Still Coping with my Test Results a Year Later

Submitted by Marsha Miller Ph.D. on Tue, 04/12/2011

smiling sara

I had known since I was a kid that Grandma had had HD, and that I had a 25% chance of getting it, but felt that as long as my Mom was healthy, we were all safe. I never worried about it until the day that someone outside my family said "Do you think your Mom might have what your Grandma had?". I instantly realized they were right, and from that day I could not get it out of my head.

Besides worrying about Mom's health, the 50/50 chance that I would have this hit me like a ton of bricks. I hit the internet hard, and found lots of info that only cemented my conclusion that Mom must have it, plus I found out about genetic testing and some of the clinical trials & studies going on.

I had no doubt that I needed to get that genetic test, then decide what further action to take. By the time I researched a testing place, saved the money, and got on the wait list it was 5 months. I couldn't stand the waiting, but besides giving me time to see how sure I was, it did also give me time to get all my insurance in order. I figured I had a 50% chance of being negative and feeling so much better. But that if I were positive I would take that OK too, somehow. I wanted to get my own results behind me, whatever they were, so I could focus better on Mom. Plus if I were positive, I wanted to participate in whatever trials/studies were available, take any supplements that are suspected to help, and live life to the fullest.

My husband supported testing as being MY decision, but I could tell he did NOT want to know. Still, what was I to do? I was obsessing anway; may as well rip the band-aid off, and see what's underneath, then let the true healing begin if needed.

Still, since I do not have symptoms (besides a little tendency to obsess - which anyone can have), we WERE a little surprised that it was positive. We got the news on a Friday, and hadn't slept well leading up to it, but sleeping that weekend was even worse. I really wished I would have gotten a prescription for stress-relief/sleeping, but I would have a glass of wine before bed instead. I added NyQuil the night before my results, which I only share as ammunition for others to ask for something safer than NyQuil + wine.

After the results, I worried how differently my husband would look at me, knowing I had the gene, and he'd likely eventually be my care-taker. I started to wonder how we could modify our house for wheelchair accessibility. I wondered if we'd gotten ENOUGH insurance, and read all the fine print. I started thinking about what instructions to leave as an Advanced Care Directive. I had a constant pit in my stomach for 1-2 weeks, just dreading the future. (And again, no meds, also no followup call from my testing center). I went to work but was really not mentally there. I had only told my husband and 3 of our closest friends in addition to the lighthouse forum, but you can only talk about it so much, anyway.

I tried to find enjoyable distractions. We started making wine at home. Thankfully it was springtime, so I started some seeds for my garden, and spent time outside when it was nice enough. I did further research and ordered my supplements. I found a study to sign up for. I've always been a runner, but running was now really helping with my stress, plus I had the additional motivation knowing it creates BDNF which protects your brain.

I forced myself to visit my Mom - because I realized I would want someone to do that for me. But I went without my husband most of the time, not wanting him to see her and think that's going to be me someday (bad enough that I was thinking that).

We had also recently found a church to join, after really not going for years. I threw myself into volunteer projects, including some that put me around others who were certainly worse off than myself (had immediate health issues + financial issues). Now I manage some of those projects a) because I like helping people; b) because I CAN; and c) never hurts to have good deeds under your belt.

A friend of mine was getting married, across the country; invitations came right after my test. I had just gone to visit the previous year and it would have been financially smart to stay home from the wedding. But I'd told myself I was going to live life to the fullest so I went - and was so glad that I did!

I also find myself making more effort to go along with any fun suggestions that my husband or friends have. Not being careless with money, but prioritizing a fun experience like a concert, over some new clothes.

I do come to the HD lighthouse to keep up with research/people's experiences, and I think about HD multiple times/day. I still often get that pit in my stomach even though I really do think there's a lot of hope for treatments/virtual-cure that will drastically change what it means to have HD - soon!

The testing process was by far the most stressful thing I've ever been through, and the fresh positive result was even worse. It was probably about 2 months before my stress level was back to the pre-testing-process level (still high). I guess it is significantly lower today, over a year later; but it's taken a lot of effort to get here. I AM back to living life, trying to live it to the fullest. And I count my blessings, including the 30+ years I was able to not worry about HD, and everything I am able to enjoy today.

HD is not coming for me tomorrow. I may have 5 "good" years or 65, or somewhere in between. HD may be cured before it significantly affects my health. Anything else could end my life on any given day. So I'm making sure that my life includes people and activities that I enjoy, and hopefully also leaves some good effect on others.

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