Health Care (again!) and Other Musings

This Morning's CD: Andrea Bocelli, "Sacred Arias: Medicare: One of my friend's at work is pulling his hair out trying to help his mom through the Medicare maze. President Bush says it's a great plan for our nation's seniors. Senior drug company officials? Anyway, some folks say that our president is real, that he speaks to them. This is indeed good news because health care and the Medicare drug plan is a big deal to our seniors in Florida and I'm looking for somebody who can explain our president's explanation of the plan which he explained during a town meeting back in December. I don't understand it. Someone please explain what he means. Bush Explains Medicare Drug Bill -- Verbatim Quote Submitted on 2005-12-13 16:35:14 WOMAN IN AUDIENCE: "I don't really understand. How is the new plan going to fix the problem?" Verbatim response ~ PRESIDENT BUSH: " Because the -- all which is on the table begins to address the big cost drivers. For example, how benefits are calculated, for example, is on the table. Whether or not benefits rise based upon wage increases or price increases. There's a series of parts of the formula that are being considered. And when you couple th! at, those different cost drivers, affecting those -- changing those with personal accounts, the idea is to get what has been promised more likely to be -- or closer delivered to that has been promised. Does that make any sense to you? It's kind of muddled. Look, there's a series of things that cause the -- like, for example, benefits are calculated based upon the increase of wages, as opposed to the increase of prices. Some have suggested that we calculate -- the benefits will rise based upon inflation, supposed to wage increases. There is a reform that would help solve the red if that were put into effect. In other words, how fast benefits grow, how fast the promised benefits grow, if those -- if that growth is affected, it will help on the red." Other Stuff: Well, about the time I thought my body was adjusting to the Aricept and my GI problems ceased a few days ago I started on the row of the 10mg dose of Aricept. I did fine day #1 and day #2. On day #2 the Phizer Nurse calls and told me that it's good that the GI problems stopped and maybe I'm tolerating the 10mg okay. Day #3 on the 10mg the GI problems started all over again. It settled down yesterday morning and no problems in the past 24 hours. So we'll see what happens. I will not quit taking it due to the fact that there are negative consequences to stopping Aricept. That will be a last resort. I'm considering taking the bull by the horns and getting some 21st Century, cutting edge health care not available to me here. I think I want to go to Houston to the Texas Medical Center to have an opinion done by the Baylor Neurologists at the Neurosensory Center where I worked when I first moved to Houston in 1978. If I decide I want to do this it might turn into another fight with Blue Cross/Blue Shield, but maybe not. Tomorrow, friends are coming down from Port St. Lucie to meet Larry and me for breakfast and then go on to the Gay Pride Parade and Festival in Lake Worth. I hope my stomach cooperates.

21 March, 2006 Tangles and Plaques: Taking a Break!

This morning's CD:"Chorus of Voices: Powerful Inspirational Choral Classics" Available on British Airways, the world's favorite airline. Picture Above: The Duke and Duchess of course! I took a break from Alzheimer's research over the weekend. For right now I know everything I want to know about tangles, plaques, neurons, dendrites and statistics. Saturday night we went out to eat and to a movie with the Duke and Duchess, our dear friends. The movie was "Mrs. Henderson Presents." It was excellent. But then EVERYTHING Dame Judy Dench has ever been in has been excellent." I was actually feeling under the weather with GI upset for about a week. I hope it's not a medication side effect. I've got my fingers crossed as it seems to be improved over the past 24 hours. But for right now I'm taking a temporary break from learning about medical stuff and thinking about fun things to do. I've been missing Texas and England lately. I'll get something going as far as a trip goes. Meanwhile, I still have to earn a living and better sign off for now and get ready for work. Gordon

16 March, 2006 THE SEASON'S OF LIFE

This Morning's

CD: "In These Times"

Peter, Paul & Mary

Today work went well. No problems and I felt relaxed. Was thinking about the things I need to get done while my memory is still fairly good. I shared yesterday about the legal, financial and all of those things that need to be done. But today's thoughts were more on a personal, heart level. Things like finding old pictures, getting out the album my sister sent me with old family photos and deciding what ones are really important to preserve and get to CVS for resizing and placement on CD roms.

I did a lot of reminiscing about growing up in Cleveland. How I hated the cold! My mom had the idea that it was healthy for kids to be outside....Winter included. My excitement of snow always wore off pretty quick and was happy to exit the snow fort and get back in the house. It's funny because I don't mind the cold so much when I've been to England or up north during the winter as an adult. I guess it's because I know it's temporary so I just dress accordingly, have a great time no matter what the weather and enjoy the warmth of Florida all the more when I get back home. And that's how I try to look at my Alzheimer's diagnosis. I still enjoy my life, enjoy my co-workers and folks at church, enjoy doing things with Larry and getting to Tom's Barbecue as often as possible. Going through old pictures and reflecting on the great experiences I've had in life. The Alzheimer's Disease is only an outward season. But inside is the warm season of a fun life worth living to the fullest.

Gordon

15 March, 2006 One Day At A Time--Again!

This morning's CD: "Hymns Through the Centuries Vol II" Washington National Cathedral Picture: Rose Window above balcony Washington National Cathedral This afternoon Larry and I went for our appointment with our Family Nurse Consultant at Alzheimer's Community Care. Her name is Jo Ellen and what a wonderful lady! We received tons of information and homework assignments regarding legal and financial arrangements; all of the important things I need to take care of before losing important cognizant functions. We also learned about a great wellness and memory program at Florida Atlantic University. Jo Ellen patiently answered a ton of questions, administer the MMSE (mini mental status exam) and although we we dealing with a very serious disease process, there were also smiles and humor during our time together. My MMSE was up a point! I'm also on a waiting list for a early onset AD group. During the converation, I became acutely aware that I was asking the same question in several different ways about something impossible for Jo Ellen or any expert in the field to answer: "How long will I be able to function at a high level, go to work everyday and live independently?" The fact is that Alzheimer's is a very complicated disease which progresses slowly, yet at different rates for different folks and manifests different symptomology from patient to patient. Nobody can answer the question because nobody knows the answer. Jo Ellen stressed the importance of taking one day at a time and living each day at its fullest. This is something I again realize that I have to reinforce daily. And with God's help and my wonderful support systems at work and church and my relationship with Larry, I'm going to do just that: keep reminding myself daily to relax, take one day at a time and savor each moment as it comes. Gordon

11 March, 2006: Spirituality, Faith and Religion

Pictures: Shield of The Episcopal Church USA, Bishop Leo Frade,Bishop of the Episcopal Diocese of Southeast Florida Bishop V. Gene Robinson, Bishop of the Episcopal Diocese of New Hampshire, our denomination's first openly gay bishop. This morning's CD: Wynton Marsalis "Standard Time Vol. 3 The Resolution of Romance" I've been thinking a lot lately about my personal spirituality, beliefs and God. Everybody's spiritual journey is unique and deeply personal. My experiences with God have been deep and profound. Having been diagnosed with early onset Alzheimer's disease is not news any of us would be thrilled to receive. But to me, the concept of Jesus hold my hand and going with me on this journey brings comfort and peace not torment and despair. And in moments of uncertainty, anxious thoughts will creep into my head but it only takes a reminder of my knowledge of God being with me on this journey, a passage of scripture or a phrase from a hymn or prayer which quickly jolts me back to my belief in a loving God who cares about me and isn't leaving me to go through this adventure alone. Included in this faith journey is a wonderful family of support. A family of like believers whom I choose to congregate with, share my faith and communion with: The Episcopal Church. Having come into the Episcopal church from a non-liturgical background, people sometimes wonder how I got from there to here. I'll try to explain. In the Anglican Communion, of which the Episcopal Church is a part, I discovered an expression of spirituality shaped by certain elements of consciousness and the spirituality of scripture along with a five hundred year history of worship with the Book of Common Prayer. In my faith journey as an Anglican, I've found a tradition that encourages the cultivation of inner spiritual growth, a life inside of me that believes in a direct encounter and knowledge of God that is experienced in the heart, in my activities of daily living, in my work, rest and play. It's a experience of love and joy, of mystery and continual growth. Episcopalians love liturgy and I'm no exception. We are also independent thinkers and tend to be intuitive. This is no coincidence. When the Church of England broke with Rome and the English Reformation occured, elements of Celtic mysticism couldn't help but have an influence on early Anglicans. Some evangelicals have a problem with the word "mysticism. The truth be told, evangelicals believe in mysticism as well. It's the mystery of faith, the inability to explain every little detail of God while experiencing the infinite nearness of our creator and his love for us. Anglicans celebrate worship through our Book of Common Prayer. It's Scripture that is prayed, chanted, read, paraphrased and sung. Episcopalians are immersed in Scripture without stressing memorization or literal interpretations which have been fought over, written about endlessly and has caused more strive amongst Christians for centuries. Anglicans look at the Bible as a WHOLE, we tend to get involved in the complete story and history and thus formulates our fluid spiritual believe system. Communion, or Holy Eucharist is important to Anglicans. It's being in shared communion with one another and with God and that's why we take Communion routinely as a part of our worship experience. I hope my readers don't think I am suggesting that people of other denominations do not have deep experiences with God. Because I know that folks of all faiths do. My faith is important to ME and heightens my ability to hear and experience the voice of God and brings me great joy. Gordon

3/10/06 Issue in Washington, DC: Health Care

This Morning's CD: Favorite Hymns From Westminster Abbey My co-worker and me had a successful trip meeting with our elected officials in DC. Among the worker rights issues we discussed is one I want to share with my readers: health care and the need for insurance reform. The burden on employee payroll deductions for our health insurance continues to grow and the burden on the employer continues to shrink. In addition, insurance companies are placing more restrictions on our coverage and one of the major changes to further the burden on the employee is our president's proposal to add a third category of Blue Cross/Blue Shield insurance coverage. It's called MSA's, or Medical Saving Account. Now the medical savings accounts as we know them have been great. They have been used to help cover, glasses, hearing aids or other things not covered by insurance or medical care not covered by insurance. But the proposal for this new plan is that the employee will have a much lower contribution to pay toward their insurance coverage and the contribution will go into the MSA and that money used BEFORE their insurance kicks in. Therefore, say an employee wants to save money by reducing his insurance payroll deduction in December. In January the employee has a health care emergency and ends up in the hospital. If the employee signed up for $3,000 MSA, the medical bills amounting to $3,000 must be paid by the employee before BC/BS kicks in. Using the example above, remember, it's only January and the employee has only $50 in the MSA. "Too bad", the corporate insurance lobbyists say, "cough up the $3000 or die." If this plan is successful with BC/BS we will see more and more insurance companies implementing similar plans. If the Medicare prescription plan hasn't been bad enough on America's seniors and the disabled, this only adds more icing on the Bush administration's corporate whore's cake! Health Care IS a Moral Value! That's all for today. Gordon

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

Diagnosis: Early Onset Alzheimer's Disease: My First Entry: Saturday 2/25/06

It's been three days since I was diagnosed with early onset alzheimer's disease. It's been an emotional ride and has made me reflect on my life and the beginnings of my journey. My journey began when I was born in Cleveland, Ohio in 1951. It took a long time for me to realize that my particular journey in life was going to include alzheimer's disease. I think I first became aware that something was wrong in 2000. That's when I first noticed having difficulty with reading. Reading had always been a big part of my life. Since childhood I never turned out the light to go to sleep without reading at least several pages. But in 2000 I began having difficulty remembering the paragraph I had just read. I would find my self constantly going back and re-reading trying to remember what the paragraph said. It got to the point where it was taking me a year to finish a book. During the past year or so, I'd find my brain going blank sometimes in the middle of a sentence or having difficulty with words. After mutilple tests over the course of several months, I was finally diagnosed three days ago with EOAD (Early Onset Alzheimer's Disease) which is the diagnosis given for those diagnosed under the age of 65. My neurologist prescribed Aricept during this visit. I still go about my daily life and work. Keeping a journal is something I think will be beneficial to me and I hope to others who find their way to my blog. I've never done one before and this shall be a part of my adventure. Gordon