Friday, May 20, 2016

Frontotemporal Dementia takes John Berry Home!

At the age of 52 the founder of The Beastie Boys, rock band, has died from Frontotemporal Dementia.  John was born in September of 1959.  He had over 25 yrs in the music business when the problems of this disease started its' manifestations.  I know how he must have felt because I also suffer from FTD, formerly called Picks.

Goodbye, my friend, you are now home and no more suffering.

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

To learn more about this disease:  Frontotemporal Dementia


Wednesday, May 11, 2016

GSHS - Alzheimer's results for me.

Back in January I joined a study to help with Alzheimer's. It was not for a cure or the real cause, it was to see if it could be slowed and give back some of that which a person had lost.

Most of you know I think most of the studies are crap and accomplish nothing. I got involved because this was one that had no preconceptions of the disease. It involved the whole person. Not just the normal tau protein's and tangles. It approached Alzheimer's and Dementia more as an auto immune disease, where the entire person needed to be treated.

It covered the chemicals in the brain, blood, organs, emotions, physical being and the spiritual side of the individual. Well I finished my current involvement on 5/6/2016.  The conclusion is that I have a 25% improvement in my over all being.

Here is what I can tell you.  I have lost about 20 pounds, I am finally after years back to walking daily. For the first time in how long I actually used power tools. On Monday, I helped my daughter do something that I always enjoyed, we sanded down her oak dinning table to get it ready to refinish it. She has to decide on how she wants that process, which I am ready to do.  Six months ago this would not have happened. I have more energy and do think a little clear, but still get confused and have problems getting things from my head to mouth still. Guess I have head and mouth disease. My writing is easier.

The proof is in the pudding as they say. Time will tell how affective this was by how long improvements remain. No claim I am cured, just better than I was and that is a success for the study in my opinion.

Also we got two new kitties and eight month old and one year old. The one year old had left front leg removed and is in a shell, my heart said she had to come hear and we got the younger one to help her in her recovery. So far things are slow but progress not perfection is the way.

Alzheimer's, dementia and Frontal Temporal Dementia and I are still together and will be for the duration I believe, but management without drugs, is helping to improve things, also ten thousand supplements (really not that many) are helping physically. You maybe stuck with me for sometime to come, as long as I can break this wall between me and writing on my blog. It still is bigger than I and wins the battles for me writing.

Until next time be good to yourselves my family.

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

Saturday, April 30, 2016

Good Bye My Blaze!

BLAZE
2/02/2002 - 04/29/2016

Good Bye my Blaze. I promised you that when we got you from the pound that
you would be with us until the end.  Your heart problems, kidney problems, your
constant ear infections and messed up joints we took you as you were to help and
give you a life filled with love and caring.  After you spent the better part of 5 years
in the pound on and off, you came into our lives. The last week of you life was not
of quality and pained us as it surely did you.  Not eating, drinking, going to the bathroom,
crawling in bed with us to snuggle and sleep, but hiding and not coming out. So on Friday
we along with your vet decided it was time for you to go and be free of your illnesses and
lack of life quality.  I kissed you and told you I loved you and as we looked each other in
the eyes, I saw your pain and earthly life leave you and I knew I kept my promise. My heart
is filled with pain and a sense of loss, but I know you will always be with us.
Good Bye and Live Well With The Lord, MY FRIEND!



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

Saturday, April 09, 2016

Hello To All

I have joined a study on dementia called GSHS sorry do not remember what it stands for. To me it means God Send Help Soon.  My brain is more confused then ever. Have many highways in it that lead to nowhere. Like with most things I have to do I get stopped at the beginning. I have simple reports to fill out for the study - so simple that I am eight behind and need to fill them out. Cannot tell if this is helping, just know I am doing it. I do not understand how it is to work but what the hell, if it works will let you know.

I am pleased that I no longer get all the BS stuff on the cause and cure for Alzheimer's and dementia.  We know they do not know the cause or how to cure or even how to affect real treatment. So I stumble and bumble along. I have started walking with my wife, which is helping my balance to an extent and gives us some quality time though it be short.

Till nex time be good to yourselves.

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

Thursday, March 24, 2016

I am still here

It has been sometime since I posted, but I wanted to say HELLO to all of you.

Life is getting more uncomfortable. I now hear different conversations from those I am talking  with then they are having.  My wife has learned to just go with the flow, because I cannot even speak my words correctly. Still can write, just confuses the hell out of me.

Last  6-7 weeks have been rather difficult.  Had my annual checkup in October, got my flu and pneumonia shots. Found out had a hernia, plaque in my carotit arteries, my heart and my neck is a mess as well.       Wnt  on two week vacation in January, visiting some of the kids.  Back a week my right kidney decided to let me know it existed for about a week.  Hernia surgery scheduled for 2/19, you guessed it did not happen.  See I got the flu and it turned into pneumonia, great for the shots. Doc wants me to get the shiggles shot, I think will pass on that. Finally had my operation on the 7th of March. Still healing.

so much for life. See you all later.

God Bless You & This Country of Ours!
joe

Wednesday, January 06, 2016

Why I post about my Alzheimer's.


MESSAGE SENT THROUGH YOUR WEBSITE



This form was submitted:  Oct 29 2015 / 10:58:42 by a visitor with this IP Address: 

userid = jpotocny

FirstLastName =

Email =

Message = Thank you so much for you participation in the HBO documentary, your blog and your continued work. I have shown this documentary in my psychology class for several years now and it has helped students, and myself, gain a new perspective. Please know that you are in the thoughts of all of us that has followed your testimony.

--------------------------------------------------------------
It is reeiving email aand comments like this that make me feel I am reaching someone.

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


Wednesday, September 09, 2015

Fragile Storm

I know I said the last post was my last, but I just received this email today. I wanted to give you the opportunity to see this films trailer. It has taken us almost 3 yrs to bring it to truition, yes I am a backer and funder of this film.


Hello Fragile Storm Backers!

WORLD PREMIERE!!  NEW WEB SITE!!  NEW MOVIE TRAILER!!  NEW MOVIE POSTER!!   BE THE FIRST TO SEE IT ALL!

We are thrilled to announce that our world premiere will be at the Hollywood Film Festival on Thursday Sept 24th at 6:45p!   http://hollywoodfilmfestival.com/films/fragile-storm/

At the amazing Hollywood Arclight we'll be screening five separate times throughout the entire festival!  Yes, they are rolling out the red carpet for us and Lance Henriksen will be in attendance!!

We'll be sharing ticket information soon, as we're trying to get a bulk discount.   Some of you who donated at the premiere level will be getting complimentary tickets.  We'll be emailing you directly about that soon.

I'm also thrilled to announce the release of the Official Fragile Storm Trailer that you can watch and share at
www.FragileStorm.com, our Facebook page or directly from vimeo at https://vimeo.com/138027922.   Be sure to share the trailer on your social media and mention that you are a backer!

All of this, as well as the cast, crew and film credits can now be found at our web site www.FragileStorm.com, so be sure to check the "Meet Our Backers" tab on the web site to make sure your name and position are correct.  This is absolutely the last time to get any corrections made to the film credits.

God Bless,
Joe