Double Donate WITH LOVE: $90,000 Matching Gift to The AFTD.org

The day after I talked with a group of friends about how Lydia had wandered from her skilled nursing facility right after our last get together in December, they called to tell us they thought Lydia had a grand mal seizure and fallen, hitting her face on the edge of the bed and they sent her to the hospital to get CT scans and other tests. She was admitted to the hospital from the ER to get the seizures under better control.

Lydia–my brilliant and multi-lingual role model–earned a degree in chemistry and then an MBA in finance and marketing. She worked in Wealth Management in Beverley Hills, was active in professional marketing and financial associations, her alumni groups, fundraisers, Toastmasters, etc.

With her great love of art, culture and adventure, she had traveled around to many countries solo, but unfortunately, this disease has robbed her ability to process language both incoming and outbound. One often-misdiagnosed neurodegenerative disease, and her dreams of life are dashed.

It’s an education for people every single time we meet a medical professional. It’s often diagnosed as depression, bi-polar, schizophrenia, Alzheimer’s, mid-life crisis are often and the meds for those may hurt instead of helping in addition to wasting valuable time.

I want to help people avoid having to go through the hell Lydia has.

Even at this hospital, the 14 nurses and doctors were unfamiliar with the disease. This is not the first time we’ve seen that happen in the hospitals or other medical facilities she has been to, even after all the test results we take to EVERY facility when she gets shuffled through our “fractured medical system.”

Lydia’s diagnosing doctor is the chairman of TheAFTD.org Medical Advisory Council, and other doctors still don’t take advantage of his team’s experience and expertise.

Please help me help others avoid this terrible odyssey by raising awareness of this disease. Every little bit helps. Please spread the word to your networks of the AFTD’s 2017 With Love campaign. Any donation helps (especially with a $90,000 matching gift), but I really want to RAISE AWARENESS, and that’s how you can help.

For more info about Frontotemporal Degenration, please see TheAFTD.org

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With sincere thanks,
Karine

Lydia’s Misadventure Today

Today, Lydia went missing from the secured facility that she’s been in since her last hospitalization around Easter of this year. When I got the call from the facility, my heart sank to the floor. I had reached out to Nancy’s husband (nancyismissing.blogspot.com) in October after reading about her wandering off, saying “stupid” like Lydia says, and seeing the LA Times full-page ad they had run on a Satruday. I had told him to check the psychiatric wards in the area, because although Lydia has FTD (Frontotemporal Degeneration) and was diagnosed in 2014 by the current Chair of theAFTD.org ‘s Medical Advisory Council,
A) most doctors don’t know what FTD is, and
B) they misdiagnose it as schizophrenia, bipolar disorder, depression, Alzheimer’s, or they think the patient is on drugs or alcohol.

I had gotten a few photos of a potential “Nancy” texted to me at the beginning of December, and because Lydia and Nancy are the same age, I have a background worry about Nancy.

I’m sure you can imagine the shock I had when I got the phone call this AM. I called and asked Nancy’s husband if he had any advice because Lydia had slipped out of the facility at 7 AM and it was 9 AM–who knows how much ground she could have covered in that time–other than the seizures, aphasia and FTD, Lydia was in pretty good health and walked all day in the facility. Kirk told me to get the LA Sheriff and search dogs involved right away and get the businesses in the area with cameras not to delete their videos. I got our mom, Lydia’s medical records, and all the photos of Lydia’s clothes we’ve dropped off to the facility to aid in the description for the police and any volunteers and started driving from Ventura County.

In the car, we called 911 and were connected with the Malibu Sheriff station which then sent me over to the North Hollywood station. The facility staff was there, and one of the officers said they thought they may have found Lydia. The nearby Burbank Police had taken her to the hospital. The facility staff texted the address of the hospital, and we met them there with other members of the staff. Once we got there and told the ER doctor she had FTD, they canceled some of the tests they were thinking of running, but she hadn’t eaten yet or had her AM meds. They tested for a UTI, but she had just finished taking antibiotics for the only one she’s had at this facility. Her anti-seizure meds were in the correct range.

The ER doctor and staff were fantastic EVEN THOUGH THEY’D NEVER HEARD OF FTD, but if we weren’t involved, she would have been in the psychiatric ward of the hospital, which is where she was initially placed. On a happy note, she was transferred back to the facility, and we are all breathing sighs of relief.

Lessons learned:
1. It only takes a second for a confused person to get lost.
2. The Police can be very helpful and the hospitals are trying to do the best they can with limited information from a patient who can’t advocate for herself.
3. Ambulatory dementia patients are often misdiagnosed as psychiatric patients.
4. Lydia was found near a dog park from what we’ve been able to gather. She likes animals and as best we can tell, was saying the name of her beloved cat, repeatedly.
5. When dehydrated, dementia patients are even more confused. They may not be able to let you know they are hot, cold, thirsty, their feet hurt, are wet, need to go to the bathroom, etc. and may become agitated and lash out because we don’t understand them and they are angry because we aren’t helping they get what they need.
6. Volunteering efforts like what the people of nancyismissing.blogspot.com are doing are amazing and help even when they might not think they are. You are all making a difference!

I’m amazed by all the smart things they are doing and hope Nancy can be returned safely home like Lydia was to her skilled nursing facility.

The Holidays with Lydia

319834176_72e539770a_mThe facility where she is in hospice had a holiday party for all the residents. Initially, we hadn’t planned to go, but one of her caregivers the Sunday before encouraged us to come, so we reversed our RSVP in time and went.

It was the best family gathering we had had since the hospital right after she got out of the ICU in March. She was a little agitated at first, but after one of the caregivers took her to the restroom past the waiting crowd, she settled down and was able to enjoy the dinner and dessert.

We were able to observe in the dining hall how good the caregivers were with everyone. Truly a difficult job, but they were caring, helpful and showed genuine, cheerful attitudes, even with difficult residents.

We were so glad that her caregiver encouraged us to come. She said the family dinner event was nice. The truth is, it was more than that. Way more.

We are so grateful that she’s with these caregivers.

Caregiving is a very difficult job, but these people are able to figure out how to handle so many unique situations, they are the unsung heroes in the medical field. In the past year, we’ve seen some apathetic caregivers, openly hostile caregivers who need to be doing something else for a living, and a few good ones.

This place she’s in now has many good caregivers, and we were able to see them in action with a huge room of tables filled with people and their families. Not all are sick like Lyda–most are in the assisted living section–but you could see their attitudes with everyone, and they weren’t faking it.

This past year has been a difficult one for our entire family, but especially for Lydia. It was good to see her get to enjoy herself a little like she used to, and to have a nice dinner with her family. I think that was a huge relief for our parents, too, to see her calm, and to be a little more like what she was before this illness started hurting her so much.

Thanks for everyone’s support this year.

Giving Tuesday: Robin Williams’ Lewy Body Dementia Diagnosis

Please help spread the word on “Giving Tuesday.” Like make it go viral in a good way….

I saw this article on the cover of People Magazine when I was at the dentist yesterday:  http://www.people.com/article/robin-williams-committed-facility-suicide-susan-williams

While I normally don’t read People magazine, the Robin Williams photo on the cover did catch my eye, since initially when I had heard about his death, I thought I had read about him having Parkinson’s. So I was curious. And sad.

When I was looking around to find out about TheAFTD.org’s upcoming events, I saw that today was the start of the conference:

International Dementia with Lewy Bodies Conference, Fort Lauderdale, Florida

Held in the United States for the first time this year, this conference focuses on dementia with Lewy bodies (DLB), also known as Lewy body dementia, which includes DLB and Parkinson’s disease with dementia. A particular focus of the conference this year (Dec. 1-4) is on the prodromal aspects of DLB.  http://www.theaftd.org/4conferences/international-dementia-with-lewy-bodies-conference-fort-lauderdale-florida

 

While I have said there is no celebrity for increasing awareness for FTD like Lou Gehrig and ALS or Michael J. Fox and Parkinson’s or Ronald Reagan and Alzheimer’s, there is a documentary Looks Like Laury, Sounds Like Laury that will be coming up again in one week.

http://worldchannel.org/programs/episode/arf-s3-e310-looks-laury-sounds-laury/

On TV:  Tuesday December 08, 2015

I’ve seen this documentary with our parents. This stylish Laury looks a lot like my sister Lydia, and it was helpful since we now have a little bit of a roadmap from this spring as opposed to just being blind.

Laurydocumentarychat

Another irony was when I was looking to get the correct name of the actress on Orange is the New Black who worked on this documentary, I again went to People Magazine and found this:

http://www.people.com/article/looks-like-laury-sacks-documentary-early-onset-dementia

People Magazine seems to be doing a better job of getting the word out about this than the bigger media, like when:

Dr. Sanjay Gupta (CNN.com) mis-informed about FTD

anevolutionoflove.blogspot.com/…/dr-sanjayguptacnncom-mis-inform…

Apr 23, 2009 – He gave a response to a question regarding FTD by discussing Alzheimer’s disease – he did not seem to know about the diagnosis of FTD….

CNNGuptaFTDerror

Like one of my sister’s doctor said this spring when I asked if he knew about FTD, he said “I read about it in medical school.” Maybe Dr. Gupta knows more about FTD now.

 

 

 

Latest on Lydia

happy-birthday-72160_1280We saw her hospice doctor over the weekend. She said Lydia seemed stable with maybe a slight decline since 2 months ago. We need to get her feet looked at by the podiatrist again, because “she’s like an athlete, she walks fast and all day long!” according to her doctor who got to see her in action. Yesterday was her birthday, so we took cards, gifts and cake for all her fellow residents.

Ironically, I got an email from theAFTD.org saying that there was an ad placed in The New Yorker this week on her birthday. It’s the one about misdiagnoses. Truly ironic.

aftdad

International Food For Thought Week Starts 10/4

FfTlogo

RADNOR, Pa., Sept. 29, 2015 /PRNewswire-USNewswire/ — Many worthy causes ask us to run or walk a 5K to raise awareness of a medical condition, but not the Food for Thought campaign from The Association for Frontotemporal Degeneration (AFTD).  Instead of working up a sweat—or freezing under ice buckets—participants are invited to share some food and spread the word about the life-altering brain disease Frontotemporal Degeneration (FTD).

“FTD is devastating for those affected. Yet it is little known and it is poorly understood,” said Susan L-J Dickinson, AFTD Executive Director.  “It can take years for families to get a correct diagnosis.”

FTD is the most prevalent form of dementia for adults under age 60. It is frequently confused with Alzheimer’s, Parkinson’s, and certain psychiatric disorders. Misdiagnosis is costly for patients and the medical community.

In its third year, the Food for Thought campaign is gaining momentum, with events now planned in 37 U.S. states. The goal is to raise funds to fight FTD, while raising awareness during World FTD Awareness Week from October 4-11, 2015.

“FTD affects a person’s executive functioning and social skills, and eventually prevents human connection,” said Dickinson. “Sharing food brings families and communities together,” she added, “and these events foster a sense of connection for people facing an isolating disease.”

-To support the campaign, search this list of events in your area. Please share with your friends on Facebook.

World FTD Awareness Week (October 4-11) – From conferences in Australia and The Netherlands, to a concert and art gallery in Spain, to a citywide proclamation in Canada, constituents around the world are making their voices heard in the fight against FTD. Click here for ways to join this crucial week for awareness!

Neighbors

A couple of weeks ago, a neighbor asked me “Who is taking care of you? You are taking care of your whole family.”

Which is only sort of true (we are all taking care of each other, from across the world and here locally). But without hesitation, I answered Diana. She’s my neighbor and makes sure I get to vent almost every single day.

Unfortunately, this hero will not be at the event Sunday. Fortunately, she’s celebrating a long-planned special birthday with friends this weekend!

Another hero has contributed to the silent auction and is another huge source of moral support. Plus, I have all my friends on Sunday night, like Margy, Judy, Peter and the rest of our group who have helped with Lydia and with the event. It’s through Lelah’s Sunday night group that I met Kelly’s Lot. Couldn’t do it without you all–thank you.

That’s one of the problems with this disease. It strikes people in the prime of their lives, and most people have children AND elderly parents they are caring for. Then, if they are trying to hide the disease from their employer and lose their job, they lose very important benefits like disability insurance. In the 2008 financial disaster, Lydia lost her job and her health insurance, which delayed diagnosis, let alone treatment.

My sister’s hospice doctor said very smart people like my sister develop ways to compensate for what they are losing and are able to hide it from their families for a long time. Lydia would say she was stressed at work, but couldn’t say what was causing that stress. Others with the disease have said they have made inexplicable mistakes at work.

If you don’t know what’s wrong, it can be a very lonely place. I’m trying to help others avoid the hell Lydia’s gone through and my family along with her. My family and I are fortunate to have such good friends and neighbors. Thanks, friends!