?” was too big a question to answer (unless you wanted all of my pain and anguish to spill out onto the carpet and your shoes). A wordless hug, sometimes, is better than saying anything at all.
Remember the children. Our children were not fully aware of what we were going through, and even what they knew, they didn’t fully understand. Offers from friends to keep the kids or take them fun places were such a gift. It meant so much when we knew our little ones were able to have fun even while we dealt with the hardest facets of an adult life.
Share the story. Spreading awareness increases our hope for a future for the thousands at risk. A cure for Alzheimer’s or Parkinson’s will benefit HD research and vice versa. Check out your local chapter of HDSA. Join Team Hope in your area and walk to support those currently suffering from this disease. Get familiar with the research that’s going on, and follow websites and social media accounts committed to spreading the word. Consider a donation. Use your social media and share.
Huntington’s Disease Society of America @
Above all else, pray. Pray for a cure. Pray for an end. Pray for stamina, wisdom and endurance. We hang our courage on the hope that there will be an end to all suffering one day. Until that day comes, we wait, we love, we hold each other up, and we hope.
What’s your story? Feel free to post here.
Have other suggestions on how to get involved and what others can do to help? Share them!
Previous posts about my personal experience with HD.
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