Living with Alzhiemers'

Me and My Friend Alzheimer's.

noreply@blogger.com (Joseph Potocny) — Sat, 28 Jan 2012 10:29:02 PST

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

NAPA's War on Dementia Aims to Cure Alzheimer's by 2025 | Dementia & Alzheimer's Weekly

noreply@blogger.com (Joseph Potocny) — Mon, 23 Jan 2012 15:19:09 PST

NAPA's War on Dementia Aims to Cure Alzheimer's by 2025 | Dementia & Alzheimer's Weekly:

'via Blog this'

Clinical Trial Results of Dimebon Are Disappointing

noreply@blogger.com (Joseph Potocny) — Mon, 23 Jan 2012 15:16:39 PST

Clinical Trial Results of Dimebon Are Disappointing:

'via Blog this'

the tests go on.

God Bless,

Joe

Alzheimer's Association : Email - Federal Update on Alzheimer's

noreply@blogger.com (Joseph Potocny) — Thu, 19 Jan 2012 13:28:55 PST

Alzheimer's Association : Email - Federal Update on Alzheimer's:

'via Blog this'

more on the ongoing plan for Alzheimer's Disease. Problem i find with plan, is those with Alzheimer's have no say nor were we asked. So much for the forgotten.

God Bless,

Joe

U.S. launches national war on Alzheimer's - USATODAY.com

noreply@blogger.com (Joseph Potocny) — Wed, 18 Jan 2012 19:02:45 PST

U.S. launches national war on Alzheimer's - USATODAY.com:

'via Blog this'

Good article, does cover some of the same facts and figures beigh tossed around, but the cause is starting to be heard finally.

God Bless,

Joe

The Remember Song

noreply@blogger.com (Joseph Potocny) — Fri, 06 Jan 2012 12:05:39 PST

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

Rescuing Wanderers: GPS Shoes, Helicopters & Infra-Red Cameras | Dementia & Alzheimer's Weekly

noreply@blogger.com (Joseph Potocny) — Mon, 02 Jan 2012 13:25:52 PST

Rescuing Wanderers: GPS Shoes, Helicopters & Infra-Red Cameras | Dementia & Alzheimer's Weekly:

'via Blog this'

to start the New Year, interesting stuff, some nice hellp.

God Bless,

Joe

Strangers in the Midst.

noreply@blogger.com (Joseph Potocny) — Fri, 30 Dec 2011 14:46:10 PST

I have done my veyt best to fight this disease with all the mental strenght that I have had. I have allowed it to take its tolll on me physically because my mind was more important and is who anaad what I am. Well itt has marched on and I have not, it is to the point I look at those in my house and wonder who they are. I know I sould know them but I do not. I pretend to be in touch but well Mr. Alzheimer's has taken over and made him serlf at home. I rarely hear from any friends or see them, I hardly hear from any of you anylonger. There once was a time the commentss and emails were difficult to keep up with, now the emptiness of that is setting in. I know everyoe has their proble,s and life to live, but the anger that this disease hels to raise, while not really justified, it happens and and this world of mine has grown smaller, colder, darker and emptier and really not worth being here, I pray and even beg to be taken, but it is in his time. I have nothing more to offer or give and do not know why i am here.
Well i am loooosing my train of thought so take care of yourselves.

God Bless & Keep You & This Country of Ours! (Amd je Rest pf upi as We;;)
joe

Happy Holidays are Ringing and Calling You!

noreply@blogger.com (Joseph Potocny) — Sat, 24 Dec 2011 10:03:46 PST

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.

Insights for Another Gentleman Suffering With Alzheimer's

noreply@blogger.com (NewKidontheBlogg) — Wed, 14 Dec 2011 03:30:47 PST

Very few people write about the experience of Alzheimer's as Joe does here. My friend, also a caregiver, loaned me one such book, Alzheimer's from the Inside Out by Richard Taylor. Dr. Taylor tells it like it is as does Joe. Here are some quotes from his book:

The fact is, most experts spend more time talking to and listening to caregivers than they do talking to and listening to those of us with dementia. pp. 30, 31
Everyday, every hour, every few minutes, I lose my train of thought. . . . Conversations pass me by as I struggle to keep up, keep on track, and stay in the game. p 65
Can I successfully live in a world where I am missing larger and larger chunks of what is going on around me? p. 69
Time does not mean much to me now. I do not know and seldom care if it is Monday or Wednesday or Sunday. p. 119
I am not a child. Even if sometimes I act like one, check me out--I AM NOT A CHILD! . . . there are times when I want to figure things out for myself. pp. 190, 192
Care givers stress themselves as much or more than do the people for whom they care. We can't be who you want or need us to be. Don't get upset with us or yourself when we aren't. Treat us as someone you love as we are, not who you wish we were or who you want and think we should be. We don't intend to make you mad just being ourselves; we don't go out of our way to make you mad. You push us to be as you are and we push back. You push us to be as we were and we don't understand. p. 209
I don't feel hopeless--I feel that to hope tomorrow will be better than today is a waste of time that diminishes my appreciation of today. p. 219
I want to encourage, advocate, promote, and persuade you to think about being a "Best Friend" to the loved one in your life who has Alzheimer's disease. p. 241

As Joe says, God bless you and this great land of ours.

Carol

Living with Alzhiemers': Have not written you all in awhile!

noreply@blogger.com (Joseph Potocny) — Tue, 13 Dec 2011 12:32:00 PST

Living with Alzhiemers': Have not written you all in awhile!

Vaccine Against Alzheimer’s Protein Slows Disease Progression In Mice

noreply@blogger.com (Joseph Potocny) — Tue, 13 Dec 2011 12:05:10 PST

Vaccine Against Alzheimer’s Protein Slows Disease Progression In Mice:

'via Blog this'

First Tau Vaccine Opens New Battlefront Against Dementia | Dementia & Alzheimer's Weekly

noreply@blogger.com (Joseph Potocny) — Tue, 13 Dec 2011 12:02:45 PST

First Tau Vaccine Opens New Battlefront Against Dementia | Dementia & Alzheimer's Weekly:

'via Blog this'

new research and findings that may help.

God Bless,

Joe

noreply@blogger.com (Joseph Potocny) — Fri, 09 Dec 2011 09:24:08 PST

Hi Joseph,

Thanks for taking the time to support Support Alzheimer's Research by viewingFisher Center Foundation Making an Extraordinary Difference in Alzheimer's Research on Causes! Now your actions can inspire others to do the same.

Share this personal invite link to get credit for each friend who views Fisher Center Foundation Making an Extraordinary Difference in Alzheimer's Researchon Causes:

http://www.causes.com/media/1125954?p_id=154017044

Thanks for all you do,

It's Your Turn to Share.

6 Advocacy

noreply@blogger.com (Joseph Potocny) — Wed, 07 Dec 2011 17:20:52 PST

6 Advocacy:

'via Blog this'

View

God Bless,

Joe

My Life and Times With Alzheimer's.

noreply@blogger.com (Joseph Potocny) — Wed, 07 Dec 2011 16:47:52 PST

I havenot posted is sometime. I have not been around for sometime. My brain has been on Jupiter and I on Pluto. Last few weeks have been very trying and uncomfortable for me. I am not used to being sick alot, but I guess I have no choice in the matter. Also have become more i guess you would say going in different directions while triing to go forward. Things are finally catching up. I am getting more and more losst in each day, for get talking to people that is becomin a chore. I still can come here and tell you how shitty it is getting.Iknow that we hada howuse full on Thanks Giving and I have been not with it since then at least. We are dog sitting or I guess we are seeing if we will be keeeping my one daughters dog for a whilce since the are moving. Just another thing to get under foot. So far thisis becomming a rather crappy holiday season, and it is nobodies fault. It is just my constant companion Alzheimer's moving in the heavier furniture for its final push however long that may take.

To my friends in Israel, you asked for my father and mother's names well real hard on the father, Joseph, my moms name was Muriel. Both have been gone for sometime, my mom over38 years and my day close to23 years. I have been very touch lately by those in other countries that have written me and I am glad that they are part of this family of ours.

I want you to know that Yolanda Sanmartino who was in the HBO Documentary is still alive and with us and of course me. We are the only tow left from Memory The Loss Tapes, and at least two of those fetured in the Caregiver part have past. Friends keep me posted. Out of 10 people seen and spoken of in the documentary only two of us are left that I am aware of. This show was done in 2008 and released in 2009 mid year. So in that short period of time 3½ years, eight have passed and most all in the 8 year or less time span. I keep being told how this disease affects people dirrerntly and I am aware of that but it still claims us when it has finished us. But what sweet freedom afterwards.

Everyone says that there is nothing good about Alzheimer's or other forms of dementia, wellI am here to tell you that it has put me at peace about dieing and that is good, it also is starting to rid me of not only good memories but many of the ones that causea great deal of pain and let me tell you that is good.

Well my head is staring to wander and hurt, take care till next time.

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

New Findings Contradict Dominant Theory In Alzheimer’s Disease

noreply@blogger.com (Joseph Potocny) — Sun, 27 Nov 2011 10:08:08 PST

New Findings Contradict Dominant Theory In Alzheimer’s Disease:

'via Blog this'

enjoy this article, i found it ver interesting.

God Bless,

joe

Thanks for the Memories ( Bob Hope)

noreply@blogger.com (Joseph Potocny) — Sun, 20 Nov 2011 10:12:54 PST

thank you for the birthdaay wishes they were much appreciated. See how sneaky my wife is.
To Karen & Kathy, sorry I lost your orders in my mess. Books are going out tomorrow.
See and you all thought I had my head screwed on right, wrong.
Life is getting more confusing and so am i. Have a Happy Thanks Giving you and yours.

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

Happy Birthday

noreply@blogger.com (Lynn) — Fri, 18 Nov 2011 17:47:49 PST

I tried posting this yesterday with no luck and that was how my day was. But I want to wish my husband a very Happy Birthday. I hope he had a good day and we shall see how next year will go.

Love You Joe

Lynn

The New Alzheimer's Tangles: Tau, Neurofilaments and Vimentin | Dementia & Alzheimer's Weekly

noreply@blogger.com (Joseph Potocny) — Tue, 15 Nov 2011 16:10:14 PST

The New Alzheimer's Tangles: Tau, Neurofilaments and Vimentin | Dementia & Alzheimer's Weekly:

'via Blog this'

finaly they are leaving old ideas and finding out there is alot more to Alzheimer's than the pros thought.

God Bless,

joe

Have not written you all in awhile!

noreply@blogger.com (Joseph Potocny) — Sat, 12 Nov 2011 14:19:39 PST

Yes i am still here, unfortunately. We now use pad on the bed, you know that song Old Man River he just keeps rolling on, well he does we and where he decideds to.Most of my momments are fuzzy now and fewer and fewer clear days. One of our family (this means all of you) recently lost there love one to Alzheimer's. I am still waiting for a picture name and birth date and date set free to post on memory page. I guess it maybe to hard, believe she has been diagnosed with Alzheimer's or som form of dementia just recently what a bitch life can be. Well i guess it is what it is. Have read some new studies that contradict the last 100+ years of the possible cause of Alzheimers. I need to post them for you all. They kind of boost my ego what is ledft of it showing what my doctor and i felt was right that they had the wrong path basically. Problem is I sit down to do thes things and forget why I am at my computer.My days consist of very little since i do not leave the house oftern and I sit down and the next thing you know i am waking pup hours later, i cn not control it I fall asleep while talkin even. Ihave held my own for sometime nowbut the disease is doing its job and catchin me pretty fast now.

I am no longer sending emails to people who could help raise our voice and face to the public, they just do not care my feelings, i get back auto reply emails, wel when it strikes home I guess they will be some of the loudesss to yell, and never look back at the chance they had to hep raise our voices.i will be taking my book off of my site for free shortly nobody really seems to want it either, so sounds like i am on a pitty pot, i guess i am, i have fought and fought and yelled been nice even9that took courage) and still nothing so you will only hear fom now on as i cn remember to let ou know how life is.

Thank all of you for being there for me.
God Bless & Keeep You & Tis Country of Ours!
joe

National Alzheimer's Plan Phone Call Results

noreply@blogger.com (Joseph Potocny) — Wed, 09 Nov 2011 10:28:57 PST

'via Blog this'

Read and comment. I listened to this entire call and state how i felt. I was interviewed but not made part of the call. After all I have Alzheimer's and am not a caregiver. Click on title to get the full report.

God Bless,
joe

Stages of Alzheimer's | Mild, Moderate & Severe Alzheimer's

noreply@blogger.com (Joseph Potocny) — Tue, 08 Nov 2011 09:39:35 PST

Stages of Alzheimer's | Mild, Moderate & Severe Alzheimer's:

'via Blog this'

interesting, i think you will enjoy.

God bless,

joe

What Can Help Cloudiness and Gait of an Alzheimer's Sufferer?

noreply@blogger.com (NewKidontheBlogg) — Mon, 31 Oct 2011 17:05:13 PDT

Coconut oil. I have been trying it with my husband for two years.

Dr. Mary Newport has just released her book ALZHEIMER'S DISEASE: What If There Was a Cure? The Story of Ketones. Now the Alzheimer's Association and other folks have tried to quiet her and her claims for coconut oil.

But in my experience with my husband and that of the author, it does help the quality of life. Check it out! Her recipe for coconut fudge is worth the price of the book.

May God bless you, Joe, and this wonderful country of ours.

Cordially,
Carol
Caregiver for My Wonderful Husband
http://plantcityladyandfriends.blogspot.com/

I have Alzheimer's and need to have fun with it or sit and cry.

noreply@blogger.com (Joseph Potocny) — Thu, 27 Oct 2011 12:04:56 PDT

Those of you who care for us with Alzheimer's konw how difficult we can be . We can get damn angery and quiet uncontrollable at times. I know I can get really confrontaitional to the point of physical violence and those around me knwo when to back away quickly and let me be. This is not really funny at all but I have to show you a video my daughter took of my getting out of hand. Before Viewing You may want to go down on the right and turn off the music. As you can see they keep me well under control.

to get the full affect of this you will need your speakers turned up.

Again I am not making fun of this part of the disease but am trying to handle it in a funny sort of manner, be pissed, angry or upset with me, I have to deal with this. As physically I am moving quickly to the later stages, my mind is starting to follow to fast but i will laugh as long as i can.

God Bless & Keep You & This Country of Ours!

joe