Hi.

This isn't a how-to. I'm not a pinterest mom. I'm a firm believer in faking it 'til you make it. This is for all the millennials out there who secretly have no idea what they're doing. I'm looking at you, millennial caregivers. 

My First "Check In"

I went to the HD doctor yesterday for my first yearly check in. The visit was fairly short as I'm most likely years away from being symptomatic but they did routine tests for my balance, memory and a few other cognitive signs that are usually the first to be affected. They also asked me extensively about my  family history and my mom's symptoms. As expected, I'm 100% normal at this point.  It felt good to go, meet the doctor and have a baseline appointment. When you find out that you're gene positive, it's hard not to question if the disease is creeping in early. As I've said before, it's learning how to separate the disease from everyday life. I have to learn not to think "HD" every time I drop something or forget a name.  I think going to a doctor and reinforcing that I'm still "normal" really helps. 

Honestly, the waiting room in the neurology center is the scariest part. I'm always the youngest person in there by far. And, because I'm pre-symptomatic, going into the center makes me thank my lucky stars that I'm in the position I am. It could be much worse. Much, much worse. 

The doctor asked me if I would want to know when she starts seeing symptoms present in me. Of course I said yes. She said that some people don't want to know and want to keep living their lives obliviously. I'd rather have everyone be upfront with me if and when the time comes. I get so mad that my mom is still in a state of denial about her symptoms. Or maybe she's simply unaware. Either way, it's difficult to tackle issues when she can't accept that there are issues in the first place. 

The other thing that the doctor told me is that they are working on getting a focus group together in December for people like me who have tested positive for the HD gene, but are pre-symptomatic. I hope that comes to fruition. I think it would benefit me to meet someone else in my shoes. Someone else who knows how awful the waiting was and someone who knows how badly I need a cure. 

I'm also at the top of the list for any pre-symptomatic trials that come through. I can't wait to get a phone call to be involved. It's really difficult sitting around and waiting for a cure. I wish I could do more but I'm no scientist. 

As long as I continue to be involved in the HD community and have yearly check ins, I think the fear of HD will become more manageable. The more information I have, the better. 

Happy 5774!

Probe Update 1