When I made a conscious decision to marry John, despite his unknown gene status for Huntington’s disease (HD), I knew full well the possible consequences of my decision. I was only 23 at the time, very naive, and didn’t really understand the ramifications of this horrific disease. HD is a fatal, genetic disorder that progressively destroys the nerve cells in the brain. There is no cure. http://www.hdsa.org
With the 50/50 chance of inheriting the disease, I knew, based on statistics, that at least two (2) of the four (4) Marin siblings would carry the mutated huntingtin gene. Who is at risk: http://hdsa.org/what-is-hd/#risk
But, what I didn’t realize, was that it would be so hard, so emotionally depleting, so sad in so many ways.
My advice to those struggling with a challenging issue, like Huntington’s disease, is to:
Talk to a counselor
Talk with your primary care physician about anti-depressants
Attend a support group that addresses the issue
Have open communication with family
And never lose HOPE
Two good articles to help you through tough times:
Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.
This HDSA group is open to caregivers to a loved one with HD who does not have access to an in person group because of distance, time constraints or whatever. If it is easier for you, please register. The group will meet monthly with a changing leader and changing members due to expanded geography. To sign up: https://www.supportgroupscentral.com/join_as.cfm?cid=27
We Can Never Lose HOPE………...
I will be selling my nonfiction book Watching Their Dance at the HDSA Annual Convention in Los Angeles this week. HDSA is receiving 100% of the proceeds.
Since John and I retired, we have traveled in our 5th wheel umpteen times, across the U.S. and back in 2010, and seen beautiful country. We almost missed this unusual canyon near Page Arizona. Luckily, we over heard a family talking about it in a fast food joint and decided to stay the night and do the tour the next day. Unfortunately, there wasn’t a campground nearby, so we became trailer trash and stayed in the Walmart parking lot .
Antelope Canyon is on Navajo land east of Page and it was formed by erosion primarily due to flash flooding over the centuries. Our tour guide was a cheerful native gal whose grandmother discovered the canyon.
The Navajo name for Upper Antelope Canyon is Tsé bighánílíní, which means “the place where water runs through rocks.” Lower Antelope Canyon is Hazdistazí (advertised as “Hasdestwazi” by the Navajo Parks and Recreation Department), or “spiral rock arches.” Both are located within the LeChee Chapter of the Navajo Nation.
Put this on your bucket list, because it’s amazing!