So I know I said I would do daily posts and it’s been awhile, but it has been a hectic month for me with birthdays and special occasions, travel plans and doctors appointments, so I hope you can find it in your hearts to forgive my absence. That said, I also wasn’t certain what to write about this time. The more topics we discuss, the more personal this gets for me, and the harder it becomes to say what I want to say. So, let’s start with an easy topic! 

The fundraiser that we had at Ledo’s Pizza in Maryland was a success! We raised over $200 for HD and there is talk of making it a regular monthly event.       More than 50 people contributed to the fundraiser last month! Many of them were familiar with HD but a number were not, so awareness was certainly raised; it was a win in my book. We had a fun night and supported our cause – the best of both worlds! I want to thank everyone who came to the event and supported the cause, as well as my parents, my nephew, and my sister who were instrumental to the success of the fundraiser. More events are in the works, so stay tuned!

Aside from that, life has been moving on. I have set a date to get tested for HD, something that I am terrified of but must do for my own sanity. I will keep you posted on how that goes. I have heard some of the mental tests that they do, and honestly, before my mom was diagnosed I probably wouldn’t have been able to do some of them. We will see how it goes. My mom is part of a study for new medication that might stop her symptoms where they are now. She is being part of the test group to help get research closer to a cure for others who may develop HD. I think she is very brave and I admire her very much for her calm attitude and selfless actions. Especially since she is afraid of blood and the first two days of the study they took a ton of blood.  I am also not excited about the taking of blood because I hate needles. I saw a video of the needle that is used during an epidural and I nearly passed out. I don’t mind blood, but the needles are 100% not okay with me. I am looking forward to getting some answers and being better able to plan for the future for myself and my children. If I have HD, I will try to become part of the study that my mom is a part of. I will also make sure that I start taking the medication that helps with movements as early as possible, so that I will be able to enjoy a better quality of life for a longer period of time. These are all the things I think about when I am awake at 2 and 3 in the morning: wondering what the future holds.