Tag Archive | ftd

Signs of FTD

Here are some of the signs of FTD. These are from the behavioral variant of FTD. Although Lydia has the language variant, at times she did show some of these signs, but we didn’t know it as FTD yet, because she’d been misdiagnosed.

FTD Behavioral signsShe did have some spending issues–I’m not sure if she was buying multiples because she was going to give gifts, or if she was confused about where she’d put things and bought duplicates to replace them or what.

We saw signs of apathy, which we thought was depression due to the loss of her job at Wells Fargo in their Beverly Hills Wealth Management office in the banking fiasco of 2008, and then when she got another bank job working in a trust department of a bank, that bank was swallowed up by a bigger shark…I mean bank. I thought there was something wrong with Lydia when it took her FOREVER to finish the book, The Help, after the Trust Department job was eliminated.

FTD Behaviors

Lydia, a lifelong coffee drinker, could no longer do the steps she needed to make coffee. She knew what the parts were, but couldn’t pour the hot water into the filter holder to make a single cup because her executive function was being affected. In the time after she was finally diagnosed, Lydia would tie…and retie…and retie…and retie her walking shoes. She also would take a decorative potholder to her room and clean dishtowels…over and over and over again. We’d never seen anything like that, but these were compulsive behaviors and hoarding. After her longer stay at ULCA Medical Center, she would take place mats to her room…over and over and over again. We at least knew she had FTD at this point.

Lydia did have periods of agitation, which started after one of her medications was tapered off too quickly after her grand-mal type seizure.

FTD BVT Diagnosis

Lydia did a lot of pacing from her long stay at UCLA Medical Center in 2014 until around March of 2018 when she started showing signs of Parkinsonism which made her lean forward while walking like she was Usain Bolt taking off from the starting block at the Olympics. One of the medications she was on was eliminated, she is on a decreased dose of one anti-seizure med and is on a newer one to help manage the symptoms.

FTD Genetics Pathology

These screenshots are taken from https://www.theaftd.org/what-is-ftd/ftd-disorders/behavioral-variant-ftd-bvftd/

 

 

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.

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.