Mushroom Lasagna 2018 AFTD Food For Thought Campaign #endFTD

Lydia’s mushroom lasagna is similar, but has tomatoes and herbs. In honor of this year’s AFTD Food For Thought campaign, I will be posting some of Lydia’s favorite recipes. She liked cooking, watching Anthony Bourdain, the Cooking Channel, the Food Network, Gourmet Magazine, Saveur, Martha Stewart and many, many more. I have her cookbook collection at my house, plus there is a stash of hers at our parents’ house, too.

mushroom lasagne

Mushroom Lasagna

Ingredients

  • Kosher salt
  • Good olive oil
  • 3/4 pound dried lasagna noodles
  • 4 cups whole milk
  • 12 tablespoons (11/2 sticks) unsalted butter, divided
  • 1/2 cup all-purpose flour
  • 1 teaspoon freshly ground black pepper
  • 1 teaspoon ground nutmeg
  • 1 1/2 pounds portobello mushrooms
  • 1 cup freshly ground Parmesan

Directions

Preheat the oven to 375 degrees F.

Bring a large pot of water to a boil with 1 tablespoon salt and a splash of oil. Add the lasagna noodles and cook for 10 minutes, stirring occasionally. Drain and set aside.

See the rest of the directions from Ina Garten, one of Lydia’s favorites on the Food Network at https://www.foodnetwork.com/recipes/ina-garten/portobello-mushroom-lasagna-recipe-1946968

Join us for a gourmet food and wine event at
Grapes & Hops in Downtown Ventura at 454 E. Main Street, plus music by Kelly’s Lot and Friends

September 27, 2018 from 6:00 to 9:00 PM

Tickets are $50/person to have a gourmet food buffet and a glass of
white, red, or sparkling wine from the award-winning Grapes & Hops.

Acoustic music from Kelly’s Lot and Friends.
Kelly’s latest: ‘Rescue’ made it on the Roots Music Report Charts in 2018.
#1 Soul Blues Song, #2 Soul Blues Album, #7 California Album

Tickets available for purchase on https://lydiasftdhouse.com/events/
or on the right side bar of this site.

 

Cheese Borags 2018 AFTD Food For Thought Campaign #endFTD

Cheese Borags

This is one of both of our favorite foods. It can be made with filo dough or puff pastry. in a word: YUM! We make it with feta cheese.

In honor of this year’s AFTD Food For Thought campaign, I will be posting some of Lydia’s favorite recipes. She liked cooking, watching Anthony Bourdain, the Cooking Channel, the Food Network, Gourmet Magazine, Saveur, Martha Stewart and many, many more. I have her cookbook collection at my house, plus there is a stash of hers at our parents’ house, too.

borag triangles

Classic Cheese Borags

Ingredients
8 – oz. Monterey Jack cheese, shredded (Muenster cheese can also be used)
1 – 15 oz. container ricotta cheese
4 oz. feta cheese, crumbled
1 egg, slightly beaten

1- 1 lb. pkg. Fillo dough, thawed

Melted butter, about 1/2 stick

Filling Directions:

1. In a bowl, combine the Monterey Jack, ricotta, and feta cheeses with the beaten egg, blending well.

See the rest of the directions at http://www.thearmeniankitchen.com/2009/04/borag-bereg-boregthey-all-spell.html

Join us for a gourmet food and wine event at
Grapes & Hops in Downtown Ventura at 454 E. Main Street, plus music by Kelly’s Lot and Friends

September 27, 2018 from 6:00 to 9:00 PM

Tickets are $50/person to have a gourmet food buffet and a glass of
white, red, or sparkling wine from the award-winning Grapes & Hops.

Acoustic music from Kelly’s Lot and Friends.
Kelly’s latest: ‘Rescue’ made it on the Roots Music Report Charts in 2018.
#1 Soul Blues Song, #2 Soul Blues Album, #7 California Album

Tickets available for purchase on https://lydiasftdhouse.com/events/
or on the right side bar of this site.

Thank you to our generous supporters for donating to AFTD.

2018 AFTD Food For Thought Campaign

Even though our mom is going through chemo again (like last fall), I’ve decided to hold an event that promises to be fun with the help of some very generous women: the owner of Grapes & Hops and Kelly of Kelly’s Lot. A lot has happened in terms of Lydia’s condition since about the middle of October last year. In a weird coincidence, one of the people who works as a therapist at Lydia’s nursing home who is also named Lydia, told me a few weeks ago that her brother in New Jersey was also diagnosed with FTD, but the behavioral variant instead of the language variant that Lydia has. To me, this means that this disease is more common than we think. How many people named Lydia are there out there? And how is it that two people that I know who are building contractors both have relatives who have FTD? I think that it is so misdiagnosed that the numbers are undercounted.

FoodForThought2018
Help me raise awareness and money for the Association for Frontotemporal Degeneration by clicking on the secure links to the right. If you can’t attend the event, I would appreciate it if you could make a donation through the direct link. If you can make it to the event on September 27th to hear Kelly’s Lot and Friends play, please buy a ticket so that the restaurant can be sure to have enough food. If you cannot attend but still want to purchase bottles of wine, please help support the very generous owner of Grapes & Hops. Many of her regular customers lost their homes in the Thomas Fire last year. While they have been scrambling to rebuild their lives after that horrible fire, they have been unable to come to Grapes & Hops as they’ve scattered to find housing and rebuild. She has a great collection of wines that would make great gifts for the upcoming holidays, so buy cases of wine and make your Thanksgiving and Holiday gatherings taste even better with one of her selections. It also makes great gifts for the holidays or even corporate gifts.
Grapes & Hops
kellyslot

(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.

Continue reading

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

Share this with the button below Facebook.
If you like tweeting, there’s a button for that below, too.
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!

Took Lydia to the Hospice Doctor

Yesterday, we took Lydia to the actual doctor’s office. She knows she’s sick and can’t drive or read, and it took two of her caregivers, our mom and me to get her into the car. She was very frustrated, and I wasn’t sure we were going to make it and was on the phone, texting and calling her doctor before we got out of where she lives. But with the second caregiver, we were able to do it.

She gets calmer in the car while we are driving for some reason, and I would take her to Barnes and Nobel weekly while she was living with our parents. But in between two hospital visits in September 2014, when we were in Target, I pointed out the Cat in the Hat book to her, and I think then she realized she cannot read any more.

The primary progressive aphasia part of the FTD that she has wasn’t diagnosed until around February 2014, and makes it hard for her to communicate. When we got into the doctor’s office and into the treatment room, it took about 15 minutes for us to get her to sit on the treatment table so she could be examined properly and then treated. And this was after she’d been given two meds in the treatment room.

After she was seated and calmer, she actually said some things that had us smiling and laughing, but wow, what a hard road to get there. Mom and I both needed a drink after we did it the first time, and I’ve never heard Mom say she needed a drink. Driving Lydia that time a couple of months ago was the scariest thing I’ve been through since I worked at Wall Street and Broad, across from the New York Stock Exchange in September 11, 2001.

No group for FTD in Ventura County

I learned from someone today who contacted me through this site that there used to be an FTD group in Camarillo until the local Alzheimer’s group stopped it–I’m not sure why. That’s unfortunate for people who have the disease and their families. When I asked my sister’s hospice company for a list of support groups, the only one for FTD was in Riverside County, which is on the other side of the state from here–and California is a big state.

This spring when we were looking for places where Lydia could live and get the appropriate care, we learned from the social workers in the hospitals that if she were a drug addict or an alcoholic, there were many options available. But because she’s neither and younger than 60, she falls through the cracks of our medical and care system.

She lost her job at Wells Fargo in the 2008 financial disaster, then the next trust company she went to work for got merged into a bigger bank, eliminating her position. Thus, like many others at the time, she moved in with our parents to save money. The ACA was not yet in effect, so her medical care was the bare minimum she could afford to pay, essentially out of pocket.

In the meantime, after a long evaluation, the state-appointed doctor recommended her for complete disability. The final decision is by the state, and he could not tell us the diagnosis.

After she had her first seizure–just 2 days before she got onto Medicare because now she was considered completely disabled–the neurologists said for her to stop taking a certain medication. However, the diagnosis wasn’t revealed to us by whoever evaluated her to get her onto Medicare and Social Security Disability, so we didn’t even know what we were dealing with until she finally got an appointment to be seen by a team of doctors at UCLA.

But these weren’t her treating doctors, and the local doctors she was seeing were overwhelmed with others in the Ventura County medical system. And one of her specialist doctors told her to get off the drug by tapering off in only 2 weeks. That caused also huge problems for her and my aging parents, which was awful.

This is part of the reason why I have started this blog and am hosting this FTD awareness event on September 20,2015, because people who are going through this are basically thrown to the wolves. They don’t deserve that. They have been valuable, educated, contributing members of society, have families, and deserve to be treated better than “go flounder on your own.”

 

Important Info for Family Members

Something to keep in mind for other families with dementia diseases and big behavior changes:

Saturday, my mom and I met Lydia’s hospice doctor before and after she saw Lydia. When we talked with her afterwards, I indicated that I could always tell when something seriously was going wrong for Lydia when she would lash out at me. One of the things her doctor said was that when someone’s behavior changes suddenly like that, that is an indicator of an infection. Sometimes they won’t show an elevated temperature, and you’ll have to wait to get a blood test or a urinalysis back, but in the meantime the person is suffering, so you almost need to treat for infection first and then find out afterwards through those two tests.

The last time she was sick, she was dehydrated and fell, AND had a urinary tract infection (UTI). She looked like she was getting better, and the 12 hours of one-on-one nursing ended, but then she fell again the next day, hitting her head and got a scrape above her eye. They treated the UTI, we had a caregiver with her 24 hours a day to keep her from falling, and learned there was such a thing as a bed alarm with a remote chime so it wouldn’t scare her if it went off. Before this couple of falls, she wasn’t sleeping well.

When you don’t sleep well, a lot of things can be affected. That’s important for caregivers, too.

Thank you, my friends, Father Peter, Lelah and Margy

This past Sunday, my friend Father Peter talked with me at our usual Sunday night pot luck dinner with my Hollywood Beach friends. After seeing my email about Lydia being in hospice, he offered to visit with Lydia, so I took him up on it. He has experience as a registered nurse in addition to working with Alzheimer’s patients and other hospice patients.

When we saw Lydia at the facility, she was in the room where the TV and keyboard are. She greeted me and kissed me on the cheek which is normal, but what is abnormal is that she was fairly calm. She allowed him to take a photo of us. Then he showed her pictures that were on his iPhone of a huge Great Dane, his housemate the Siamese cat, and the owner of both, Lelah, where we have our Sunday potluck. He also showed Lydia pictures of sunsets and clouds. She reacted and said that’s nice.

When he got to the photo of Margy’s painting that she has donated for the FTD Awareness Dinner – Food for Thought: Hollywood Beach Sunday, Sept 20, she said “Wow, that’s pretty!” He described that Margy has lived in Fiji and this was reminiscent of under sea life that she had seen there. At that time, Peter didn’t know that Lydia had actually been the only person in our family to travel to Fiji, and I don’t think Lydia made the connection that she herself had snorkeled there, but I’m happy to report that she liked Margy’s painting.

I’m grateful for the time that Peter spent with Lydia, and me in the car driving to and from her assisted living facility. Because of the time he spent with me, I feel a lot better support from just the generous resource that he is and the knowledge that he has had in supporting families in this kind of crisis. I wouldn’t have known Margy if it weren’t for Lelah having the dinners at her house, nor all the other supportive, inspirational and creative friends I’ve met there. Thank you all.

Heroes: Big Thank You to Two of Lydia’s Doctors

This March, when Lydia was in the hospital, she had a seizure and ended up in the ICU. Mom called me while I was finishing something up, so I came home to go with them to the hospital, an hour-plus drive away from them during Southern California rush hour. When we got there, inexplicably, they were taking in all the medical information again, even though she’d been on the same floor, a hallway and a half away. I was shocked and asked them if they wanted me to go get her file from around the corner. No. So, I said I wanted to talk with the ICU doctor who’d seen her. And I think the ICU staff was shocked that I insisted on speaking to the doctor. I admit I pretty much yelled at him because after about 2 hours of not knowing if she was going to live, I was a more than a little freaked out. And then he looked at her records while we were on the phone and said, “That’s not the way we’re supposed to treat people.” He took an active interest in learning about FTD, helped by connecting us to resources we would have no idea existed, forwarded information on the illness to me that when I sent it to my mom, she commented, “Wow, it’s like he’s treating us as through we’re peers.” Who is this hero? Dr. Tim Stacy

This hospital also had another hero, who met Lydia a few days before this ICU event: her current hospice doctor. When I asked the hospital for a hospice evaluation, they had this doctor evaluate her. When she called me, she said Lydia was a hospice patient. I said was it because of the FTD? She said “Yes, FTD is always a hospice diagnosis, because patients will not get better.” I asked her if she’d ever treated patients with FTD, and she had: 4 in her own medical practice, and 2 prior to Lydia who came to her as hospice patients. As far as I am concerned, she’s the doctor who has had, by far, the most experience dealing with patients in my sister’s situation of any doctor she’d seen before or since. Although she was finally diagnosed after 30 months of searching for what the problem was, AFTER she’d gotten on Social Security Disability (too late for the compassionate allowance), the diagnosing doctors said talk to the local neurologist, and her other doctors didn’t cross pollinate, so she fell through the cracks in a way, until June, when this doctor helped us get her out of a terrible situation and under her own care. Who is this hero? Dr. Alina Lopo

Thank you both, from all of us.

“So far from who we once were.”–Still Alice, movie

Like Julianne Moore’s Academy Award Winning role as Alice, a 50 year old Columbia University Professor in the film Still Alice, my ambitious Los Angeles-based sister Lydia has also shown signs of dementia, but hers is caused by FTD and not Early Alzheimer’s disease like in the adapted fictional novel by Lisa Genova, set in Cambridge. Lydia’s disease has caused her to lose her ability to communicate and read, which is horrifying for her as she has progressed through the awful journey she is still experiencing.

“So far from who we once were.”–Still Alice, movie

In the film, Alice has three children who are possibly carrying the gene. In my sister’s case, she has no children and has been cared for by me and our parents who are in their late 70s. No one should have to go through what we did, so this collection of information is what my mom and I have gathered while trying to get help for Lydia while having to get her diagnosed after many delays, the lengthy process our mother had to navigate for getting my sister onto disability after losing her job during the 2008 banking fiasco, the numerous tests that Lydia had to endure….many doctors will incorrectly diagnose as schizophrenia and bi-polar disorder, wasting valuable time and brain-power.

Alison's Reef II, original watercolor painted in 1998, framed under glass. 30x40

Alison’s Reef II, original watercolor painted in 1998, framed under glass. 30×40″ unframed.

While the fictional Alice was a professor of linguistics, Lydia spoke multiple languages, yet, tragically, now she has a hard time with English. She earned a degree in Chemistry at California State University Northridge, and worked at Redken Laboratories while earning her MBA from California Lutheran University and then transitioned to financial services. Like Alice in the movie, Lydia traveled world wide, with our family to Southern Europe and Australia and Asia, and by herself to Northern Europe and the South Pacific–including Fiji, the inspiration for the beautiful painting, Alison’s Reef II, generously donated by world-famous artist, Margy Gates to help us raise awareness for this awful disease.

Losing Learned Knowledge

People with FTD are losing connections in the fronts and sides of their brains. As I learned from the YouTube from the 2005 Caregivers Conference, an easy way for Dr. Coslett to tell if someone had FTD was to ask them to say Arbitrary and Colonel.

I just found out about this: http://mentalfloss.com/article/58515/why-colonel-spelled-way

Learn something new every day…..

Recognizing Frontotemporal Dementia: Arbitrary vs. Colonel

During the process of trying to find out anything that would help us, I found this YouTube video which both left me amazed and made me want to scream. The doctor professor is engaging and made a startling statement. *****COLONEL at 12.35****

Since this disease affects learned knowledge unlike memory in Alzheimer’s, and I know I’m simplifying this for the layperson, what I would like to see is for the words COLONEL vs ARBITRARY to be used by all doctors neurologist, psychiatrists, primary care, ER physicians as part of an addendum to the Mini Mental State Exam (MMSE). If that can help shorten the time of diagnosis so people don’t have to go through what my sister and family have gone through, I would consider that one successful outcome of this hideous tragedy. As the doctor in the YouTube above said, people thought FTD was rare and it’s often incorrectly diagnosed.

It’s a brain disease that affects a specific part of the brain, not memory as in Alzheimer’s, rather, personality, behavior and language with a median age of onset of 55 rather than 75 for Alzheimer’s.

It’s a young onset young person’s disease unfortunately, and was discovered by Arnold Pick in 1892, about 15 years before Alzheimer’s work.

“When I was a resident, people said, ‘This Pick’s Disease, you’ll never see it.’ It’s amazing they just said, ‘Uh you know just what was described is really rare, but that you might see a case or two.’ Unfortunately, a lot more, it’s far, far more prevalent than people recognize and certainly underdiagnosed. You guys probably know from experience that most people with frontotemporal dementias are given the clinical diagnosis of Alzheimer’s disease, yet so it’s people they’re still sort of an emerging understanding of the clinical aspects of it, so it’s often misdiagnosed.”    H. Branch Coslett, MD

With a number of doctors in the hospitals we’ve been in since the end of January, 2015 to mid-June, 2015, I’ve lost track of the number of doctors who said they had read about it once in med school or had no idea what it really is. This needs to be rectified. Help us spread the word.

“This needs to be rectified. Help us spread the word.”

Odyssey–Lydia’s Busy 2015 Schedule

I’m sure Medicare would prefer people don’t have to go through this obviously broken system.

Jan. 30 in board and care
Jan. 31 in UCLA Reagan
Feb.1-18 in Sherman Oaks Hospital
Feb.18-25 in board and care
Feb. 25-28 in Los Robles Hospital
Feb. 28-March 23 in Sherman Oaks Hospital
March 23-30 in West Hills Rehabilitation
March 30-April 4 in Sherman Oaks Hospital
April 4-May 20 in Studio City Rehabilitation
May 19-20 UCLA Reagan
May 20-June 5 Southern California Hospital Culver City/Brotman
June 5-9 Sherman Oaks Hospital
6/9 Courtyard Plaza, ironically the same name as the office complex of her first neurologist, but not in LA County.