Not such a good blogger

I guess that blogging is not really my style, maybe I'm the wrong generation and not used to having the unidentified public know what's going on in my life on a regular basis. I don't care to know what others are doing "right now" or what they've had for dinner and I assume that they don't really want to know those details about me either. My usual response, not a very kind one I admit, about those people who fill up my facebook pages is that they must not have enough to do with their time if they can find so much of it to waste. OK, so maybe I'm defending my not so stellar record of keeping this blog up to date. After all, here it is almost the end of April and I've yet to mention the fact that April is Parkinson's Disease awareness month and that even the US Congress has passed a resolution to that effect. Not to mention that my home state of Virginia has had the very same resolution on its books for a few years now.

The international symbol of PD is the red tulip and April is a perfect month for finding locally grown and beautiful tulips to give to someone you love who has been affected by PD. Or, check out the PAN website for donations to the virtual tulip garden . Or, take each member of your support group a red tulip. I took several bunches to a local conference and gave each attendee a stem before they left.

I recently heard a local social worker give a talk to the care givers of PD patients and her comments and suggestions were valid and helpful; she cautioned against the effects of stress and the need to take care of oneself to avoid burnout. But, as she spoke I realized that the patient needs the same support and guidance, especially in the earlier stages when s/he is very slowly changing and becoming a person who needs more care. It is so difficult to accept that one's capabilities are not what they used to be, to strike a balance between doing too much just to prove that you still can and giving up by refusing to raise the bar. how much is too much, how much is too little? How do we graciously accept assistance and how do we ask for it when it is not offered? How do we avoid feeling like a burden to our loved ones? How do we continue to pull our weight in a relationship and in our families? How do we ask our children to help us when they are used to coming to us for help? How to let them know we are changing without frightening them?

I am in a hotel room and cannot sleep, probably but not necessarily due to the cup of coffee I had late in the afternoon. I was afraid that I would not be able to make it through my meeting though I knew it was risky and that I might not sleep. No sleep was preferable to nodding off at the speakers table in full view of a roomful of scientific journal editors. I am happy to report that I survived without a yawn or my head hitting the table. However I am now wide awake and it is almost 1 am.

Happy April! Spread those tulips around.