3/4/06 In Washington, DC 3/4/06 Thru 3/9/06

I am leaving for Washington, DC in a couple of hours. I will be meeting with our Florida senators and representatives working on behalf of the working people of America. I work to garner their support of legislation on issues important to those of us not in the top 1% tax cut percentile--like us folks who have to go to work everyday. My union sends me every year and I take this job on with fervor and with much thought and prayer because it's our elected officials who decides matters of importance to us. Did you know that in the state of Florida, the employer with the largest percentage of employees receiving state aid is Wal-Mart? The cost of their health care is so expensive that it's prohibitive so they are on Medicaid. This is shameful in the United States of America. Gordon

3/3/06 One Day At A Time

This Morning's CD: Secret Garden Today was a great day. I got up reminding myself to take one day at a time. Work went well. When I got home I was doing some research on Early Onset Alzheimer's research. I ran across a Feb. 16, 2006 NewsDay article which cited recent Columbia University research on the subject. The gist of the article was that educated people or folks with high IQ's develop Early Onset Alzheimer's Disease but it's not diagnosed until it's pretty far along due to their brain being able to compensate for the cognitive deficit. This wasn't what I wanted to hear. I had to call my doctor today about some lab work and while I had him on the phone I had asked him if he has ANY idea how long it would be before I totally lose all my marbles. Well, I didn't put it EXACTLY that way, but you know what I mean. He explained that nobody has been able to tell me that because nobody knows because everybody is different and the disease works different in different people. I didn't let the Columbia study upset me at all. I've read several different studies. And you know what? My doctor is right. None of the studies show the same thing. Some of them show NO difference in early onset symptomology and non-early onset as far as rate of decline goes. So it's a matter of enjoying each day, taking one day at a time and working my program: puzzles, brain exercises, keeping up my activities with friends, intellectual stimulation and positive thinking. Larry and me went to a lecture series tonight. The topic was Comparative Islamic Fundamentalism. We learned the history of Islam going back a couple of thousand years. Those are the kinds of things I'm going to keep engaging in to help keep my mind sharp. Well, I need to sign off for now. I will be in Washington, DC for a week. Gordon

3/2/06 Frustrations, Stress & AD Resources

This Morning's CD: The Platters Greatest Hits Getting words mixed up or your mind going blank in the middle of a sentence can be embarrassing. It can cause a lot of stress in the work place. Today was a good day as far as speaking goes it was a trouble free day. But not all days are like that and I worry about it getting worse. I also worry about taking on another task my boss wants me to do which involves facilitating groups. Making a fool out of myself is not something I look forward to. Other than that it was an okay day. Another thing that happened today is I finished the crossword puzzle I started last Sunday. It took 5 days to do it, spending 30 minutes a day on it, but I got it done and didn't cheat either! It's a great brain exercise and I'm going to keep doing them. Knowing where to turn for information for patients,friends,family and care givers is important. Here are some great and informative sites I found on the web. But if you get confused looking at studies and get 15 different answers to your questions don't be surprised. Having early onset AD, I want to know about how long I can expect to function at the level I'm at now. The truth of the matter is that nobody knows. Different research studies have yielded different results and no two brains or individuals are alike. Everybody is different. Yes, it's maddening, but taking one day at a time is important. I try not to project into the future and also find diversionary activities effective. Anyway, here are I few resources I have found useful over the past week: https://www.alz.washington.edu/NONMEMBER/researchlinks.html http://www.alzsefc.org/ www.alzcare.org/ http://www.alzfdn.org/services/index.shtml Alzheimer's Foundation Hotline: 1-800-866-8484 Gordon

Uncle Doug 3/1/06

Today's CD: Favorite Hymns: Gaither Gospel Series I was tired much of the day. I've been on the Aricept for a week now. Maybe it's kicked in and causing drowsiness. I perked up at lunch with my co-workers as we discussed current events or whatever came to mind. I called my uncle at a nursing home in Ohio today. He has Alzheimer's. He's a WW II veteran and a great guy. He sounded perplexed and I wasn't really sure that he remembered me but he said he did. He appeared to get his relationships to his family members confused. But I'm glad I called him and told him I cared about him. At the end of the conversation he said, "I remember you, Gordie." Because he had spontaneously remembered my family given nickname, I realized that he indeed knew who he was talking to.

2/28/06 Gordon's Journey Mission Statement and Today's Journal Entry

Today's CD: Luminesence/Salvation Army Regent Hall Band,Oxford Circle,London The purpose of my blog is to express through journaling, my thoughts and feelings as I deal with Alzheimer's disease and face the multiple issues that go with this diagnosis. It is an expression of my thoughts and feelings on that particular day and whatever challenging experience or issue faced and how I deal with it. Please share with a friend,spouse,family member,partner or health care worker dealing with Alzheimer's Disease. Feel free to share with health care workers working with Alzheimer's clients. Please note that this blog is non-partisan. However, it is impossible to separate health care issues from politics. I support candidates and legislation that cares about humanity, who promote policies consistent with how a civil society treats it's citizens. I believe that a civil society is a democracy which supports people of all racial, ethnic,sexual and economic status. Therefore when dealing with horrible diseases like AIDS, Spinal Cord injuries, Alzheimers, ALS, etc, I support candidates who support embryonic stem cell research and not destroying those precious cells. I support candidates who do not give tax cuts to the richest 1% of our population, but rather have an equitable tax system which gives everyone an equal tax break and provides enough federal revenue to provide health care to all Americans.

Monday 2/27/06 Worries and Frustrations

This morning's CD: Alleluia Sing/Coventry Cathedral I had a nice day at work; helped several clients and felt relaxed and peaceful most of the day. The only exception was when I took my afternoon break. I started having negative thoughts and worrying about what the future may bring. I asked myself,"will I have to go to an assisted living facility or nursing home at some point in the future?" and, "I wonder how long I'll be able to work? What do I do if I can't function at work and have to leave my job? How will I pay my bills until social security kicks in? Will medicare or medicaid help me?" And so it went. It's not like our current administration or elected officials in DC are serious about solving our insurance,health care and medicare problems. I have endured much frustration dealing with my insurance company. The medical benefits outlined in my benefits book are sometimes paid and sometimes not. The rules seem to change frequently not yearly as has always been the case in the past. Due to the moral deficit of our current administration, I think maybe our medical care is being skewed to favor the medical corporate lobbyists. Unfortunately, some good folks end up dead as a result for the contempt for human life by our current president and his administration. But a little later and after talking with a friend, I was through worrying about these things, finished my tasks at work and had a nice drive home. Gordon

Sunday, 2/26/06: Persistence

A friend from work, Keith, encourages me to practice persistence. It's easy to try something once or twice and give up. It's easy to get frustrated when we try to do something once or twice and fail. So my goal for today was to reflect on persistence and ways that applies to my own life. Yesterday morning I couldn't remember if I took my first morning pill or not. I had got up, walked into the kitchen, turned on the coffee maker and after that there was a time warp between the Coffee maker and going to the living room to decide which CD I wanted to listen to on my wireless headphones. I decided on "Hymns of Grace," a wonderful CD from Grace Episcopal Cathedral in San Francisco. At that point I wondered if I took my stomach medication. I had no recollection. So I counted the pills out which were in the bottle which was an easy task as it was a new bottle and yep, there were 30 in it which meant I hadn't taken it. It was off to CVS later in the day to pick up a weekly pill container with each day''s dosages clearly marked out by time. Now that seems easy enough and I was initially glad I got all the pills for the week in the right compartment. Not so fast, I thought about an hour later while watching TV. I KNEW something was wrong with the the way I put the pills in the box. Back to the kitchen I went and discovered that number 1, the first pill of the morning was put in with the rest of the pills for later in the morning and number 2, two of my medications didn't get put in at all! Persistence. I took a deep breath, refused to get frustrated and told Larry, "I really screwed this up," and promptly did it all over again and it was done right. I could have just given up or asked him to set the meds up for me. But that's giving up and it's persistence which keeps our brains working. It was great to be in church this morning and enjoy the fellowship and hugs from my church friends, commune with God and enjoy the music. No frustrating experiences this day and my pills are all set up for a week! More of my journey: I left Ohio and went to college in Bethany, Oklahoma where I received a BA degree in English and education. I also went to LPN school in El Reno, Oklahoma and then worked at St. Anthony Hospital in Oklahoma City from 1975-1978 on an inpatient psychiatric unit moved to Houston, TX in 1978 and worked at the Texas Medical Center in the nursing Dep't at Methodist Hospital and then back to work on inpatient psychiatry at St. Joseph's Hospital in downtown Houston, Harris County Psychiatric Center, the Texas Dep't of Criminal Justice and then the Houston VA Medical Center. In 1987 I was working out at the gym after getting off work one afternoon and met Larry. We've been together now for 18 years. In November of 1994 I transferred to the West Palm Beach VAMC via a short loan to the Miami VA due to construction delays at West Palm Beach. I like the weather in Florida, but hate hurricane season and like many Floridians, start to get nervous when hurricane season approaches. We still have damage to the house from Hurricanes Frances and Wilma which haven't been fixed yet. I've decided to try not to worry about this coming hurricane season, but take each day as it comes. Gordon