(Un)Happy Anniversary and Interventions

June 1 marks the six-year anniversary of the real start of Lydia’s journey with FTD. She was not diagnosed until a couple of years later, but what started this journey was a car accident she had on this date.
In a 3-months-new car, Lydia got into an accident with a large trash pickup truck. I don’t think the airbag deployed, but she may have had a seizure or the impaired judgment of FTD that caused her to go through an intersection when it was not safe. Luckily, nobody was in the crosswalk and the trash truck was so huge that nothing happened to it. Unfortunately, Lydia’s brand-new car was essentially totaled because every panel of the car was damaged on the passenger side, and I think the frame, too.
What was alarming was that afterwards she could not accurately describe what had happened in the car accident. When I asked her was the trash truck going left in the intersection, she said yes. Then we talked a little more, and the story changed. I could not get a clear sense of whether she was going straight, the trash truck was going straight, the light was green, the light was red, the light was yellow, the truck was going straight, she was going left. Who knew? It was alarming to me and our mom, and we thought she shouldn’t be driving anymore. Thankfully, no one was killed or maimed.
She had an appointment with a neurologist a couple of weeks later. This neurologist was a new doctor to us. Our whole family went with Lydia to the doctor, who thought it would be better for us to tell the DMV that Lydia was giving up her license voluntarily, because if she was able to get better, it would be easier for Lydia to get her license back than if the DMV took away the license.
The people with Primary Progressive Aphasia tend to live the longest with the disease. Plus, FTD was less known at the time. It took about two years to get the diagnosis, after numerous visits to rule out B12 deficiency, spinal tap, thyroid, mercury and lead poisoning, hormone imbalance, etc. Too bad more of that couldn’t have been at the same time, but Lydia was sans “health insurance” at the time of this horror show, thanks to the global bank implosion. From time to time, she still mutters “stupidest bank,” which is still getting into trouble with the regulators, even this year. Even though she didn’t work on the banking side, rather on the Wealth Management/Trust/Private Client blah blah blah side. They still try to do things to look like they are good corporate citizens, but they have ruined an over-100-year-old reputation with their criminal greed.

Lydias Fidget quilt BackLydias Fidget Quilt back

The other thing I learned recently after my last post was that there is something called a “fidget quilt” for dementia patients. So mom and I went to the fabric store and picked out things with meaning to Lydia and bright colors like her sensory toys and texture. I had been told that things with texture and color helped with making new brain connections when Lydia was in her second rehab center, but due to something stupid that happened with her stuffed animal, she was transferred to the hospital, and they didn’t accept her back. Then she went to the really bad hospital because the first one didn’t have any available beds. There, she got a horrible black eye that looked like she had been punched in the eye by a boxer. Then that doctor gave her 15 times the dose of the medication of what she should have been on because he ignored all her medical records, us and the actual diagnosis by a specialist in FTD. She then had to be detoxed from that in yet another hospital. That guy had a lot of negative reviews online…I can’t imagine why.

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I think I found the #endFTD theme song

It’s Kelly’s birthday today, so go to Kelly’s Lot and get the album from her store.
Happy Birthday, Kelly! And thank you to all at Kelly’s Lot for helping to raise money for theAFTD.org and awareness about FTD.

Spread the word and #endFTD!

This entry was posted on March 26, 2018, in Families.

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