Showing posts from May, 2017

A Primer on Huntington's Disease

This is the first in a series of blog posts about Huntington's Disease, and the effect a diagnosis - or fear of a diagnosis - has on families.  This first post gives a brief overview of the disease, and insight into how devastating HD is on the individual and family.

What did you inherit from your parents?  Do you have a prominent chin, or maybe a nose that seems to cover half of your face?   Have you ever been told you look just like one of your parents, or that you have the same laugh as your grandfather?
Inherited traits are a link to your family’s past and present.   Trying to connect the present and the past is a million dollar industry with websites that help users find ancestors and DNA testing that can be used to develop a family tree going beyond links in documents or the faded memory of an older generation.
For some, however, these DNA links can confirm stories of mysteriou…

And Now...

Nearly a year ago, we lost our son.  We had him for such a little while.  Our journey as a family was wild and unpredictable.  We rode that roller coaster in white-knuckled terror.  Every day brought new challenges and adventures.

When Lacy was diagnosed with Huntington's Disease, we knew our whirlwind journey would have an end, and not one we had hoped for.  We prayed for mercy and endurance, and for God's grace as we braced for that last steep climb and the inevitable race pellmell back where we started.

I watch other families grow and nurture their little ones, and I am grateful for what we had, and the joy Lacy brought us.  Our lives weren't easy, but they were full of lessons and revelations.  Even now, I realize new truths as I think about the 33 years with Lacy.

I take great comfort in knowing that God had a plan for Lacy before he was born.  My sadness is eased by knowing that our family was fashioned by God, and that He knew before we came together what the outc…

Huntington's Disease Awareness Part 4

It had been six weeks since blood tests had been ordered to test for genetic markers for Huntington's Disease.  Lacy, Kenny, and I sat in a neurologist's exam room.  We'd met with Dr. Alan Diamond to get the blood test order, and now we waited for him to tell us what the test revealed.

I'll never forget the image of Lacy leaning forward to listen to the doctor.  He loved going to the doctor, and was always interested in what his physicians had to say.  His face was so open and relaxed, he looked so young and innocent.

We said hello, and the computer keys made clicking sounds as Dr. Diamond's fingers opened Lacy's virtual file.  He didn't sugar coat the news.  "The test is positive for HD.CAGof 49."

In that moment I looked at Lacy and saw him calmly listening to Dr. Diamond.  He did not know - and never understood - that what was said that day changed everything for him and for us.

Within five years, Lacy would lose the ability to walk, bathe and…

Awareness of Huntington's Disease Part 3

Five years after Lacy's seizure, we had moved to Northwest Arkansas.  When we'd first moved, we had been able to get him into a group home, but his behavior again became a problem.  In addition to the stealing he was now refusing to shower or change his clothes.  We often had to drive over to make sure he got into the shower, and it took a lot of convincing.  He was argumentative and difficult.

After all the progress he had made as a young adult, it seemed Lacy was losing ground in so many ways.  No longer interested in doing his laundry, or working in the sheltered workshop he had once enjoyed, Lacy spent his days pacing up and down in a cafeteria, looking at a clock every few minutes to keep up to date on the time.

Kenny and I wanted to find a better fit for Lacy, and just when we wondered where we would turn, we found LifeStyles in Fayetteville.  We applied to have Lacy accepted to the program, and we were thrilled when he was accepted.  Since there wasn't room in the …

Aware of Huntington's Disease: Part 2

For years we explained Tourette Syndrome to Lacy's teachers and caregivers.  Lacy was always the extreme example of behavioral and neurological symptoms.  Lots of tics, lots of troubling behaviors and difficulty getting through school.  We did it, though, and Lacy graduated from high school in 1995.

Not long after graduation, we moved Lacy to a group home about 2 hours from where we lived.  While it was initially a gut-wrenching decision, the change we saw in our son was incredible.  He blossomed as part of a community of his peers, and he began to develop his own ideas and preferences from food to fashion.  We were excited to see Lacy grow so confident.  After a couple of years, we were able to move him to a group home just a few miles from home.

By this time, Lacy was in his early 20s, and his behavior became more of a problem.  He began stealing from residents, and having outbursts of anger.  He perseverated on ideas and things.  We worked with his group home to find ways to …

Aware of Huntington's Disease: Part 1

When we adopted our son, he came to us with his own challenges and strengths.  He also came with a family history of Huntington's Disease.

Thus began our family's awareness of HD.  We knew very little; it was rare, it was inherited.  Beyond that, we didn't not know much.  We asked medical professionals if we should have Lacy tested for HD when he was about 5 years old, but the answers were unanimously opposed to taking this step.  Since there was no treatment, and no cure, there was no reason to burden our son with that knowledge.

What we know now is that although somewhat rare, HD is actually much more prevalent than once thought.  While only about 30,000 people in the United States exhibit symptoms of HD, there are hundreds of thousands of family members living at risk for developing Huntington's Disease.  And many more worldwide.  Many doctors have never see anyone with HD, and have no idea how this genetic disease affects the body and mind.  Finding someone famil…

Huntington's Disease Awareness Month

May is Huntington's Disease Awareness month.  It is so ironic that Lacy passed away in May of last year - toward the end of the month.

There is not a day that goes by when we don't think about HD and how it has impacted our family.

How sad that we don't have our sweet son, how sad that so many families must say a slow goodbye to their loved ones.  While there are some clinical trials going on that are promising as far as a cure for this disease, there is still not a happy ending in the foreseeable future for those who have developed symptoms of HD.

I am planning to post several times this month to recount our experiences as a family living with HD, and the inspiring people we have met who struggle every day with symptoms, or who care for loved ones who are gene positive.

I want to remember the remarkable person that our son, Lacy, was and how he touched so many people in his short time on this earth.  I want to express my thankfulness to God for giving us this young man…