A Huntington’S Thanksgiving Message: Gratitude For Wellness In Addition To The Mightiness To Work

Thanksgiving, my favorite holiday, leads me to receive got stock of the many practiced things inward my life.

First, I am thankful that I receive got non yet experienced the classic symptoms of Huntington’s disease. At year’s end, I volition plough 54 – at to the lowest degree several years beyond the historic menstruum of onslaught for my HD-afflicted mother. At my annual hard disk drive checkup concluding month, my neurologist said I was symptom-free.

After testing positive for hard disk drive at the historic menstruum of 39 inward 1999, I had expected to hold out incapacitated past times now. Doctors too scientists nonetheless don’t know plenty almost hard disk drive to explicate why someone similar me has remained asymptomatic beyond the parent’s historic menstruum of onset. As I receive got written inward the past, I orbit striving toward a well-informed strategy for avoiding onset.

I am thankful for many of the other reasons people celebrate Thanksgiving, especially family. My HD-free immature adult woman is a thriving 8th grader, too adjacent calendar month my married adult woman too I volition commemorate 21 years of marriage.

This year, I am peculiarly thankful that, without the symptoms that typically disable hard disk drive people, I tin nonetheless perform my chore equally a academy professor.

The fiscal burdens of HD

This past times Mon night, attention our local hard disk drive back upwards group’s annual opor-garai potluck, I saw 1 time once again how Huntington’s causes the involuntary movements known equally chorea too inexorably robs people of their cognitive abilities, severely hampering their capacity for work.

As a result, hard disk drive devastates families financially. When an HD-affected breadwinner loses his or her job, household unit of measurement income falls dramatically.

Other household unit of measurement members often must trim down their ain run hours to assist attention for the sick individual. In or too then instances, they alter occupations to adapt to attention needs. They mightiness fifty-fifty quit salaried run altogether.

As the flush of caregivers Mike too Raima Fernald illustrates, local too acre authorities assistance inward such situations is sorely lacking. The hard disk drive community also has fought to improve access to Social Security benefits, denied to many because outdated authorities guidelines don’t business concern human relationship for HD’s cognitive too behavioral symptoms.

In the illustration of my parents, hard disk drive wiped out their “golden years.” Instead of enjoying retirement, my “HD warrior” dad became my mother’s full-time caregiver from the mid- 1990s until her decease inward 2006 at the historic menstruum of 68.

Instead of trips too fourth dimension amongst their grandchildren too friends, they struggled together to address my mom’s decreasing powerfulness to walk, talk, too eat. In the concluding vi months of her life, they spent several chiliad dollars per calendar month on nursing abode care.

“HD is to a greater extent than than a disease,” I wrote equally my heartbroken manlike mortal nurture precipitously lost his ain cognitive abilities inward the wake of my mother’s death. “It is a destroyer of families.”

One matter I fearfulness most almost the inevitable onslaught of my ain hard disk drive is that it could set my household unit of measurement into a similar fiscal bind. Both my married adult woman too I run full-time, too my salary currently accounts for to a greater extent than than one-half of our income.

“What if I larn disabled earlier my immature adult woman finishes college?” I oft inquire myself. “What if my married adult woman must run many extra years to compensate for my lost income? What if I larn a burden to my family?”

Happy to hold out busy

News reports almost the needy at Thanksgiving remind me of the troubling backdrop to the holiday: the anemic acre of our economy.

As a local radio report noted yesterday, “food postage stamp cuts that took lawsuit this calendar month volition brand Thanksgiving fifty-fifty harder for low-income San Diegans. A typical Thanksgiving repast volition toll the average household unit of measurement nearly $50 this year, which is far beyond attain for the nearly half-million people inward San Diego County who larn by every 24-hour interval to set nutrient on the tabular array — especially the 270,000 people who depend on nutrient stamps for meals.”

So this Thanksgiving I am grateful that I tin work, assist back upwards the household (including our daughter’s private schoolhouse tuition), too relieve for the future. I’ve also enjoyed the introduce amongst household unit of measurement vacations too abode improvements such equally my only remodeled abode office, which replaced a rickety too ugly setup persisting from my days equally a frugal graduate pupil too starting assistant professor.

This year, I’m thankful for the wellness that has allowed me to receive got a highly productive yr at the University of San Diego, where I am wrapping upwards my 5th calendar yr equally subdivision chair. It’s been especially busy equally my colleagues too I search to attain amount an exciting novel seat inward the history of science, technology, too medicine.

With the gift of beingness asymptomatic, I’ve also maintained the measuring of my hard disk drive advocacy, amongst major trips to Iowa inward August too to the World Congress on Huntington’s Disease inward Rio de Janeiro inward September. Until today I’ve written 26 weblog articles this year, my second-highest annual output since starting At Risk for Huntington’s Disease inward 2005.

This is article No. 27, written amongst a deep feel of gratitude for the gift of life, family, too wellness – too the promise of effective treatments too a ameliorate time to come for the entire Huntington’s community.

Share this post