Lewy Bodies Dementia - Robin Williams Taken by the horrid illness and closer to "home" this took my Mom within 6 month and she passed away June 9th, 2016

http://curec.lk/2e1mP5t

#LewyBodyDementia #LewyBody #Dementia #LewyWho

 

 

On August 11th, 2014, the world lost a wonderful beloved man. Robin Williams was an amazing actor, comedian, and philanthropist, who touched the hearts of millions with his wit and humor. However, Williams suffered from a degenerative disease that, after his death, was identified as Lewy Body Dementia.

Although Lewy Body Dementia is not a rare disease, it is still widely under diagnosed and many doctors and other medical professionals are still not familiar with it. It is often confused with Parkinson’s or Alzheimer’s disease due to the similarities of the symptoms. Doctors thought Robin Williams had Parkinson’s before an autopsy revealed the massive proliferation of Lewy bodies throughout his brain, one of the worst LBD pathologies the medical professionals had seen.

In an effort to raise awareness of Lewy Body Dementia, Susan Schneider, Williams’ wife, wrote a letter addressing all doctors, medical professionals, and patient advocates to share her husband’s story. You can read it here: The Terrorist Inside My Husband's Brain.

There is no cure for Lewy Body Dementia yet but we are hopeful. CureClick has launched a new mission for a clinical trial for Dementia with Lewy Bodies to help find potential treatment for patients suffering from this degenerative disease. Please share this trial with everyone you know and help raise awareness.

This is a direct passage above from "Cure Click"

#OneLineOneDay - the Lupus Alliance Message so Crucial for ALL of us with Lupus

Today is the day. Join the Lupus Research Alliance and thousands in the lupus community today for One Line, One Day as we spread awareness with a simple message:

Join the Lupus Research Alliance in a unified effort to free the world from lupus through the power of science. #OneLineOneDay

The Lupus Research Alliance believes in the idea of collaboration as the way to find better treatments and ultimately a cure for lupus. Today we ask you to join us in sharing this message. By working together with the entire lupus community, we will accomplish our mission.

One Line One Day is your movement. Share this message with your friends and family through Twitter, Facebook, Instagram, email - any way you would like to encourage people to help us to spread the word. Through this simple action, we will increase lupus awareness today and beyond until we reach our mission of finding a cure.

New Clinical Trial by Cure Click for GERD

	Recruit for Gastroesophageal Reflux Disease (GERD)
	Gastroesophageal reflux disease (GERD) is a chronic digestive disease that occurs when stomach acid or, occasionally, stomach content, flows back into your food pipe (esophagus). The backwash (reflux) irritates the lining of your esophagus and causes GERD. Both acid reflux and heartburn are common digestive conditions that many people experience from time to time. When these signs and symptoms occur at least twice each week or interfere with your daily life, or when your doctor can see damage to your esophagus, you may be diagnosed with GERD.      http://curec.lk/2dw9oHn   #GERD #heartburn #AcidReflux #reflux

Cure Click Brings a Clinical Trial for Urinary Incontinance caused by Spinal Cord Injury, Multple Sclerosis

Approximately 80% of people with Multiple Sclerosis will experience some degree of bladder dysfunction. Symptoms include difficulty holding urine, difficulty starting a urine stream, feeling like the bladder won’t empty completely, having to go to the bathroom at night frequently, and having to urinate frequently. 

 

 

http://curec.lk/2dBya93

 

NEW CLINICAL TRIAL BY CURE CLICK - THIS ONE HITS ME PERSONALLY - LEWY BODIES DEMENTIA!

Again this is so critical to me in such a very personal way. If you and a loved one has been diagnosed, or shows "signs or symptoms" of this extremely rapidly degenerating type of Dementia, you can screen for a Clinical Trial sponsored by Cure Click. I watched it take my Mom within 6 months. She had "some signs" of dementia, forgetfulness, and several others about a year or two before. Yet, none that led to a real diagnosis, then this horrid disease seemed to "take over" suddenly, and I literally watched her "change" day by day, as I've told the story so many times. This is NOT your "typical dementia or even Alzheimer's) not that they are not awful, yet Lewy bodies as a whole different type of dementia, aggressive in nature... and honestly, they still lack a great deal of the "why's" of this particular one.... Please share this with others. I would so appreciate you giving out this to others that may have someone they have seen in this type of rapid declining of mental, physical, and emotional realms so suddenly.

 

http://curec.lk/2e1mP5t

Been told you or a loved one have #LewyBody #Dementia? Participate in a clinical trial! See if you qualify. http://curec.lk/2e1mP5t 

News From National Pain Report and Dealing with the Congress, CDC, and Government and Chronic Pain, Medications and much more!!!!

Chronic Pain Patient Rally Set for Washington D.C.

Posted on October 10, 2016 in Diseases & Conditions, Other with 23 Comments

by Ed Coghlan


PLEASE GIVE THIS A READ! IT WAS in my newspaper a couple of days ago, and I wanted to post it here, separately because I know MANY of you are TERRIFIED of what us, as Pain Patients, Chronically Ill, and Already been through the mill, many times shall do, if things change drastically in regard to our medications.... So, I felt this needed to "stand out"... boy I need to again, since it has been awhile post my battle since the age of 17 years old with chronic pain, that started with severe migraines, and never stopped, going into all different types of chronic illnesses, that cause horrid pain....

The YEARS I SPENT just "trying" to find a doctor, a legitimate pain physician to treat me.... and it was only about 10 years ago, I FINALLY FOUND HIM IN DALLAS TX! The man is a true "hero" in my book for sure....



http://nationalpainreport.com/chronic-pain-patient-rally-set-for-washington-d-c-8831671.html

Cure Click WINS SILVER in a very Prestigous Awards Ceremony!

Cure Click is really deserving of this. They are really working hard to get people into clinical trials, and getting those like myself, to spread the word on these trials so more people get the information. 

CureClick Wins Silver at the MM&M Awards for Best Use of Social Media of 2016

 

 

http://community.cureclick.com/cureclick-wins-silver-mmm-awards-best-use-social-media-2016/#comment-309

Fearful that something is very WRONG & not sure what I want t do honestly....

First of all, I want to see who reads this. Some of those if they do, should "respond" to me quickly.

IF they DO NOT, then I know they lie to me about "reading" my blog posts and FB posts etc.


I've lost something like 24 POUNDS for no "real reason" over the past about 8 months. I "chalked" it up to stress of all I went through with my Mom, the Dementia, then the grief and everything that is STILL going on even after her passing away.

Funny how even "family" can be so damned "selfish" once they "think" they are getting a little bit of the "green stuff"... or if they are NOT, and so forth.

Anyway, I've been having severe "night sweats", I mean COLD, shivering, soaking wet to the bone, and all onto my sheets, my blanket and so forth. Those have been going on now for about 2 years off and on... but lately they are much worse.

Then I KNOW I am anemic, and have been, I take B-12 injections monthly BUT my RBC IS not BETTER but WORSE, anytime I have labs drawn.

Then there is the bone weary fatigue. I struggle with severe fatigue, and have always felt it was the Lupus, RA and so forth....

I cannot sleep, the lymph nodes in my neck stay swollen and the Left one under my ear is like a rock, and sore all the time.

THEN, I developed this one "lump" about the size of a LARGE marble on my L. Butt cheek about 6 months ago... rather than go away, now it appears like it is "sunken in" around it, with a bluish tint, almost looking bruised YET it is NOT bruising... I've had NO trauma there and now this past week up and down my outside right thigh, I began to "feel" the little lumps, about 4 or 5 of them...

I've looked and researched, and although we know often these things may mean nothing, YET I fear I may have "Non-Hodgkins" Lymphoma.

The "symptoms fit"... and with my other issues like Lupus, RA, Sjogren's, Raynaud's and so forth, my chances are much greater of having something such as this... I shall say no more for now... and see if anyone reads this....

#PrayforFlorida - Hope people heed the warnings and get out while they can.. May they be blessed by all thoughts and prayers....

#prayforflorida

MAY ALL BE SAFE OVER THE NEXT DAYS TO COME... HOMES, PROPERTY, CARS, ALL CAN BE REPLACED, BUT LIVES CANNOT....

I PRAY PEOPLE HEED THE WARNINGS AND GET OUT, OR TO A SAFE SHELTER....

OUR HEARTS AND PRAYERS ARE WITH EACH OF YOU UP AND DOWN THE EAST COAST IN THE WAY OF THIS HORRENDOUS HURRICANE!

Thousands Without Power in Florida as Hurricane Matthew Begins Its Assault

https://weather.com/news/news/hurricane-matthew-florida 

 

 

 

 

 

 

 

 

 

Surviving - Being a Caretaker even after the person passes away, dealing and coping with loss & still "feeling" someone still having a hold on you from the "grave" - Decisions when you are chronically ill, in pain & trying to make everyone "happy"

I've been trying to "get over" what all has been left behind for me to deal with since June 9th, 2016 - Actually more like the start from about 9 or so years ago, when I came back to TX, to help my Mom.

Most of you that follow me, know I was an only child, my Dad passed away in 2005, and by December 2005, I moved back here from Seattle, to help my Mom. I've talked about due to Dad's upbringing in the "Depression" back in the 20's and 30's Dad's "way" of handling life was much different than those who were younger. Not that he had "bad ideas" but there were many things he could never accept, that were just a part of life, as it evolved and changed.

We each know life does not remain standing still. Each day, there is something new, whether it be something horrible like the "wars" overseas, and innocent lives, even children suffering for no reason but greed from others who want to "rule" over people,

There are also many good things that almost change daily, from cell phones, to technology, jobs, the way our country is ran, and all types of good things that can change within a breath's space.

My life, as well as many of yours have changed, evolved, grown, fallen, gotten up, and tried to march on, even through the pain and suffering, the embarrassmentand the good, bad and indifferent of this world.

Speaking of, our nation and world are in such a torment, chaos and it's hard to fathom other humans can do some of the things they do to those like them, humans. Each day the news seems to worsen over not just all of the overseas fighting, hatred, war, and such, but right here in our nation, each evening, I watch almost in horror of what act of violence has happened that day.

I was left to "take care of" all of Mom's affairs, of course Executrix of her Will/Estate, as you can call it.

Mom had made some really "bad" choices when she was alive. She did some things that as much as I had tried to help, explain, and give her insight along with her financial advisor at the time, to get her to understand, some of what she was trying to choose, could cause family issues someday after she was no longer here.

I never "told" her what to do or not do, but helped her, by explaining why I felt one way or the other, as well as her advisor also helped to guide her into not causing family grief, anymore than we would already have after she had passed away.

I had been here over 10 years, and for most of that time, I helped her with just about  everything, from bills, to putting gas in her car, to helping her and doing her taxes, explaining things she did not understand, you name it, I did it... I am an only child, and I felt it was my responsibility to help her in ALL ways, that I possibly could. I can hope that I did for the most part a decent job at it.

Although a couple of things fell through the cracks, and as I said years ago, NOW, we have a family "uproar".... that although one member "seems" to not be hurt by what has taken place I feel badly that it has, and even more upset that the other 3rd party is NOT helping, and is acting like a damned toddler, rather than a grown up adult.


I am going to go ahead and publish this although it is not finished... I will finish it and post the rest very soon...