APDA New England Regional Symposium

So P & I went to this conference on Monday. It was ok. Not really what we expected but it was interesting enough. The conference on the whole was geared towards the older PD patient. We found that we already knew most of the information that was being presented.

The first speaker was very interesting. He spoke of the non-motor symptoms of PD. I found that fascinating. It spoke to a lot of the symptoms I have. He noted the difference between being fatigued and being sleepy. I hadn't realized the difference until then. Before my CPAP machine and my sleep apnea diagnosis, I was sleepy all the time. What I feel now is fatigue. I just have a complete lack of energy a few hours after I take my meds. The unfortunate thing he said was that there really isn't much they can do for fatigue. (Story of my life!).

He also talked about people acting out their dreams. He said sometimes this predated the diagnosis and the onset of other symptoms. I found this interesting because P had told me for years that I talk in my sleep & yell and thrash...etc. I've stopped since I got my CPAP machine.

Other than that, the rest of the conference was stuff we already knew.

It was an eye opening experience to see all the different stages of PD represented. There were people like me who only had slight symptoms and then there were those who were in wheelchair's and those who were very dyskenegic.

I asked P on the ride home if he thinks it is a bad thing that I don't really think about "what's to come". He told me no. He said it's good to live in the moment. Plus, we really don't know what will happen down the line.

I think I have accepted that I have PD and that I live with it fairly well. I just really haven't wrapped my head around the fact that it is slowly robbing me of my independence. God willing, that day is still far, far off. It just concerns me that my symptoms seem to have progressed so much in the past two year. I don't know...maybe they haven't really...Maybe it's just my perception.

I keep thinking that there has to be a way for me to be the way I use to be. But, that will never happen. I will never get back the "me" I want to be. At least body wise. That is still a hard pill to swallow.

I just try to keep my head up and make the best of it. I am lucky to have such a loving and supportive husband and family.

One day at a time.

Toodles!