My Book

If you wish to see sites it can be purchased at both written and electronic go to:

http://LivingWithAlzhiemers.wordpress.com

You can also leave a review of the book should you have purchased it.

God Bless,
Joe

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Here is hoping that you all had a wonderful day yesterday and stayed safe. As for me I helped to expand my stature in life, I ate.

I had an interview with a journalist sometime this week that is doing a two part piece in the local paper here on me. I guess she was promted by my post of Who Speaks For Us. We discussed my anger in the posting and she cam to understand that I was not against boobs, but the fact that there really is very little media about us. We talked about how we are throw aways. I also expressed my disappointment in the Alz Org for not being more media concious. Walks are great, working quietly with lawmakers to get things moving is nice, but without hard media coverage does not help that much. NOTICE we now have a pill that will help about 70% of those who take it not to get AIDS, is that not nice for those that want same sex and needle sharing.  From about 1983 or so till now we are stopping these folks from dieing (which is great), only 25+ years to help them, of course that was media push and political movement.

But here I stand with over 5.3 million (very low estimate) with AD, and we are THE WALKING DEAD!!!! like it or not that is the plain raw simple truth, known since 1906 well what do we have, meds that may slow things for a short time then down the hill you go. Yes we with dementia are B movie actors, Zombies of the World, Night of the Walking Dead, etc. Yes I am pissed. I will stay that way and continue with your help to get us a VOICE that will not be Silenced.

Each day that butcher in my brain takes more of me, not thin tiny slices anymore but it has widened the blade and the slices arre gettting thicker. I st5umble more, lost in conversations most of the time, sit and my brain goes off somewher and leaves the body here just fixed. I believe that I am starting to have ciesures not the roll on the ground type but where my mind just flakes. It is getting harder to post, the things come to my head, but get lost before I can write them and I sit here trying to figure out why I am at the computer and just get up and walk away.Everyday living is becoming a task, simple crap just is major, the fun is leaving. I now no the rages of this disease and the loss of who people really are.
My once strong strength to concentrate so I could talk is weaking quickly and I can be pulled off subject in a second and not be able to return. Right now, I am alone and the house is quiet, so I can talk to all of you, but it has taken since about 6 this morning to put this together. This blog has become me and I guess my crusade to awaken people that we do exist and that they very well may join us shortlly unless there is such an out cry that people move, THIS IS NOT AN OLD PEOPLES DISEASE, there are those that were born the same year as me that are a cpl of years dead now from AD. I am onl 66 now, stat wise about 2-4 yeras before I get the hell out of here.

Take care of yourselves and be good to each other.

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

PS that goes for all those on this planet.

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Who Really Speaks For Us?

Since i went to the memmory walk here, 1st one in Oceanside, CA, which had 600 walkers so they say, the question of "Who Really Speaks For Us?"  Has been runnning in my head. I listened to all the speakers and the walkers, cheering for a cure, what about the cause people? I heard how everyone was helping to care for us and the rest. But NO ONE spoke for me or the others in my world.  Where is our Voice. Certainly not with the major companies, major sports or even really the fricken media. Try as I may I cound not find anythin in our local paper The North County Times about it. But the, and you may not like this but tuff, The BOOB walk on sunday drew media and papers.  It is I think as I have felt we are throw aways. Fix them boobs, which deaths have been droping on, and I do not wish it on any woman or man (we get it to Ladies), but we have no, I repeat we have NO SURVIVORS' , THAT IS RIGHT NOT ONE! Again, WHERE IS OUR VOICE?

I am ready for the bull mail to come take your best shot at me. I can dish it out and I can take it back. But if you are going to get on my ass, do it publicly with a comment. I put out publicly and am not afraid.

I for one who suffers with this bastard of a disease, am really getting tired of everyone saying we are going forward, but yet I do not see us on the boob tube rarely. Where are the causes? Where are the cures? Where is there real working drugs?  I once offered and now I offer again a CHALLENGE to any so called researcher out there my brain to use living samples from, not mice, not dead brain material, although that may be debatable in my case, to use. I know I have been told it may leave me worse off, more demented and I may die, DAH, wath the hell is going to happen anyways.


Until my next tirade or what ever, be good to your selfs.

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

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Thanks To You All

This is to say thank you. My book has gone to print today and should be available at least electronically in 48 hours we hope.  It is Titled:
                                           Living with Alzhiemers'
                                          (A Conversation If You Will)

So titled because you all have played a part in it. Whether is sells 1 copy or not is not what counts to me, the fact that it has beens something I wanted to do and Thanks to All of You, it has come about. When I get the location for you to look and decide I will post it, quickly if I remember. Lynn will probably beat me until I do.

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

PS> Thanks Dr. Sivak for your support. To the young lady from Paris who wrote me this morning, I do not know how many visitors from France have been from Paris. I send to you & your fellow country men a big Hug from us here in the USA.

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Par Boiled Fanny

Yes yours truly master of home repairs and as dense as a tree was at it again today. One needs to know that me and ladders do not belong in the same universe, I get on one and by the time I reach the second step on it I am 30 pounds lighter. Today we started on clean the outside of the house, redoing the pation and th driveway. Well do to my immense brain power I got on the roof to wash down the roof and upstairs portion of the house.  Well sitting on the roof was a bit on the hot side. Did you know that when you spray down a roof that the sun has been beating down on the water turns to steam, well I do now. As this small river came rushing down the roof towards my secure spot, it reached my butt, yess my backside, and it cooked it. I felt like I was sitting ing boiling water, guess what DAH i was. I am fighting this disease the best I can, but the longer we go down the road, the more I find out what I do not know that I thought I knew, before I found out that I did not have the first idea about it.

Lately when I get up I am not able to finish crossing that bridge from sleep to being fully awake. I was talking with my ologist this week and he asked if I felt like I was is a fog.  Well the answer is yes, the above is proof of that.Things are just not clear to me any more and I stop more in the middle of things then I did before and wind up doing something else. Each day I decide to write on here and say I should write things down before I post so I remeber what it is that I want to say. GREAT IDEA, problem is I sit down to do it and forget what it was I was going to do, welcome to dreamland.

Well I need to stand right now so you all be good to yourselves and THANK You for helping me win the new award posted on our blog. This is your victory as well.

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

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Today I am not clear ast to what i want to say. It is becoming difficult for me to keeep my thoughts in order, as if they ever were. I am becoming more distant from my family, I feel very trapped by everything. We went to the Birch Aquarium, I think it is called, in San Diego on Friday, it was fun, but to tell the truth I was not really part of being there, although the lady at the sharks was interesting, but you know my wife, she would not let me bring her home. I am having more diffficulties with talking to, seems to come out sideways, good thing those around me have a clue to what I am saying, because I don't. I have been watching and noticing all the things now that they say will slow down your getting AD and all the things that cause it. It just leads me to believe even more so that these people are morons and have no idea what they are doing. In most cases giving people false hope and bullshit answers. Kind of sounds like are President and Congress. What the hell most of them went to the same schools anyhow. Well I am rambling, getting good at this. Also have changed the site again and probably will still more, gives me something to do and screw up at the same time. Well bye for now.

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

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A Call For Volunteers!!!!!!

Hello,

I hope you all had a great holiday weekend! I wanted to get in touch to let you know about an Alzheimer's Disease research study and invite you to share this with Living With Alzheimer's blog readers.

Have you or a loved one ever experienced what it is like to be unable to recall things which were once so simple to remember? If so, you may know how devastating the effects of Alzheimer’s disease (AD) can be. An estimated 5.3 million people in the United States have Alzheimer’s, and every 70 seconds another person develops this disease! I am contacting you today on behalf of the Alzheimer’s Disease Cooperative Study (ADCS)  to raise awareness about AD and to encourage otherwise healthy adults with early complaints of memory problems to participate in the Alzheimer’s Disease Neuroimaging Initiative Grand Opportunity (ADNI GO). ADNI GO will build on the unprecedented momentum and success of the Alzheimer’s Disease Neuroimaging Initiative (ADNI), a landmark study to find more sensitive and accurate methods to detect AD at earlier stages and track its progress through biomarkers.

By being able to recognize changes in the brain, scientists hope to treat memory loss and other symptoms of AD before they appear, but the only way to recognize what these changes are and learn more about who is at risk is through the participation of volunteers. “We cannot end this terrible disease unless we know more about it,” says Dr. Paul Aisen, M.D., director of the Alzheimer’s Disease Cooperative Study (ADCS). “That is where the amazing volunteers, their friends and their families can make the difference in our success.”

Dr. Maya Angelou - the eminent poet, author, educator, historian and professor at Wake Forest University - is working with researchers to ask you and your loved ones to be part of the ADNI GO study that may help bring us one step closer to finding a cure. Click here to hear from Dr. Maya Angelou.

If you, a friend, or a family member is experiencing early signs of memory loss, you may be eligible to participate in this groundbreaking ADNI GO study. Please visit http://adcs.org/Studies/ImagineADNI.aspx or call the Alzheimer’s Disease Education and Referral Center at 1-800-438-4380 for more information on study sites in your area. I invite you to share this information with your blog readers to help shed light on this devastating disease, and encourage participation in ADNI GO.

Thank you for your time and please feel free to get in touch with any questions.

Sincerely,

Diana

 

Diana Bakowski

i-Blitz Interactive - Powered by WestGlen

1430 Broadway, New York, NY 10018

dbakowski@westglen.com

212.704.9134

 

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