Alzheimer's - Who Am I Now?

The last week or so has been less than wonderful, in fact I have lost most of it, every time i turnned around i was waking up. Yesterday was the worse of them all. I got a real look into the future so to say. I was not doing well mentally and as I went downstatirs I think in the morning some time i just stopped on the landing. I recall someone telling me to come down offf the statirs. i think I remained their for I am not sure how long. I know i was not sure where I was or who was talking to me and trembling, I think that is why i would not move. because i was to unstable. I got downstairs and wet to the refrigerator to get some soda to drink. This lady was talking to me and asking me how I was and all that type of shit. Finally I asked her who the fuck she was. I think she said your wife Lynn, I just looked at her and nothing. I wondered why she was in my house. I left the kitchen and went and sat down. I rememger being told what day it was by more than one person and that I seemed out of it. Finally I recognized Lynn. But the rest of the day was really messed up until late evening.

So now for the time being I have some knowing of what things are going to really be like first hand. Physically i am having more and more trouble moving.  My conversation with others is getting more difficult and less, oh what the hell, speakable cannot think of the right wording. That is becoming harder, finding the words that fit we play guessing games with me as to what I am trying to say, i guess i am refining my language, joenese, to a more pure form, which I do not undersstand.

Until next time be good to yourselves.

God Bless & Keep You & This Country of Ours!
joe

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Me and My Friend Alzheimer's.

Of late some of you have yelled at me in emails and comments. Apparantely my fire has gone somewhat. Well you are right. I hate ths fucking disease. Alzheimer's is robbing me of who I was, i am constantly lost is a maze in my brain.  Lost in conversations, seems this is my only way of real contact. I walk like a drunken sailor, my hands and feet hurt, my body trembles, i cannot see very well anymore. I try to keep a sense of humor but it is becoming more difficult.

You all have a feeling of my thoughts towards the Alzheimer's Organization, well Mr. Robert Egge, VP of Public Policy wrote me and i am sure others to watch howdy doodies State of the Union for his push for NAPA and Alzheimer's because Obama cares deeply abouth this. WELL gues what not a word or a whisper or passing comment about it. Got another email from Egge stating disappointment but to wait for the buget and how we may shine.  These people have no clue, we with Alzheimer's are not important to this government and society at large.  I mean i get all these emails about this vitamin this herb and even coconut oil to help retartd the damange and help. Horse feathers, this shit may work for a very, very, very few for a short time 6 mos to two years and then they hit a brick wall. No more functionality, quaks go away. ALZ a cure by 2025 not on a hot day in the summer. Idiots do not even know what causes it. Loook up the studies, tey all contradict one another. I will say it agin, WE HOLD THE KEY, come to us for the answers, get the hell out of your little square boxes and see the reality.

People say Joe you are wrong, the prove it to me, show me the one person that has been cured or givn 5 to 6 more years of life because of the so called wonder drugs and herbs, etc. All my friends that have taken this crap have deterorated and even died in the 8 year time line. In 3 short years the seven of us is the Memory The Loss Tapes and 2 in the Caregiver Part of HBO Documentary The Alzheimer's Project, only TWO of us are alive today.

Yes my life sucks just like the others with this disease. I want it over, i know what still lies ahead and it ain't the golden years. Yes more people are speaking out, but they have money and prestige on careers so they are important. The people in the know say there are over 5.4 million of us in the US, According to the American Health Assitance Foundation approx. over 500,000 will join us in 2011. Well now I bet there are over7-8 million in this country in this world of mine. All those that are hidden and not talked about shoved into the darkness because this still is widely seen as mental illiness rather than the disease that it is. I know organizations are getting out the word. We do you people unite into one voice and let it be heard through out the land?

God Bless & Keep You & This Country of Our!
joe

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The Remember Song

Before i give the link to this song, I want to answer Dana's question. First no question that i am assked on this blog is to personal. I have nothing to hide and wish to share all that i have. I do not take Aricept, Namenda, or Exlon (or whaterver it is called) nore the other two drugs for Alzheimer's and other forms of dementia. See I wrote all this dow so I could do this post and not use my ½ brain cell.  I did use the A&N drugs, however I got worse on them and suffered other sided affects, the nuerolgist that I went to, the best in California, told me to flush them and go on and enjooye the rest of the time I had left. So I did. 2 other neurolgists feel the same. I know some folks say they help, my issue is do they really or do theose at least some that take them think they do because that is what they were told. Read the comple pharm reports on them and you will see that they are not sure if they will work. The only medical advice if any that you will get here is talk to your doctor and make them talk with you not at you it is your body and your life. So there!
Anyone no matter were they live in the wolrd can order my book on my side for the shippping only price. Yes Karen it costs more than 6.95 for me to ship out of the states, but that is my contribution to get the word out. Besides a paid a bundle to publish it, rich i will not get, my purpose is only to share this World with others.l

Now for the link which has the credits for the song:
The Greatest Alzheimer's Song Ever!
I hope you find the humor and truth in this song. By the way I about fell out of my chair listening to it.

God Bless & Keep You & This County of Ours!
joe

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Alzheimer's, Sleep Apnea, Early Onset Alzheimer's and Medications!

Yes I have Alzheimer's and Sleep Apnea seems to go with it. I was first diagnosed back in the mid 1990s, remember the old times. Had my test again, well now what took place, well went for my findingss or whatever want to call them, appiontment was for 10:30AM as usual had the normal 15 min. delay, that turned to 30 mins. at whch time the wifey got involved as to what was going on, well 45 min after my appt. time taken back had blood pressure, which was rissing, taken and my wieght. Seated right in front of the Dr. office and told it would be about 2 mins. and I was next. Well, he comes out and takes in three people who needed an interpeter ahead on me.  Now you all know the high esteeenm i hold the medical field in, so you can guess what took place, the Dr. was told directly what I thought and so was his entire staff and all the patients heard, you know i hold nothing back. Well with contrite voice and approach the ass called me later in the day and was so apppologitic that I wanted to vomit. I still gave him no respect or quarter. Apparently my SA is not very bad, so time will tell on the front.

Early Onset Alzheimer's diagnosis is a MYTH it does not exist people. Only if they tell you 10 or so years before. One of our family members (part of this family on the blog), husband was diagnosed with EOA from reading her blog and things it seems to me to be about a year ago.  He is now in mid stage, gee from EOA to mid stage in 1 to 2 years no way. We are generally diagnosed in mid stage, because the HealthCare providers do not want to TAG us as one of THOSE people. But if you have cancer, aids, heart disease, herpes, well yeah we can tell you normal folks get those diseases.What I am trying to say in the stage play here, is we are still not to be talked about and I see and hear it all the time.  Everything is to help the caregiver, Time To Listen To Us, we hold the key let us give it to you. Are we not people, do we not cry, do we not feel pain, do we not feel the frustrations of loosing our memories and control over our bodies? Bet your sweet ass we do and are.

I take 80mg of Fluoxetine (prozac) a day to handle my mood shifts and anger, also take 20mg of Crestor to manage my cholesterol ( diet and exercise has never worked, liver is to efficient at producing this little bugger), 300mg of Gambapentin (Neroutin) to manage moods, seizures and the neropathy that I have so I can walk and feel in my hands, take .5mg of Cholozapam (Kolonipin) twice daily to help with my St. Vidas Dance, the tremors and shakes probably will be increased because it helps with sleep temmors and REM Behavoral Disorder.

None of the so called slow the process drugs, sorry tried no help and most people I know have gotten no real benefit from them. Have hadt tow reallly top neurologists say no to them because they have not seen them help anyone in their practices. You know the drugs, Aricept, Namenda, Exerol and the rest. I have written I believe in past posts about these drugs.

Well this is a lot for me, I feel like I am preaching, probably I am and it is to the choir, no one that counts is listening, you all know this is not directed at you.

God Bless & Keep You & This Country Of Ours!
joe

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