Huntington's Support Group

Today we were in Tulsa at our first HD support group. Four families were represented. We shared our ups and downs, networked, and gave each other a much needed pat on the back.

Here's what I came away with:
Huntington's takes away...independence, confidence, cognition. A person with Huntington's often becomes isolated. Although a person's recognition of loved ones remains intact, the ability to make decisions, understand situations and conversations, live independently, and deal with stressful situations is eroded.

Huntington's gives...the realization that every day is a gift. The ability to see each interaction with those we love is a sweet treat to be savored. The certainty that TODAY is the best it will ever be. The desire to reach out and comfort those who walk the same road we are walking.

We shared tears, stories, and many "Ah ha" moments. Everyone left with a smile on his/her face.


  1. Glad you found a support group.

    My dad has had dementia for the last few years. He just went to a neurologist for tests last week. Prob. too late. My mom is stubborn and makes excuses for those she loves.
    I'm trying to get her to go to an Alzheimer's group, but she won't. I know it would be cathartic.


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