Where To, Bud?

This will be the second installment of my own responses to questions posed to a group of Early (Young) Onset Alzheimer patients during 4 live and one virtual town hall meetings in August of 2008. Kris Bakowski was one of the attendees of this event and kindly sent along a summary report which you can read at http://www.alz.org/national/documents/report_townhall.pdf . Response: "Healthcare professionals need to take us more seriously and most of all listen to our questions and concerns........treat us as if we were their mother, father, sister or brother." Those of you following this blog know that I am in the healthcare field and so have a little more grasp of the terminology, signs and symptoms of AD, but I am also a patient, so much of what my neurologist is telling me I am hearing for the first time. I do, however, have a very good relationship with Dr. K, and I am (guardedly) looking forward (Damn! That still doesn't sound right) to the 72-hour EEG and the Neuro-P...

It shouldn't happen, but it does - you meet someone, you connect and discuss things you have in common, you establish a bond - and then for one reason or another you "delete" them with the touch of a key from your life! During the "dark" period of my life, I somehow convinced myself that no one I knew gave a shit about me, so why keep them around? This included people I met on the net and on various "bulletin boards" who became "virtual" but at the same time, "real" friends. Real enough so that I would remember their birthdays, at Christmas. etc. etc. For some reason, they fell short of the "standards" I had set for them, and so......BYE! Then came this . And now I see that all the people I sent away are the people I need most in my life and now I want them back. I am the worst kind of hypocrite there could ever be: Not one who uses words only, but one who also HURTS by rejecting, and I don't know how to deal with that...

This is the report Kris sent me which I had planned to use as part of my series of entries on Alzheimer's In The Workplace, but every bit of it is so important that I'd like for you to read the whole thing in its entirety rather than me quoting from it, so here's the link: http://www.alz.org/national/documents/report_townhall.pdf One thing that will shock you is what I alluded to in a previous blog entry: There are currently 5.2 million people in the US alone with Alzheimer's, and by mid-century that figure is expected to increase to 16 million. Those figures come from The Alzheimer's Association's report 2008 Alzheimer's Disease Facts and Figures. Half of those are people under the age of 65, diagnosed with "Early Onset" (soon to be called "Young Onset") Alzheimer's. That's us "baby boomers", folks. What that means is that AD is no longer an "old person's" disease, and those of us in the work force righ...

The "anger" is me , boys and girls. The "hurt" is those around me who don't understand the anger and how much I hate myself for getting this shitty disease and I hate myself even more when I whine about it. I try to "swallow it down", but sometimes I feel so helpless when I don't have the desire to do anything that used to give me pleasure that the people who are close to me bear the brunt of it all, and believe it is a personal attack, and while it may sound that way, it's the anger that comes with the 5 Stages of Grief which Elisabeth Kübler-Ross wrote about in her book On Death and Dying that is the problem. I am on two kinds of anti-depressants along with the AD meds, and I have been on the anti-depressants before I even knew I may have EOAD. I got on them because I had anger issues before, yes, but I also got on them to save a relationship that was fast going down the drain. Unfortunately, it takes two to tango and person number two ju...

Ever since my lumbar puncture, I have periodically had a very stiff neck and a very bad headache, and so now I am wondering if something went wrong when my Neuro guy punctured my spine? Today, I have to move my whole body to see side to side, and I am SOOOOO tired of this and the headaches. I ALMOST had the desire to get on the bike and ride a few miles today, but not like this. All I have strength for today is just nothing. I need some TLC. I need my Mel. I miss her. Love Y'all Thanks for bein' here. Bill