Showing posts with label aricept. Show all posts
Showing posts with label aricept. Show all posts

Wednesday, March 14, 2012

In The Moment!

As many of you know i have also fought my disease of alcoholism.  The program i joined taguht me to live one day at a time. Taking things as they came and dealing with them without the use of my friend Jonhn Barleycorn. Now I have a disease, Alzheimer's and Frontal Temporal Dementia, which have robbed me of those memories that i was told to keep green, so I would remember my life with JB and the hell that i lived in. Those days and other memories good and bad are all becoming only words to me. They are starting not to carry the pain, joy, saddness, hapiness , etc of my past. Alzheimer's has now forced me to live in only the minute, not even the day, I can do something at 8am and by 8:30am it is gone, not even a memory only a few words exist about it. This is becomming more and more my life. Living only in the moment. I guess that is how we are reallly to live, but this is new and confussing to me. It is about 7pm here and I cannot tell you what I did an hour ago.This fuckin disease really robs you of things and it is taking more faster and faster. But I still have ½ brain cell that refuses to give up, so I can tell you of this journey at least for the moment.

Take care of yourselves.

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

Saturday, December 24, 2011

Happy Holidays are Ringing and Calling You!

short note I am sill alive, wishing you and yours a Very Merry Christmas and a Happy New Year.  We were up north in Petaluma, Ca visiting our other daughter, son in law and 4 grandkids as a xmas surprise. I am back home where I am safe. Getting turned around more and more these days. It is amazing to me how quickly one can forget something, just in seconds. This bothers me, because I always remembered things, well forgot what i wanted to say. Take cae=re of yourselves.

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

PS thanks for the post contribution Carol. I am aware of the Doctor.

Friday, October 14, 2011

My Disease, Alzheimer's is relentless!

I hvae not written lately because I have not been able to.  To this point i have only really suffered some of the affects mentallly of the disease and the physical has gotten worse. Back brace, a scootter chair now, tremors higher dosages of meds for pain and to keep me somewhat calm. Now i ned the wrife to help me use the remote of all fricken things. I still sit at the dinner table and am not sure what I am doing, i am getting lost more and more in conversations. Hell i am starting to gorget to turn this thing on let alone post.

I keep getting sites from people tat want posted on here, but i have to read them and ask Lynn if they fit, i owe that to you my family. Some I have just forgotten this is not a sales site, with once acception MY BOOK. then the money is doneated. I am lucky these days that I can stay awake for part of the day, i just drift and that is that for hours. I am getting to know less and less where I am and actually what I am doing.
Guess it is true some of us stay mentally ok until we start to reach the end of this disease. Then all of a sudden down the hill lickety split and it is over. Not only have most of those in the documentary Memory the loss tapes left us, but a number of those is the other parts that were featured with Alzheimer's have passed since the release in 2009 I think it was. Still I hear no voices for us, only those inside my head now, but they have interesting things to say and they agree with me msot of the time, sometimes they get out of hand.

Till next time you take care of your selves.

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

Thursday, September 1, 2011

Yes It Is ALZHEIMER'S AWARENESS MONTH!

That means that i expect all of you to make people aware of us.  If need be take an Alzheimer's suffer out and about so people can see our faces and that we are REAL people. As much as you mya thnik many people still do not know about us, the disease yes, the faces no hide them away.

I have a challenge for all of you. GET MY BOOK FREE, just pay shipping and hanlding hell it is even signed, except the digital copy. After the cost of mailing the rest goes to Alzheimer's Disease Reseaarch Foundation. I get nothing, even on the sales my royalties go to them. You reall want to help well here is an eay way. You can even give the book to friends to view and follow. Only have about 5 hard backs, about 75 siftcovers, but can sen ou a hell of alot of digital copies. Yes I am assking for you to put you money to wor.  This book cost me thousands of dollars to get published, i never expected to get rich or my money back, let alone sell more than 2 or 3 books. Well giving them away and my royallties will never pay for the printing, have sold more than 3 though. Those in other countries i still charge what is on the list, although it cost not only the shipping you pay, but double thatn. So you money does not get donated since i go in th whole on it. But the message gets out and that is what my blog and book are all about.

Remember us this month, it is Our Time To Be Known!!!!

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

Friday, August 26, 2011

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

Saturday, July 12, 2008

From Memory Walk to Memory Talk

“I want to go to the Memory Walk because I’m having trouble with my memory,” Jim said. He had spotted a small ad about the upcoming walk in the Sedalia Democrat. I hadn’t mentioned the walk but had already registered and raised $400. I thought Jim wouldn’t want to go because it was for Alzheimer’s.

When the doctor told Jim he had probable Alzheimer’s, Jim’s reaction was, “I guarantee you, I do NOT have THAT!” I didn’t want to believe it either, but what began as memory glitches had developed into gaping deficits. By Memory Walk time, Jim was on Aricept, but it made him sick and he resented taking an Alzheimer’s drug.

We arrived at Liberty Park, expecting a crowd of walkers. We joined Helen and Chuck from Slater, Penny and Joetta from the Mid-Missouri Chapter, and Penny’s German shepherd, Vicky, beneath the small shelter.

Helen, an energetic, vivacious 70ish woman had organized the walk because the Association couldn’t find anyone in Sedalia to do it. She toted a hunter’s horn, and was raring to go.

We received tee-shirts, sweatshirts, caps, cups, and water bottles. I donned my purple tee-shirt, but Jim insisted on wearing his cowboy hat and denim shirt. We waited. Walk time arrived, and no one else showed up.

Our small group headed toward the downtown area. Helen blew her horn, and we collected donations from the few people we met on the street and most of the downtown businesses. It was hot, and Jim began to sweat, but he was a real trouper and wanted to continue the walk. Helen swooped into the VFW Hall on Ohio Street. The veterans asked her to blow her hunter’s horn, and the sound bugled throughout the building.

Jim collected the largest donation of the day from Wilken’s Music Store, where he was a regular customer. He was excited about people giving us contributions and with no concept of the value of money, pocket change was just as exciting to him as ten-dollar bills. In all, the Sedalia Walk earned about $600 that year

The Mid-Missouri Chapter asked me to organize the 1999 walk. I had never been involved in community service, and this was a giant step for me. The Sedalia Memory Walks were successful initially due to family support. Eventually the walk was embraced by our entire community. My passion carried me through five years as coordinator. Our six walkers mushroomed into 444 walkers who contributed $36,000.

The decision to become the Memory Walk Coordinator changed my life. Throughout Jim’s illness, being an Alzheimer’s Association volunteer gave me a sense of purpose and became my lifeline. The Mid-Missouri Chapter staff and Board gave me a Kleenex to dry my eyes and inspired me on my life’s greatest mission. Over the past ten years, I’ve been a primary caregiver, a support group facilitator, an Alzheimer’s Board Member and Assembly Delegate, a spokesperson, and active advocate for people with Alzheimer’s and their families.

I’m not telling you these things so you will think I’m a giving person; I have received so much more than I’ve ever given. Jim developing early onset dementia was my life’s greatest heartbreak, but this tragedy gave birth to my greatest blessings.

Being an Alzheimer’s volunteer, I’ve met amazing people, made life-long friends, and had opportunities I never dreamed could be possible. I share my experiences through Memory Talk presentations and book projects. I see sunshine breaking through the giant shadow of Alzheimer’s.

Every journey begins with one step, so make sure your step is in the right direction. May you walk the Memory Walk and talk the Memory Talk to make the world better for the 5.2 million Americans with Alzheimer’s.


*****
To find a Memory Walk near you, call your local Alzheimer’s Association Chapter or visit http://www.alz.org/ and click on your state on the map. You don’t have to be an athlete. Our top fundraiser for years called all her friends and never left her home. If you prefer email, the Alzheimer’s Association’s Kintera makes fundraising easy.

For information on Memory Talk presentations, visit http://www.lsfisher.com/, and click on the Alzheimer's Speaker link. Alzheimer's Anthology of Unconditional Love available at Barnesandnoble.com, Amazon.com, and selected Missouri Barnes and Noble stores.