National Advocacy Forum
Well I got back late Wednesday evening (4/25/2012) from the National Advocacy Forum for the Alzheimer's Association. I wouldn't miss it as long as I have the opportunity to go. It does take a lot out of me though, I always feel totally exhausted for at least a couple of days afterwards. It is well worth it though, anything I can do to help in the struggle to bring more awareness to the epidemic of Alzheimer's and similar diseases I will do as long as I am capable of doing it. This time around was perhaps much more challenging than others because I had endoscopic sinus surgery the Wednesday before the forum so just 4 days before I had to fly to DC. I had continual problems with my sinus while there, trouble clearing my ears during and after flights and lots of headaches. Those of us that suffer from one of these diseases have much less reserve than a non affected person has so when we have any other health problem going on it makes the impact much stronger on us than the average person. I never understood why my father would get so sick when he got what seemed to be a simple cold. Now I understand fully. He was not a hypochondriac as my mother thought, he was confused about what was happening to him and grasped at many of the wrong things while doctors never even considered the disease process going on with him. The forum seemed to be a very rewarding and successful experience. The follow up is what is important and I have to do better with setting reminders to write or contact the congressional delegation that we visited in district. That is what really counts and is a major reason for success with a senator in 2010. You have to hold them accountable for either what they promise you or for giving you a solid answer. I told one congressman who I told my whole story to in 2010 when asked how I was doing, I said well I just concentrate on what I can still do and remember that each day is the best it is ever going to get so enjoy. This is of course very hard in practice at times because you have days where you don't feel so great so it doesn't seem like as good as it is going to get. But actually since the disease is continually progressing it has more affect on me every day, sometimes I feel or experience reminders of that but often I don't. I am lucky that the progression is much slower than a lot of people but I can't afford to let me think the days are any less precious because of that. Well, time to make myself rest a bit.
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