Monday, February 20, 2017

Alzheimer's Giveth and Taketh!

I put a comment on a Facebook post and once my ½ brain cell traffic jam cleared up it started to see what I said and what has happened to me since Alzheimer's and I have become such close friends.

After being diagnosed I started this blog over 10 years ago. My wife keeps reminding me why from time to time because I forgot. See I started it for me and me alone. As a kind of journal I guess of what was happening to me.  I never expect to have anything come of it or anyone to read it. Now this will sound like an ego trip and it may well be for the moment.

In this time more than 124,000 people have visited my blog, it is read in over 90 countries, I have 48,000+ steady readers, it is used in over 165 care facilities in the US and other countries. I have a book published, Living With Alzhiemer's (A Conversation If You Will), featured in a documentary by HBO called "The Alzheimer's Project" (I am the only left from it that I can find, that is about 13 other gone since 2008 till 2013), several National Webinars, Alzheimer's Speaks Radio with Lori Bay, blog has won a ton of awards, have been called a hero, strong person, and SOB, hard ass, wonderful, etc.  Who would have ever thought a person like me would garner such attention, certianly not this person. I sit in awe everyday of it. These are some of the gifts I have been given because of this disease, Alzheimer's, Frontoltemporal Dementia and just no brain cells left.

I challenge all the studies and claims and you know it seems they all fall apart at the challenge. There is no cure, no treatments (that really work), and the hope seems at least to me very small that the medical field will ever get their collective heads out of their asses and figure this out. Crap they have had well over 100+ years.  But what the hell, we are still referred to as "THOSE PEOPLE". See I do my very best to tell it how it is, not how I would like it to be or how you want to hear it.

It has taken my freedom from me, I cannot go anywhere without being taken. Go on a walk alone no way I may not return. Once I took my granddaughter to the park by the house, she was about 5 I think. I was lost, she took me by the hand and said it is ok grandpa I know the way home and so she did. Each day it takes another slice of me, this fricken damndable disease.  I have even look straight at my wife while talking and asked her who the hell she was, because I forgot. I can be sitting watching TV or talking and I am gone, not asleep although that happens, just gone my body is there and Joe has disappeared. I no longer can use power tools and build things, I have forgotten more than 3/4 of the computer knowledge I had. I can see what I want to say or do, but cannot get it out of the pathways of my brain. It screams and yells at me to let it out, but I have no control over it. There are times like this that it flows from me, but not very often anymore.

Well my soap opera box is weakening so I will say till next time:

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

Thursday, February 16, 2017

Thank You Feedspot

Hi Living with Alzheimer's Team,

My name is Anuj Agarwal. I'm Founder of Feedspot. 

I would like to personally congratulate you as your blog  Living with Alzheimer's has been selected by our panelist as one of the Top 40 Alzheimer Blogs on the web.


I personally give you a high-five and want to thank you for your contribution to this world. This is the most comprehensive list of  Top 40 Alzheimer Blogs on the internet and I’m honored to have you as part of this!

Best,
Anuj

 Anuj Agarwal
 Founder, Feedspot
 Email: anujagarwal@feedspot.com
 Linkedin . Twitter



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

Wednesday, January 11, 2017

Sitting and Thinking?

Well here I sit at my computer, trying to figure out what to post but this disease of mine, Alzheimer's does not want to cooperate with me. I had this wonderful post in my head and well I guess it is lost among my brain cells. This is a very frustrating time for me, see for the first 10 years with this friend of mine I was still able to function brain wise to an extent, now I get confused more, remember less and even forget what I am doing. It is part of the process and not much I can do about it. This is what makes me angry and strike out at people and go into tirades. The loss of my independence to go and do as I want is no longer mine. It is hard to explain to others what it is really like. You have to live here in my world and walk the corridors of my mind to know, but I think it would scare the hell out of you it sure does me.

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

Saturday, January 07, 2017

Who is in control, Me or Alzheimer's?

Today I was listening to an Internet Infomercial to cure Alzheimer's with this special diet that has cured over 47,000 people World Wide.  Yes, you to can get this miracle food receipe for the small sum of $37.00, what Bull Shit.

This crap erks me, and the people who fall for it. I know they want to get rid of the disease, but it just does not work that way. I wish it did, but the fact is you get it, Alzheimer's and other dementia's get worse and we die from them, PERIOD! If I could i would remove all this crap from the internet, but unfortunately not possible.  I just keep trying to warn those of us that suffer from Alzheimer's, Dementia, Parkinson's, ALS, PCA, Vascular Dementia, Lewy Bodies, etc., if all this stuff truly worked we all would be cured. I notice the Coconut Oil cure is not heard of anymore.

My friends to cure or halt a disease, you need to know the cause, and we do not know the cause of most dementia's, a few we do and can treat to some extent.  I am not an "EXPERT", but for 12 years I have lived in this world and watched friends die and get worse by the day.  For some reason I am still here, maybe because I am such a PITA (pain in the ass), neither heaven or hell want me.

My days are not all fun and games and wonderfull, most of the time I just sit and try to figure out who, what and where am I and why am I.  I get no answers anymore.   I use to talk to myself, it was the only way I got answers that made sense, now? I can start things, but finishing them is another story, I just stop and forget all about them and even wonder why I am doing them in the first place.

I am becoming more demanding and hostile these days and finding it difficult to control my anger and keeping my mouth shut.  I no longer have the control and probably never did.

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

Friday, December 30, 2016

Purple Angel Ambassadors

Today I was greatly honored to be accepted as a Purple Angel Ambassador, to help spread and for spreading the truth about those of us with Dementia to the World.  Thank You, what more can I say. Such a group to be associated with.

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

Thursday, December 29, 2016

Dancing With Alzheimer's and Dementia.

Well, here I am sitting again and trying to think of what it is I want to say.  The last couple of months for me have been difficult. Too many people here and staying with us, it drives me crazy. The activity confuses me the conversations escape me and I just sit like a bump on the log. The longer I am still in this world of mine, the harder it is to get around. I do not understand why I still am here after dealing with Alzheimer's, Frontoltemporal Dementia and life in general. I was to be gone by now. It is hard for me to really tell my feelings anymore.  I feel most of the time like I walk into one wall, bounce off of it into another and the cycle continues all day and night.  Now if I even get up late my whole day is off and I forget what I am to do.  Change is becoming near unmanagable and I once loved it and thrived on it, not anylonger.

It seems that these diseases or conditions, whatever the hell you want to call them have their own agenda, it is like dancing with someone and you do not hear the music or know the steps.

It is probably me, but friends ask for help and you do what you can, but whrn you ask they seem to be not really interested. My brain hurts, what there is of it.

A warning do not believe all the illusions put out on the web, causes, cures and the other shit, because that is all it is. The reality of all this is there is no cure, they do not know what causes most of all Dementia and cannot really help us.  If the could you would see people wearing T-shirts saying I Survived Dementia or Alzheimer's, or the such. Fact is we Do NOT.

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