I just celebrated my 61st birthday! It doesn't sound old to me, for some reason -- probably because I work with people in their 80's and 90's and 100's. They make it easy to feel young!
Coming out of the closet two years ago, when I started keeping this blog, has been accomplished gradually. At first, the blog itself was hidden (by me), and I just shared it with a few people. The latest setting that I have makes it "google-able," and that is a bit frightening to me! I have also started calling myself a "Huntington's Disease Activist" on Twitter and LinkedIn. In order to keep my part time job, I had to reveal my status to my employer, but at that time it was a secret.
Why did I keep it a secret for so long? One big reason is that my husband, who is an insurance man, thought I shouldn't tell anyone. In addition, when I was applying for jobs, I didn't share my status, because my biggest fear was that "people wouldn't take me seriously." I also did it for my daughters, so that they wouldn't have to face discrimination in the job market. And, of course, each of them may decide to be tested at some point in the future. I also tried to protect my untested brother, who happens to share my last name. Now that I am coming out of the closet times ten, the names of my loved ones may be more easily found in relation to Huntington's Disease. That's a chance I am afraid to take, but I will.
This is definitely a great time for me to become an activist for Huntington's Disease. Many important clinical trials are getting underway, including gene silencing trials, which I learned about from the many Facebook HD groups that I have joined. In order to learn more about participation in clinical trials, I called my neurologist a few weeks ago. It's easy to put off visits to the doctor, especially since, at this age, becoming symptomatic for Huntington's Disease is a real possibility. So, when I called to schedule an appointment, I learned that it has been two years since my last examination. That's a long time to claim I'm pre-symptomatic.
My husband accompanied me to my appointment, and I was surprised by his lack of knowledge about HD and me; in particular, he didn't even know my CAG count (which is 42). When I got tested eleven years ago, I did it on the sly, and I think he has pretty much been in denial for many years. This time the doctor did a complete neurological exam, mostly for the benefit of the five residents, nurses, social worker who were crowded into the little examination room. Happily, I passed with flying colors, and will be starting a couple of clinical trials in a few months. So, I will stay out of the closet (for the time being).
Coming out of the closet two years ago, when I started keeping this blog, has been accomplished gradually. At first, the blog itself was hidden (by me), and I just shared it with a few people. The latest setting that I have makes it "google-able," and that is a bit frightening to me! I have also started calling myself a "Huntington's Disease Activist" on Twitter and LinkedIn. In order to keep my part time job, I had to reveal my status to my employer, but at that time it was a secret.
Why did I keep it a secret for so long? One big reason is that my husband, who is an insurance man, thought I shouldn't tell anyone. In addition, when I was applying for jobs, I didn't share my status, because my biggest fear was that "people wouldn't take me seriously." I also did it for my daughters, so that they wouldn't have to face discrimination in the job market. And, of course, each of them may decide to be tested at some point in the future. I also tried to protect my untested brother, who happens to share my last name. Now that I am coming out of the closet times ten, the names of my loved ones may be more easily found in relation to Huntington's Disease. That's a chance I am afraid to take, but I will.
This is definitely a great time for me to become an activist for Huntington's Disease. Many important clinical trials are getting underway, including gene silencing trials, which I learned about from the many Facebook HD groups that I have joined. In order to learn more about participation in clinical trials, I called my neurologist a few weeks ago. It's easy to put off visits to the doctor, especially since, at this age, becoming symptomatic for Huntington's Disease is a real possibility. So, when I called to schedule an appointment, I learned that it has been two years since my last examination. That's a long time to claim I'm pre-symptomatic.
My husband accompanied me to my appointment, and I was surprised by his lack of knowledge about HD and me; in particular, he didn't even know my CAG count (which is 42). When I got tested eleven years ago, I did it on the sly, and I think he has pretty much been in denial for many years. This time the doctor did a complete neurological exam, mostly for the benefit of the five residents, nurses, social worker who were crowded into the little examination room. Happily, I passed with flying colors, and will be starting a couple of clinical trials in a few months. So, I will stay out of the closet (for the time being).
No comments:
Post a Comment