Living with Alzhiemers'

Hello It Is I............

noreply@blogger.com (Joseph Potocny) — Sun, 19 May 2013 13:30:33 PDT

I have been posting a number of articles of late and very little about my world. I think that is because I have fallen into the trap of others of being shall we say pansy. Well this disease is kicking my ass now and no more time to be gentle about it. Screw the so calls that say we need high profile people to promote the cause. Well does the Cancer Society= breast or otherwise, just use high profilce people is there commercials frick NO. They use real people. Why is it that real people, the commoners of this society cannot be used to promote the fight. And what is the fight that is being waged in the World of Dementia? Is it a fight to find THE CAUSE, A cure or is it one to find away to make more money with meds and getting caregivers caught up in training and bullshit terminology. People with Dementia is now becoming politically incorrect, it implies we are DEMENTED, well guess what asses we are and some of us in a violent way, lets get real. Forget symantics let us move beyond that pettiness and communicate with us that have the disease. Many of us will talk and tell you, if you just quit treating us like non persons and ask outright questions and show you are not afraid of us. I have lost a number of friends even those that followed my blog because they no longer knew what to say or ask. There in lies the greatest problem ASK the question. Yes we have some meds that seem to slow the progression of the disease, but by no means stop it or cure it. In fact when they stop working or one is taken off of them for various reasons, they seem to deteriorate rapidly to the end game and being freed. I listen to the cries from our law makers and major associations that say how much they care and are doing. Kiss my ass, that is the same crap I heard over 7 years ago when I started this blog, i said it then and now you need to talk to us we HOLD THE KEY.

I am not able to walk well at all anymore, my movement on the stairs is comiing close to Fred Astaire dancing up and down them. My eyes are getting worse, my moods are getting harder to control, I am tired of fighting to stay level shal we say. I keep quiet alot because i do not know what will come out of my mouth. I am beginning to understand now why many just kind of sit and disappear. It is much easier to deal with, but there is still some fight left in this old fart.

A View of The World From Mine!

God Bless & Keep You & This Country of Ours!

joe

Remembering4you - May 2013 Newsletter

noreply@blogger.com (Joseph Potocny) — Thu, 16 May 2013 16:52:01 PDT

Remembering4you - May 2013 Newsletter:

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This is a newsletter my friend Dr. Ethelle Lord publishes, you will see she likes Dr. Sivaks book.

God Bless,
joe

Dementia Weekly | Alzheimer's Weekly: 1/3 of Stroke Emergencies Didn't Call 911

noreply@blogger.com (Joseph Potocny) — Sun, 12 May 2013 13:04:31 PDT

Dementia Weekly | Alzheimer's Weekly: 1/3 of Stroke Emergencies Didn't Call 911:

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Info on Vascular Dementia, read.

God Bless,
joe

Dementia Weekly | Alzheimer's Weekly: NIH Announces Good News on Alzheimer's Research Funding

noreply@blogger.com (Joseph Potocny) — Sun, 12 May 2013 12:59:53 PDT

Dementia Weekly | Alzheimer's Weekly: NIH Announces Good News on Alzheimer's Research Funding:

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some help is on the way.

God Bless,
joe

Cost of Dementia Tops $157 Billion Annually in the United States | Lewy Body Dementia Association

noreply@blogger.com (Joseph Potocny) — Thu, 09 May 2013 13:38:47 PDT

Cost of Dementia Tops $157 Billion Annually in the United States | Lewy Body Dementia Association:

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Now is the time to START pushing hard for our cause and quit being wimpy.

God Bless,
joe

noreply@blogger.com (Joseph Potocny) — Sun, 05 May 2013 11:45:36 PDT

I posted about Richard Taylor being ill. Well yesterday i think it was i found out that he is out of the hospital, eating and getting better. Have written Richard but not heard back again, i still wish him well.

Many of you know my friend Dr. Joe Sivak, he wrote "When Can I Come Home"; about his experieneces as a teenager taking care of his mother who had Alzheimer's and the shall we say discussions between him and older siblings. Well I have be talking to Dr. Joe the last couple of days and my friend and friend to many of you is not doing well. He has glacoma and worst of all magucular degeneration of the eyes. Send your prayers and well wishes his way. He may get pissed at me for saying something, but his blog has given much to others. So if he gets mad i will just tell the sob that is the way it is, and we will continue to be friends.

My son got married last weekend to a very sweetheart of a lady. She already tells me to be quiet and sit down. It was nice, down at the marina in San Diego on the south lawn I think and then the reception in the Coral Room. It was a very pleasant time.

But I need to tell you it has taken me almost all this time to recover from the stress, frustration and not knowing really what was happening for that week. Once again our family descended upon us, love them all but have a hard time with 8 grandchildren, six adults in the house pllus part of bridal party, my brain cell can not hanndle it all. I know poor me.

In August I will be on a national call for the Alzheimer's Foundation of America, with my story and answering questions to caregivers I guess. I warned them about me, but God gives courage to those who need it and they still booked me. I was on Lori Bay's dementia cares show last Tuesday, what kick. Lori runs the Alzheimer's Speak, listing on the side of my blog. I am so behind in emails and thanking people, my hair is falling out what there is of it anyway.

Until i remember what i want to say take care and be good to yourselves.

God Bless,
joe

PS> this side of the fence really sucks.

Face Lift for Dementia-Frontotemporal Disease on Rare Disease Day 2013

noreply@blogger.com (Joseph Potocny) — Sun, 21 Apr 2013 18:26:49 PDT

Face Lift for Dementia-Frontotemporal Disease on Rare Disease Day 2013:

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For my friends that suffer with FTD as I also do.

God Bless,
joe

Hello Friends

noreply@blogger.com (Joseph Potocny) — Sun, 21 Apr 2013 10:40:40 PDT

Carol, Medicare does not cover much in home care or longterm for that matter. See if your hospital does not offer in home care, many do or at least will set you up with someone. That is why I got plan J when it was available and refuse to drop it. It covers short term and long term care. Bankers Life & Casualty (who has my advantage plan) does offer some back up plans that may help you and hubby, tell him HI for me and to get better soon or I will haunt him.

So my world, ooooh what fun. Physically things are going somewhere. Yesterday I was sitting on the love seat (that was probably the problem) forgottten what it is for, and I had an earthquake no one else felt. My hole body just started shakingand trembling, good thing i use super glue nothing fell off, but things inside got all messed up. I tried to sleep for awhile and did and didn't, then last night I felt like I was going to faint and fall off the couch. Today my lower half is in turmoil and my brain is trying to clear up but that is gettting harder by the day.

I have been in contact with Alzheimer's Foundation of America which is a caregivers site. I will be as of now on a conference call on Thurday, 8/8/2013 at 1pm EST with them to tell my story and to answer questions, wife will be with me to keep me on target. Let you know more later.

For now be good to yourselves.

God Bless & Keep You & This Country of Ours1
joe

PS> remember ONLY GOD CAN MAKE A PATRIOT!

Iron can't shield us from everything

noreply@blogger.com (Joseph Potocny) — Thu, 18 Apr 2013 13:09:37 PDT

Iron can't shield us from everything:

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This is a great article. Many applause from this blog.

God Bless,
joe

Previous Post ------ Best Wishes Richard Taylor.

noreply@blogger.com (Joseph Potocny) — Thu, 18 Apr 2013 12:54:52 PDT

Please note it has been updated. You can now click on items and go there and it is easier to read.

Many of us know Richard Taylor, keep him in your prayers, I found out through Dr. Whytehouse that he is not doing well, but is stable. Do not know what happened but he is ill. He is an assest to those of us who suffer. God Bless You Richard.

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

Healthtap Launch - Spectrum

noreply@blogger.com (Joseph Potocny) — Thu, 18 Apr 2013 12:48:13 PDT

April 15, 2013 - Press Release

HealthTap brings the Full Spectrum of Doctors’ Knowledge to Mobile Health

Leading mobile health platform unveils results of nationwide Top Doctor Competition, and announces new ways to interact with winning doctors and their insights.

Palo Alto, CA – April 15, 2013 – HealthTap, the only place to immediately connect with 36,000 top U.S. doctors for free, today announced an even easier, more reliable way to find the top and best doctor for you.

HealthTap unlocks the full spectrum of doctor knowledge by providing unparalleled insights into some of the country’s best medical minds through these doctors’ answers to health questions, healthy tips, and health related updates and articles. Furthermore, on HealthTap medical help experts identify the very best doctors, through a national Top Doctor competition spanning 128 specialties in over 3,100 cities across the United States.

Today’s announcement of the winners of the HealthTap 2013 Winter Top Doctor Competition recognizes some of the world's best and most helpful online and mobile medical experts. Tens of thousands of doctors competed for the prestigious awards, which include: Top Doctor, Top Specialist, Most Influential Doctor, and Thought Leader Awards. Doctors judged peers based on their demonstrated medical knowledge and expertise, and consumers rated doctors on qualitative factors, such as bedside manner and personality. Winners from the competition include:

Dr. Michael Sparacino, a Family Medicine doctor from Saint Peter, MN who won the National Top Doctor Award for helping over 29 million people!

Dr. George Klauber, a Pediatric Urologist from Boston, MA who won the Thought Leader in Massachusetts Award for guiding the most people to helpful answers through his comments and peer review.

Dr. Colin Kopes-Kerr, a Family Medicine doctor from Marysville, CA who won the Most Influential Doctor in the Nation Award for connecting with both patients and doctors and providing valuable education and support.

Dr. Maritza Baez, a Family Doctor in Buffalo, NY who won the Top Family Doctor in New York for helping millions with her knowledge and care.

Dr. James W. Ferguson, a Pediatrician in Waco, TX who won the Top Pediatrician in the Nation Award for helping the most parents help their children live healthier happier lives.

Users on HealthTap can easily see what makes these doctors winners, connect with them, and learn from them for free. Through the all new HealthTap Spectrum, now a part of all HealthTap’s apps on mobile devices and online, people can find highly trusted, doctor-created and rated content, including:

· Concise doctor updates on the latest health findings

· Daily health tips created by doctors in more than 100 topics

· Quick, personalized doctor answers to health questions

· Deep Health posts where doctor share their opinions and insights

· Transparent doctor-doctor consults and dialogues

“HealthTap is putting care and trust back into healthcare by placing the doctor and patient relationship back at the center of the healthcare experience,” says HealthTap Founder and CEO Ron Gutman. “By giving top doctors a simple way to share their knowledge and opinions and get recognized by their colleagues for their expertise, and by users for their bedside manner and care, we’re creating a healthy competition that motivates the best doctors to stand out and help millions everywhere. In a world where we expect to get immediate, reliable and deep insights on movies and restaurants on our mobile devices anytime anywhere, it’s high time we have an easy way to get the same when it comes to our health and well being. With the new HealthTap Spectrum we’re leading the way to comprehensive, caring, trustworthy and high quality mobile health.”

About HealthTap

HealthTap is the best way to connect with the most trusted health information and doctors. With top-rated web and mobile apps, HealthTap offers immediate and free access to personalized, reliable, and trusted health answers and tips from a network of over 36,000 U.S.-licensed doctors. Sign up today and download HealthTap’s free app for iPhone, iPad or Android at www.healthtap.com.

As many of you know I rarely endorse things or companies or remedies on my blog, I post and leave it up to you. But I have been a member of this company for sometime now. I even ask questions. Many of you may have seen and or used the Ask A Doctor query box on the right side of my blog, that is presented by Healthtap. Our box is set for dementia basically. Sign up for an account or just use the query box. HEALTHTAP

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

joe

Food Sciences Blog | Pomegranates (Food Tip – 15)

noreply@blogger.com (Joseph Potocny) — Sat, 13 Apr 2013 13:09:53 PDT

Food Sciences Blog | Pomegranates (Food Tip – 15):

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interesting article.

God Bless,
joe

Eat2think! | Dementia & Alzheimer's Weekly: How Axona Milkshakes Help in Alzheimer's

noreply@blogger.com (Joseph Potocny) — Sun, 07 Apr 2013 10:45:30 PDT

Eat2think! | Dementia & Alzheimer's Weekly: How Axona Milkshakes Help in Alzheimer's:

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interesting article.

God Bless,
joe

NIH Workshop on Alzheimer’s Disease-Related Dementias: Research Challenges and Opportunities | Lewy Body Dementia Association

noreply@blogger.com (Joseph Potocny) — Sat, 06 Apr 2013 12:48:04 PDT

NIH Workshop on Alzheimer’s Disease-Related Dementias: Research Challenges and Opportunities | Lewy Body Dementia Association:

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Those of you on the East Coast maybe able to attend this.

God Bless,
joe

Cancer Drugs and Alzheimer's

noreply@blogger.com (Joseph Potocny) — Tue, 02 Apr 2013 16:20:34 PDT

"Noticing that people with cancer tended not to get Alzheimer's disease, and vice versa, Florida researchers screened FDA approved anti-cancer drugs for their ability to reduce Alzheimer's plaque. Learn how carmustine stands out, decreasing amyloid β levels by 75%."

This is the second report I have read on this drug. Well if the reports are correct, good bye Aricept, Namenda, Excerol(or however you spell it), Coconut Oil, Tumeric, etc. Of course the drug only retards the progression no cure, but that is a lot more than the rest really do.

I have read up on Vitamin D3 and Omega3. I take 2000IU of D3 daily and maybe that is why I am not still not completely out to pasture. Although things are getting more uncomfortable and I have the wrong words come out when I talk and forget what the heck I am saying. Stairs are becoming a real problem for me and walking even worse.

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

What Your Nails Say About Your Health | Caring.com

noreply@blogger.com (Joseph Potocny) — Thu, 28 Mar 2013 12:22:17 PDT

What Your Nails Say About Your Health | Caring.com:

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While this blog is about Alzheimer's and dementia specifically, I do like to bring articles on health that I think may be of use from time to time, this is one of those.

God Bless,
joe

How to Live in Assisted Living - NYTimes.com

noreply@blogger.com (Joseph Potocny) — Fri, 22 Mar 2013 09:24:22 PDT

How to Live in Assisted Living - NYTimes.com:

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interesting article.

God Bless,
joe

What the Alzheimer’s Numbers Really Mean | Dating Dementia

noreply@blogger.com (Joseph Potocny) — Tue, 19 Mar 2013 14:28:17 PDT

What the Alzheimer’s Numbers Really Mean | Dating Dementia:

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good article

God Bless,
joe

An Article about me & this Disease.

noreply@blogger.com (Joseph Potocny) — Thu, 14 Mar 2013 17:45:28 PDT

Caught Between Realities
(By: j.v. potocny)

Come with me into my world of Alzheimer’s, to help learn the joy, pain and peace that

one can find. By the way my name is Joe, yes simply Joe. I am a sufferer of Alzheimer’s

(AD) and Frontal Temporal Dementia (FTD). In other words my brain does not function

like yours. But that is ok, I live in a multiple of realities, unlike you I never know when

I will pop in or out of any of them.

My life is kind of like Bugs Bunny having Elmer Fudd chasing after him. I pop up in one

place, than another and so on, until I find you. However I cannot dig holes to go into I

would wind up falling in them. See this life presents many problems but one has to find

the humor in it or just totally give up.

What you need to realize is that there is NO CURE, NO TREATMENT (OF VALUE)

AND NO KNOWN CAUSE for these diseases. Yes that is right Virginia, we all DIE from

this disease. Life expectancy is about 2 – 10 years from diagnosis, more or less. Remember

AD, FTD and other forms of dementia are not forms of MENTAL ILLNESS, they are

DISEASES. Our physical brains actually shrink and loose functionality. It is my personal

opinion that AD and other forms of dementia are auto immune diseases. I base this on

the fact that the body for whatever reason causes the formation of the protein strand

that becomes part of the beta amyloid protein, the suspected culprit in this disease. Just

a little note these amyloids can cause heart attacks, kidney failure, liver problems, in

other words can affect many organs throughout the body besides the brain.

We who suffer from this disease get to meet new people almost daily, even in our own

households. Kind of like an EMU, who turns around to look at the same person and sees

a new person, a new friend. We get to forget the past gradually, the good stuff to be sure,

but also the pain caused by others in our lives and ourselves. We get to forget all the

nonsense we were taught. The birds, clouds, trees and such all take on a new meaning in

the world we are thrust into.

If you are reading this and saying to yourself, right this guy is ok, I want you to know

that spell checker and grammar checker are wonderful. See if I chose not to use them, as

I do on my blog, you would need to learn how to Speak Alzheimer’s. My dialect is known

as joeneese, yes all my own a mix of various words, utterances, looks and whatever else

comes along.

Most people wonder how one handles getting this news. Well let me tell you some go to

pieces, some cry, some get angry, some wonder why me, etc. Me I just said thanks now

you have confirmed what I have thought for the past 10 years or so. See I suffered from

what I now call, DDSS or better known as Depressed Distracted Stress Syndrome. I have

found over the years since 2004 that many people with AD went through the same

annoying diagnosis when they knew the doctor was off the beam so to speak if not

outright crazy. To be validated was a relief to me not a blow to my life. Actually being

given this death sentence relieved me of some fears of death. See I never feared dying

but I did fear death from a heart attack or that Nano second between life and death as

we call it. But suddenly that no longer bothered me it just went the way of a wind storm

puff.

I am not a religious person, so let us get that out of the way, but I do believe in one God

and Jesus Christ. See I look at myself as a Spiritual Being Having a Human Experience.

Let me tell you it has not been fun or comforting, really until now. I know I am leaving

here and that is ok now, where I will wind up we will see. I do have places I go to now

but I doubt that is where I will end up, although I would not mind.

Some of the humorous things I find is my wife calling me, Joe, Joseph, Joseph where are

you, and turn to her and say what rather with a little terseness, see she has called me

back from where I was. She asks me who have I been talking to and where was I. By this

time I have no idea of what the heck she is talking about, because it is gone from me. She

tells me I was sitting there talking and moving my hands and looking out as if I could

see who it was. Maybe she should join the conversation, who knows what might take

place. Some of our family discussions at the dinner table are just, well right out of a

sitcom. For me especially because it does not take long for me to get lost in them and not

know what is going on, let alone why I have this plate of stuff in front of me. I even

laugh at myself when I fall. Everyone gets so concerned and all I do is lay there and

laugh. See I find these things to be funny, why because I am laughing at myself and my

own stubbornness’ at times. Like climbing on a ladder, no business being on one, and the

next thing I know the ladder went for a walk and I met the floor on my back and head.

Do not get the wrong idea, this world of Alzheimer’s and other forms of dementia are

without a doubt terrifying. Not only to those who take care of us, and we can be a real

handful to deal with, but to us that wander in the fog of it. See we not only have to try

and live in your reality, but we are forced into a different reality, the World of

Dementia. A life of continual forgetfulness and being lost and not knowing where you

are one minute to the next. Filled with frustration, aggravation, not being able to do the

things you once could. Sitting down to do something and there you sit because you do

not have a hint of what it was you were going to do. I had to take a break from this for

a couple of hours, because my brain hurt and stopped talking to my hands and I did not

know what to write or say. I do know one thing that someday I will be set free from this

life of different Joe’s and be just Joe in yet another reality.

God Bless & Keep You & This Country of Ours!

joe

Planning for Alzheimer's-Kiplinger

noreply@blogger.com (Joseph Potocny) — Mon, 11 Mar 2013 09:07:26 PDT

Planning for Alzheimer's-Kiplinger:

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Good article, i am sure many have wondered about these things.

God Bless,
joe

UNDERSTANDING THE EMOTIONAL/SPIRITUAL ASPECTS OF ALZHEIMER’S DISEASE | Ravenstarshealingroom's Blog

noreply@blogger.com (Joseph Potocny) — Mon, 04 Mar 2013 18:45:21 PST

UNDERSTANDING THE EMOTIONAL/SPIRITUAL ASPECTS OF ALZHEIMER’S DISEASE | Ravenstarshealingroom's Blog:

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great article. more scientific studies starting to back my year old thought process that Alzheimer's is an auto immune disease.

God Bless,
joe

Good Bye Yolanda Sanmartino - You Are Now Home!

noreply@blogger.com (Joseph Potocny) — Fri, 01 Mar 2013 11:46:40 PST

Today is a day that my ears and soul are fillled with tears. They are tears of joy, sadness and yes jealousy. My comrad in arms from the Alzheimer's Project, Memory The Loss Tapes, Yolanda Sanmartino, The Lady in The Mirror passed away 3 days ago. I got a very short but simple email from her son Roberto, informing me of her passing. And thanking us for remembering her and checking.

Today one note has come down from my computer desk, that is the one that reminded me to check on Yolanda and the info i needed.

I feel kind of alone today. There were seven of us in that documentary and now I am the last left here. All the others have been set free now. The bus keeps passing me by and not stopping. I find no humor this day so far, this damn bastardly disease has yet claimed another friend. When will people hear us?

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

Alzheimer's Sings!!

noreply@blogger.com (Joseph Potocny) — Wed, 27 Feb 2013 14:17:29 PST

Yes I have been informed by my wife that i have acquired a new job while i sleep away the niight. I SING, look out the next Caruso is being born. Also i am talking in clear voice as well, now that can become a problem, if i reply to questions. My secret past will come out and I will no longer hold that mystery about me. Who says there is no fun in Alzheimer's has never had it or forgot to look.

I just thought i would pass this on. The never ending story of the Alzheimer's journey, adventure at every turn.

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

Healthy Heart | 7 Signs of an Unhealthy Heart | Caring.com

noreply@blogger.com (Joseph Potocny) — Sun, 24 Feb 2013 18:00:51 PST

Healthy Heart | 7 Signs of an Unhealthy Heart | Caring.com:

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This is not a topic I generally place on my blog. But I subscribe to this site and this article just YELLED at me to be passed on. There are other links to good topics. I hope you find this helpful and just maybe it will help your life.

God Bless & Keep You!
joe

Shattered Love

noreply@blogger.com (Joseph Potocny) — Fri, 22 Feb 2013 15:57:39 PST

I posted once awhile ago about this movie. Well finally we are filming this weekend, with hopes of getting things all done by 3/6/2013 and ready for the Cann Film Festivle (i still cannot spell). You can check the following Facebook Page of info Shattered Love. Hope to have pics from the filming posted quickly. Your support is still needed. Thankks to all those that have helped.

I do not know why but i am getting involved in other tasks. Hopefully i will be able to keep them straight and keep you informed, won't be a timely manner - time is no longer a part of my thingking or doing.

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