Her husband's disease isn't covered by the VA. So she's sharing his story

I commend Karen for sharing her story and her struggles about her husband. I agree with her points at the end of her story. Some key pieces that are critical and need to take place. I understand her struggle about the cost and the stigma. My Grandma’s cost of care was $4,500.00 a month. Yes four thousand-five hundred a month…The only difference is that my grandma (thankfully) had resources to pay for her care, but had she lasted another five years I was going to have to sell all her assets and then look at putting her in a home with the state because at that point the care she was getting would be denied as I would not have been able to pay. This disease is not only emotionally draining on families but very finically damaging. And the stigma’s are real. I was happy I came across this article to share with my readers. It’s worth a read. And I fully support and commend her for fighting the VA to get the right care her husband needs, deserves and requires.

By: Parker Molloy

“Everybody has to die, but I wanted to die after the kids grow up," Jim Garner says in a video from 2013.

That video, posted to the Daily Press website, was recorded three years after Jim was diagnosed with early-onset Alzheimer's disease. In the two years since, Jim's condition has continued to deteriorate, and he's lost the ability to speak or write.

A 23-year veteran of the Air Force, Jim and his wife Karen hoped the VA would pay for the care he needs.

"And although Jim is a 23-year Air Force veteran and retiree, he does not qualify for any support from the VA that would pay for the care he needs," Karen wrote in a Facebook post about why her family was not celebrating Veterans Day this year.

The Department of Veterans Affairs provides care for Alzheimer's patients — but there are conditions.

Late last week, I spoke with Karen over the phone, and asked why the VA refused care for her husband.

After all, the VA website has this to say about Alzheimer's care:

"Care for Veterans with Alzheimer's or dementia is provided throughout the full range of VA health care services. Depending on the Veteran's needs, services may include home based primary care, homemaker and home health aide, respite, adult day health care, outpatient clinic, inpatient hospital, nursing home, or hospice care. Caregiver support is an essential part of all of these services."

According to Karen, Jim was denied assistance because his diagnosis came after he retired in 2005.

Because Alzheimer's runs in Jim's family, it wasn't considered a service-related disease. And because Jim's diagnosis came after he'd retired in 2005 — and because their household income exceeded the threshold to receive assistance — Karen and Jim are on their own. 

"When Jim and I got married 18 years ago, I envisioned a life of travel, raising our children, and eventually growing old together. Jim is the one growing old, right before my eyes, seemingly aging years in days."

And while that income threshold might make sense for someone without a family to care for, Jim and Karen have two children. Jim's care costs around $4,000 per month. He is no longer able to work, and Karen is in the uncomfortable position of trying to financially support their family and care for her husband at the same time. In a blog post from July 2015, Karen details her experience battling what she calls a "broken system."

Upworthy reached out to the VA for clarification on these requirements but have not heard back.

Karen is tired of fighting the VA, but she refuses to give up — for Jim or anyone else.

She wants to help others with Alzheimer's. It's why she's such an outspoken advocate for Alzheimer's care, having spoken to legislators, conferences, and the media about raising awareness and pushing for additional research around the disease.

"When Jim and I got married 18 years ago, I envisioned a life of travel, raising our children, and eventually growing old together. Jim is the one growing old, right before my eyes, seemingly aging years in days. Our future life we dreamed of isn't going to happen," she wrote in her Facebook post on Veterans Day. "Instead, I have spent our last few years fighting — fighting to get a diagnosis. Fighting to get disability. Fighting for research. Fighting for a cure. Fighting to get financial assistance. Fighting to get quality care from the VA or anyone else who offers it. Fighting to keep my family together and in peace. Fighting to pay for Jim's new home. It has been an exhausting war and I just try to win as many battles as I can while knowing we are far from being done." Stigma keeps a lot of people from opening up about Alzheimer's. Karen wants to change that.

It's part of the reason she's been tracking her family's journey at MissingJim.com over the past two and a half years.

"There are so many people who don't speak up about what it's like dealing with Alzheimer's, and I wanted to fight that stigma," she told me. To her, it's important to share her family's stories, even if they are sad.

Karen has four suggestions to change how we treat Alzheimer's patients.

First and foremost, we need to make sure family and caretakers have the resources they need. As mentioned above, Jim's care currently runs around $4,000 per month (nearly $50,000 per year). That's not something most families can realistically come up with.

Second, we need to simplify dealing with insurance companies or government agencies. Karen detailed the hours spent filling out paperwork and applying for assistance. This problem is not unique to Alzheimer's patients. As anyone who's had to navigate the bureaucracy involved with health care can confirm, it can all be discouraging — if not entirely overwhelming.

Third, we need to get serious about funding research. A report from the Alzheimer's Associationpaints a grim picture for the future of Alzheimer's research. As other diseases such as HIV, stroke, heart disease, breast cancer, and prostate cancer claim fewer lives, Alzheimer's deaths have been on the rise. It's the sixth-leading cause of death in America, and it receives just a fraction of research funding compared to cancer, heart disease, and HIV.

Finally, and this one comes from Jim, himself:

Let's start with that last one, OK? Let's share the stories of people like Jim and Karen. Let's fight stigma.

http://missingjim.com/contact-me/#sthash.A9Jj5JAJ.dpbs

Helpful Classes for Alzheimer's in the Reno Area.

Here are some helpful class scheduled for my Reno, Nevada area.  If your have been recently diagnosed with Alzheimer's or your a caregiver for someone with Alzheimer's, here are some up coming classes.

Living with Alzheimer’s for Caregivers-Middle Stage

Audience: Caregivers

Location: Alzheimer’s Association Northern Nevada  1301 Cordone Avenue, Suite 180, Reno

Date: Thursday December 3, 2015

Time: 9:30am to 11:00am

Living with Alzheimer’s for Caregivers-Middle Stage

Audience: Caregivers

Location: Alzheimer’s Association Northern Nevada  1301 Cordone Avenue, Suite 180, Reno

Date: Thursday December 10, 2015

Time: 9:30am to 11:00am

Living with Alzheimer’s for Caregivers-Middle Stage

Audience: Caregivers

Location: Alzheimer’s Association Northern Nevada  1301 Cordone Avenue, Suite 180, Reno

Date: Thursday December 17, 2015

Time: 9:30am to 11:00am

Early State Partners In Care- Winter 2016

Audience: People with Dementia-Early Stages

Location: Alzheimer’s Association Northern Nevada  1301 Cordone Avenue, Suite 180, Reno

Date: Thursday January 14, 2016

Time: 9:30am to 11:00am

Early State Partners In Care- Winter 2016

Audience: People with Dementia-Early Stages

Location: Alzheimer’s Association Northern Nevada  1301 Cordone Avenue, Suite 180, Reno

Date: Thursday January 21, 2016

Time: 9:30am to 11:00am

Early State Partners In Care- Winter 2016

Audience: People with Dementia-Early Stages

Location: Alzheimer’s Association Northern Nevada  1301 Cordone Avenue, Suite 180, Reno

Date: Thursday January 28, 2016

Time: 9:30am to 11:00am

Early State Partners In Care- Winter 2016

Audience: People with Dementia-Early Stages

Location: Alzheimer’s Association Northern Nevada  1301 Cordone Avenue, Suite 180, Reno

Date: Thursday February  4, 2016

Time: 9:30am to 11:00am

Early State Partners In Care- Winter 2016

Audience: People with Dementia-Early Stages

Location: Alzheimer’s Association Northern Nevada  1301 Cordone Avenue, Suite 180, Reno

Date: Thursday February  11, 2016

Time: 9:30am to 11:00am

Early State Partners In Care- Winter 2016

Audience: People with Dementia-Early Stages

Location: Alzheimer’s Association Northern Nevada  1301 Cordone Avenue, Suite 180, Reno

Date: Thursday February  18, 2016

Time: 9:30am to 11:00am

Meeting Samuel L. Jackson, No Snakes on This Plane

Samuel L. Jackson
At Honolulu Airport
11-12-2015
Copyright: BMW Photography

Samuel L. Jackson 
At Honolulu Airport 
11-12-2015
Copyright: BMW Photography

Thursday November 12, I was standing in a very long crazy security line at the Honolulu airport, wondering if I was going to make my flight that was headed for Los Angeles. All the sudden I hear a bunch of commotion. I look up and standing in the Pre TSA line is Samuel L. Jackson (the actor). He is being funny and is quiet loud because everyone is taking photos of him on their electronic devices. He says, “Well Samuel L. Jackson has to fly too!” and mentions something about his original plane not working. I snapped a picture of him while he stood in line. As I am standing there I thought to myself, he just might happen to be on the Los Angeles flight too….(and how cool would that be, Samuel L. Jackson on the same flight as me? Hopefully without snakes on a plane), and not to mention his capital one card needs to step up and get him a better seat.

Samuel L. Jackson 
At Honolulu Airport 
11-12-2015
Copyright: BMW Photography

I arrived at my airport gate ten minutes later and there he was sitting with his assistant being very cool.  People in the airport gate are noticing him, but no one is saying much.  Ten minutes later a little girl comes over to Samuel and asks him if he is one of the avenger’s. He replies “Maybe.”  She than asks to take a photo with him. He says “What if I say no?”. She doesn’t reply because at her age I am sure she is totally star struck. She turns and faces her mom, while Samuel stays sitting in his seat, the mother takes a couple photos via iPhone.  Now this is getting more airport attention.  When the little girl is done a little boy comes over and asks to take a photo too. Samuel says “I guess the photo booth is now open!”.  Everyone laughs. Part of me felt bad for Samuel, as he is just another human that is traveling and trying to get to Los Angeles like the rest of us; however all eyes are on him.  Once the little boy leaves, a lady talking on her cell phone comes over to Samuel and wants him to talk to her husband. This goes on for a good amount of time, and everyone gets a kick out of it.

Samuel L. Jackson 
At Honolulu Airport 
11-12-2015
Copyright:BMW Photography

As me and all the passengers continue to wait, a flight crew member makes an announcement on the loud speaker. Our 12pm departing flight is now delayed by 4 hours with a few selected options to choose from.  A new gate for a later flight to Los Angeles is announced.  Most people leave and head over to the new gate.  Since I had been sitting on the floor at the packed airport gate, I finally get up to sit down, but it just happens to be right across from Mr. Jackson. We all continue to listen to the overhead announcements.  Once they are off the loud speaker I look over at Samuel and I ask him “Are you going to stay on this flight or try to catch another one?” He’s very kind and replies “I don’t know, we are looking to see if I can get on another plane, I have to get to Los Angeles today, because I have to be somewhere at 9am tomorrow.”

My Platform Table #ENDALZ
Copyright: BMW Photography

Winning Platform
Woman of Achievement 2015
Copyright: BMW Photography
#ENDALZ #BEVERLYJEAN #REMEMBERMYPHOTO

I say to him “Bummer you were supposed to bring me good luck for my competition this weekend in Los Angeles”. He says “What competition?” Being the pageant queen I am I whip out my crown box and sash. “Well I am in a national pageant competition his weekend. It’s called Woman of Achievement and it’s a program where I spend a lot of time working on my platform which is Alzheimer’s. I am an advocate for my state and a volunteer.” He says to me, “My mother died from Alzheimer’s”.  (At this point I am almost speechless! Because here I am talking to Samuel L. Jackson and he is telling me his mother died from Alzheimer’s, a cause that is so dear to my heart after losing my grandma to her 10 year battle to Alzheimer's.) I tell him I am so sorry for his loss.  I recall and say “That is right you do a lot of advocacy work or donate your time, and you’re at a couple of the major fundraisers for Alzheimer’s”. He says “Yes”. I asked him if we can get a photo together with me wearing my crown and sash. He says “Sure get dressed darling, I will come stand next to you.”. His assistant was kind enough to take several photos on my iPhone, and asks me to check them. I tell him “I am pretty sure they are all great.”. Samuel says to me “Good luck darling!” and I thank him and tell him good luck getting a new flight and that it was great to meeting with him.

Winning Platform
Woman of Achievement 2015
Copyright: BMW Photography

Talking about Alzheimer's
Woman of Achievement 2015
Copyright:BMW Photography

This moment was so powerful for me because not only did I meet Samuel L. Jackson, but he had the connection about this horrific disease, Alzheimer's. This just reminds me how many people are affected by Alzheimer’s and how we need to continue to talk about it. I truly left Hawaii feeling empowered to keep speaking up, to keep talking to others about the diseases and to keep asking for money to fight the cause so that one day we can to find a cure.

I hope this inspires all of you to keep talking to individuals, to keep asking for donations and to keep shedding light on this diseases by sharing your own story. You never know who you will meet, and how they may have also been impacted by Alzheimer’s.

Winning Platform
Woman of Achievement 2015
Copyright: BMW Photography

Interesting Fact:  "Samuel L. Jackson" In June 2013, Jackson launched a joint campaign with the charity Prizeo in an effort to raise money to fight Alzheimer's disease. As part of the campaign, he recited various fan-written monologues and a popular scene from the AMC series Breaking Bad." Reference Wikipedia https://en.wikipedia.org/wiki/Samuel_L._Jackson

Woman of Achievement Delegates 2015

P.S. I won 1^st place Platform out of a group of 31 woman. This is the only all cash award for the pageant 

#ENDALZ #BEVERLYJEAN #REMEMBERMYPHOTO #WIPEOUTALZ

Human 'mini brains' grown in labs may help solve cancer, autism, Alzheimer's

By Thom Patterson

(CNN)A Harvard medical pioneer calls it "astounding" — an "incredible achievement" and a "quantum leap forward" in the battle against cancer, autism, Parkinson's and Alzheimer's.

What's going on? Scientists at Ohio State University saythey've figured out a way to grow the genetic equivalent of a nearly complete embryonic human brain. 

Technically, they're not quite "brains." They're called brain organoids —  pieces of human tissue grown in petri dishes from skin cells. 

These little blobs of tissue, 2-3 millimeters long, could help researchers test drugs and other treatments that may help prevent, fight and maybe even cure some of the most devastating disorders and diseases of our time. 

In addition to Parkinson's disease, autism and Alzheimer's disease, they could also lead to unlocking the mysteries of schizophrenia, epilepsy, traumatic brain injuries and post-traumatic stress disorder. Millions of people suffer from all these disorders and diseases worldwide.

"The idea of taking skin cells,reverting them back to a basic stage of development and then teaching them how to turn into the cells that make up the brain is something we have been dreaming about for some time," said CNN Chief Medical Correspondent Dr. Sanjay Gupta. "It is exponentially closer to reality now. Furthermore, the idea of using these 'mini brains' as a testing ground for therapies could help doctors figure out the best treatments for individual patients as opposed to the 'one size fits all' approach that is often used nowadays."

Scientists have been making brain tissue organoids in the lab for less than a decade.

Japanese scientists were among the first to prompt cells from mice and humans to form "layered balls reminiscent" of a part of the brain called the cerebral cortex, according to the science journal, Nature. In 2011, Madeline Lancaster, a scientist a the Institute of Molecular Biotechnology in Vienna, was able to grow an embryonic brain.

Ohio State biomedical researcher Rene Anand said his team's work is different because "our organoids have most of the brain parts."

"I'll give you one example: If you want to study Parkinson's, you need the mid-brain. The best I can tell from all published research on organoids is they don't have the mid-brain. We have the mid-brain we are already moving toward trying to study them."

Anand said he has grown organoids that include 98% of cells that exist in a brain of a human fetus at five weeks. 

"I think it took all of us by surprise," Dr. Rudolph Tanzi — an Alzheimer's research pioneer at Harvard told CNN. "The results were absolutely astounding ... it's an incredible achievement."

Creating a fetal brain that includes so many different types of brain cells amounts to a "quantum leap forward," he said.  Tanzi co-discovered all three genes that cause early-onset familial Alzheimer's,according to his Harvard biography.

Anand said using the breakthrough to learn more about Alzheimer's is a "high priority" for his team. 

Despite all the excitement, Anand is quick to point out that the project is still at a very early stage. "The sooner we commercialize it and make a model available, the sooner everybody else can jump in and use it to solve these problems." Brain organoids may help researchers find key solutions to some sub-types of autism within 10 years, Anand said. 

"Right now, it's like we're climbing Mount Everest and we're at Base Camp One," Anand said. "You know, you have to stop, get your oxygen together, then move up to the next step. So, we've still got a ways to go."

As you might expect, growing human brain organoids poses a lot of head-scratching questions.

Here are five big ones:

1. Does this mean scientists could grow a miniature version of your "brain?"

Sort of. If a lab technician used some of your skin cells, they could grow an embryonic brain organic that would have your genetic material. Could that brain organoid be developed into a fully grown brain? No, that's not possible yet. A fully grown brain would need a vascular system and other parts before it could meet the official definition of a brain. "They are not capable of growing beyond where they are," said Anand. "We have no intention of going beyond that."

2. Exactly how would brain organoids contribute to new treatments? 

Scientists would use them to mimic human brains deteriorating from Alzheimer's or Parkinson's and then study how they react to innovative treatments or newly developed drugs. "You still have to find a way to accelerate the aging of that brain, the pathology, to mimic a disease like Alzheimer's or Parkinson's," said Tanzi.

3. Is it possible that brain organoids are conscious? 

No, said Tanzi. Because these tissues don't have any input. "The brain doesn't work alone. The brain needs sensory input. The brain in a dish is not getting sensory input. We depend on our limited sensory system — our five senses — to provide input to the brain. The brain interprets that information and integrates it. And then we're putting everything we experience in context based on the information that's already stored in our brains through synapse."

4. Theoretically, could this research lead to a future with artificially intelligent machines that have humanlike brains? 

It's not out of the realm of possibility, Tanzi said. "If somebody someday figures out how to put a brain into an AI that has sensory input — now you're creating AI hybrids with organic brains. Then, that's a whole different story. Then, you're talking about what's been covered in science fiction movies. But I would say it's very far away, if at all."

5. How long will it take for brain organoid research to lead to breakthroughs?

"You need to get this system into hundreds of labs studying these different brain diseases and let everybody take a shot at it. No one lab's gonna do it," said Tanzi. "We can say 10 years, but if you put that brain system and replicate it in the right lab, that could come down to five years. You need experts who know each disease, working in that system."

Robin Williams' widow: 'No one could have done anything more'

One of my favorite actors. The one and only Robin Williams. I was pretty shocked last year when I heard about his suicide; however reading about his diagnoses is a fresh reminder as to why we need to be talking about all forms of Dementia and break the stigmas and shame that individuals feel. Even individual in the lime light have life struggles, and I am happy to hear his wife speak up about the diagnosis and how her and her husband both struggled together before he took his life. My heart truly goes out to all of his family and friends. Susan! Thank you for sharing your story. 

By: Devan Coggan

Robin Williams' widow, Susan, has given her first interviews since her husband's death, opening up about his mental health and saying she doesn't blame him "one bit."

In an interview with ABC News' Amy Robach, which aired Tuesday on Good Morning America, Susan Williams said that in addition to his battle with depression and his recent diagnosis of Parkinson's disease, he had become increasingly paranoid and anxious, and in the week before his death, his doctors recommended that he check into a facility for neurocognitive testing.

She added that he was holding it together as best as he could. "But the last month he could not. It was like the dam broke," Williams said.

A report after his death also revealed that Robin Williams had Lewy body dementia, a brain condition that can cause mood fluctuations, hallucinations, and impaired motor function. Frequently misdiagnosed, it's one of the most common forms of neurodegenerative dementia after Alzheimer's. In an interview with People, Williams said her husband's brain disease was only detected after his death, and she hopes to raise awareness of Lewy body dementia.

"People in passing ... would say to me, 'God, I wish I had done something more for him. If only I had called him," Williams told Robach. "And I'm thinking, 'No one could have done anything more for Robin.' I just want everyone to know that. Everyone did the very best they could. This disease is like a sea monster with 50 tentacles of symptoms that show when they want. It's chemical warfare in the brain. And we can't find it until someone dies definitively. There is no cure."

The 63-year-old actor died by suicide on Aug. 11, 2014. During the interview, Robach asked Williams whether her husband's death may have been his way of taking back control.

"In my opinion, oh yeah," she said. "I mean, there are many reasons. Believe me, I've thought about this. Of what was going on in his mind, what made him ultimately commit... you know, to do that act. And I think he was just saying no. And I don't blame him one bit. I don't blame him one bit."

Watch a clip of Williams' interview with Robach below, and see the full interview at Yahoo! News. For more on her husband's battle with Lewy body dementia, read Williams' interview at People.