In 1872, the American physician George Huntington first described what we know today as Huntington's Chorea or Huntington's disease. The term "chorea" describes how people affected with the disorder twitch, jerk, twist and turn in a constant, uncontrollable dance-like motion. Today, physicians commonly use the simple term Huntington's disease (HD) to describe this highly complex disorder.
Until recently, scientists understood very little about HD and could only watch as the disease continued to pass from generation to generation. Families saw the disease destroy their loved ones' ability to feel, think, and move. Many times, it was either misdiagnosed or never even given a name.
"HD results from the genetically-programmed degeneration of nerve cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance. Specifically affected are cells of the basal ganglia, structures deep within the brain that have many important functions, including coordinating movement." (National Institute of Neuorlogical Disorders and Stroke, Jan. 2016)
In the early 1990's, geneticists were finally able to isolate the HD gene to chromosome 4 with certainty, so now genetic testing can easily and accurately identify the disorder in those who are already symptomatic, and, most recently, testing is now available for the offspring of the diagnosed adult. Because, you see, each child of a person with HD has a 50-50 chance of carrying the HD gene as well.
If one carries the gene, it is not a matter of if, but when, symptoms of the disorder will eventually begin to appear, as neurons degenerate.
I have found varying statistics on the prevalence of HD in the US. Anywhere from 15,000 to 30,000 people are presently affected, and up to 150,000 have a 50-50 chance of carrying the disease, which most often begins to express itself between the ages of 35 and 55.
Why am I sharing this information with you?
Well, a few months ago, my dear mother-in-law was diagnosed with HD. The doctors' suspicion was confirmed with genetic testing.
So, now what?
Because of the nature of this disorder...and the nature of our family...we've all decided that we need to face this thing together.
Between us, Lori and Joe, Stacy and Billy, and all six grandchildren, we are going to support Mom and Dad in any way they need or want...because that's how we roll!
The Westbrook motto, dubbed by Don, of course, is "Adapt and Overcome".
This is not a disease like cancer, that involves a battle, treatments and a possible cure. No.
Although new drugs and therapies have been developed to manage it's symptoms, HD is not something that can be fought and conquered.
But, VICTORY will be Mom's....in that our family will stick together and rely on God, allowing this time to make us even stronger, both as a family and as individuals. We will choose, just as she will, to glorify God along the way. We will do everything we can to help Mom maintain her dignity and grace throughout the difficult journey ahead.
We will strive to love each other, to show grace to one another, even on the days when one or more of us is at our worst... and not very lovable at all.
So, after much prayer and family discussion, we've decided that we need to move back to south-eastern Pennsylvania by the summer of 2017, to be in close proximity to the rest of the family, so we can help with Mom's physical and mental needs, making adaptations to her environment as necessary. And, to support and uplift Dad throughout this journey.
Actually, as soon as we made this decision, God began to open doors for us. It's not going to be easy... or simple, but He is paving the way.
Don was already offered a job down there with a dependable company, owned and run by men of integrity and faith. This means we may need to live apart for a short time as he works and finds a suitable home for all of us down there.
That said, I will only be posting in this blog a few more times before the year end, as this chapter of our lives comes to a close.
We will be selling our big maple syrup equipment soon, but I'm still hoping to produce a few gallons of syrup for ourselves, extended family and close friends this coming season. That's still up in air at the moment, though.
However, a new chapter of Westbrook Farm is beginning, so watch for a whole new blog, possibly, in 2017. Of course, we still have this beautiful colt to share about...and many new adventures will ensue, I'm sure!
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| He loves to play with his "Jolly Ball" at dusk! |
Your thoughts and prayers are greatly appreciated as we approach the numerous tasks of preparing to move.
2017 is going to be a year of many changes, indeed!
