Wednesday, July 25, 2012

UCLA Follow-up

When my mom was given the probable diagnosis in March, of semantic dementia, a hundred questions raced through my mind. Of course I wasn't going to wait until a follow-up appointment to learn about her disease; I began reading everything I could find on FTD and semantic dementia. Between March and now, she has had an MRI to confirm the diagnosis. I suppose this visit was a follow up to discuss the results of the MRI (although they had already confirmed over email that the findings were consistent with semantic dementia). Though I feel as if many of my questions have been answered over the past few months of research, I have still been anticipating this visit to UCLA. I guess sometimes it helps to hear the answers straight from the horse's mouth.

I walked into the extremely cool, air-conditioned building of UCLA medical around 10:15 this morning. My dad was parking the car (we were running a tad bit late...good ol' LA traffic); he dropped us off in the front to get mom checked in while he parked. I don't know if it was the chilly air or my nerves, or maybe both, but my teeth would not stop chattering. Why was I so nervous? I knew what to expect, but coming face-to-face with reality was a bit overwhelming for me at that moment.

I saw an older, short woman with short grayish hair approach the waiting room, her eyes searching for someone. I looked at her nametag that read "Jill" and knew she was looking for us (I've heard all about nurse-practitioner, Jill, since the last visit. I felt like I knew her already!) She finally recognized my mom and started to say hi just as I told her that we were the people she was searching for. My mom gave her a blank look.

"Hi Deana, do you remember me? I'm Jill, your nurse."

My mom looked at her with a blank expression on her face for several seconds. She finally uttered an "oh yeah" as she began to remember her last visit.

"How was your drive?" Jill asked my mom, remembering that the last drive out there had wreaked havoc in my mom's stomach, and consequently in the car and on her clothes.

Wrong question. All mom heard was the word "drive".

"Driving? Oh yeah, I was really so sad the last time I came out here and you guys cancelled my driving even though I'm really a good driver. I was always a good driver, I don't know why you had to cancel me, I was really sad about that too..."

She went on for a good minute or two and Jill just gave me the "uh-oh" look as she realized she had just opened a can of worms. She tried to gently redirect her and change the subject. She finally told us to have a seat and wait a few more minutes while she checked to see if the doctor was ready.

After a few minutes, we were called into the doctor's office with Jill, Dr. Mendez and another guy who wasn't introduced to us (I believe he was a neurology professor who was there for observation). Dr. Mendez reviewed some things with us from the past visit and asked my mom some questions. She had a difficult time understanding why she was there; she asked them to help her with her headache medicine and went on many tangents throughout the meeting about her driving situation.

Dr. Mendez pulled out a big book that contained pictures of objects. The beginning pages were sketches of everyday items. He asked her if he knew what the items were for and what they were called. She identified that the sketch of the comb was for "combing hair", but couldn't name it as a comb. He showed her a sketch of a toothbrush.

She stared hard at the picture and finally said, "Hmph. It looks familiar" and then shook her head.

He showed her a picture of an octopus and asked her if she knew what it was. She didn't know. He showed her several more pictures of animals: a camel, a horse...I really can't remember what else because at some point I finally had to look away; my heart couldn't take it. Tears welled in my eyes as I watched my mother struggle with each answer (every answer was either "I don't know" or "a dog"). I took a deep breath, looked at the door of the room and told myself that I would not break down in front of these people.

The next round of pictures was of celebrities: Ronald Reagan, Elizabeth Taylor, Marilyn Monroe, etc. She could not recall who one of those people were. My mom has always been a big classic movie fan. I remember watching many movies with her which featured Elizabeth Taylor and Marilyn Monroe; she had no clue who they were. She kept asking "How would I know these people?..."are these people I know?" and she would read the headline on the page: "famous people". She finally looked up at the doctor very suspiciously and said,

"This isn't you, is it?" Then she glanced around the room, as if we were all tricking her. "These aren't pictures of all of you people, is it?"

I have to admit we did get a few chuckles out of it, mom included. We assured her that none of our pictures were in the book.

Dr. Mendez then showed us the results of the MRI. He explained the findings in the brain and how they were consistent with semantic dementia. In the picture of her brain was a dark circle. He explained that it was a hole in her brain. That part of her brain is disintegrating.

Basically, semantic dementia is caused by a protein called TDP 43. This has only been discovered in 2006, so there is still a lot unknown in this particular form of dementia. From what I can conclude, it seems that this protein eats away at the lobes in the brain. There have been recent clinical trials of medicine to treat this disease; it was concluded as being ineffective. There is no treatment at this time. Based on the cognitive testing (and I'm guessing what he saw on the MRI), Dr. Mendez categorized her as "moderately advanced" in this process.

Now for the good news. How can there be any good news in this??? What I really loved about Jill was that she wanted to focus on the positive. There is so much negative, and news like this is devastating. So she took time with us to point out the positives in our situation.

#1. There is NO genetic link in semantic dementia. What a huge sigh of relief I breathed today. Most of the information I've read points to no genetic link, but there have been a couple things I've read that say there is a higher chance of carrying the gene for children of people with dementia. Jill reassured me not to waste any time worrying that this will happen to me or my siblings, kids, etc. Whew!

#2. In my research, I've read over and over that the duration of this disease is generally 6-8 years. She says the duration is longer with semantic dementia. It is generally 12 years, but there is no definitive answer as it varies case by case. It could be longer, or it could be shorter. To be honest, I don't know if this is good news or not. I don't want my mom to suffer. For now I will view this as a positive because it means that we have more time left, to make memories, than I had originally anticipated.

#3. Mom has a lot of obsessive behaviors. It doesn't seem like a positive, I know. But many dementia patients have safety issues (due to extremes in their behaviors), problems with hygeine, eating (weight loss), taking medicines, etc. Because my mom is obsessed with taking her medicines on time, sleeping for certain lengths of time, showering and "decorating" her hair and make-up, this works for our and her benefit. She does not have the problematic behaviors that so many others face.

#4. Along with #3, the frontal parts of her lobes are not as damaged. That part of the brain is the part that focuses on behaviors. Though her behavior and personality has changed with this disease, it is not the same changes in behavior you will see when this part of the brain is damaged. When or if the damage spreads to this part of the brain, we may see more mean and aggressive behavior, outbursts, etc.

#5. She is still classifying things in categories. For example, aside from the octopus, she still identified the animals as such. Even though she thought most of the pictures were of dogs, she still recognized that they were animals. She identifies food in the food category, even if she's not sure what the name of it is, and so on.

Out of all the forms of semantic dementia, this is the most rare. Jill gave me some resources to find support for people with this specific disease, which I fully intend on utilizing. They will follow up with us every 6 months, to check on her progression and help us in whatever difficulties we face.

After an hour and a half consulting with Jill and Dr. Mendez, we left UCLA. Our questions are answered...for now...until we think of new ones to ask. It wasn't all doom and gloom as I had expected. Yet I still find myself emotionally exhausted, as I try to sort everything out in my mind. Aside from my husband and my Aunt (who I'm very close to), I haven't talked about this with anybody. In fact, I've kind of been avoiding talking about it. I'm usually pretty open and don't mind talking. Today, I just needed my space to take it all in and process it. I find it easier to share through writing than by speaking. I wanted to write while it was fresh in my mind. And I needed to write for my own therapy today. I'm sure there is a lot of information I've forgotten to write in, but it's all I can manage for now.


  1. I am glad you posted this quickly because I wanted to know what happened at the appointment, but I did not want you to have to explain it a thousand times.

  2. Im glad that their was some positive news that you were able to take home from this visit. I guess we need to take this day by day.

  3. I like that you focus on the positives Cassandra! Your blog is incredible. What a wonderful outlet. I was not as smart as you and I would bottle up my sadness and have a craying spell when I couldn't hold it in any longer. I'm going to post my thoughts and some of my past experiences on your posts. My intention is to help, but if I cause you pain, let me know.

    My father was devastated when he was told that he could no longer drive. It became a big struggle for my mom. Something that eased the pain there was that my mom allowed my dad to keep his own set of car keys. He took his own set with him whereever they went. I don't know if he ever tried to get in the car and go anywhere by himself after that. I will have to ask my mom.
    I LOVE your positive number 1. That is one of my biggest worries. Both my father and my maternal grandfather had Alzheimer's which is genetic. I am so doomed.
    Number 2 is a great positive as well! Life expectancy after an Alzheimer's diagnosis is about the 6-8 years. My father made it 15 years. I've always attributed that to his relative good health (which I thnk is a direct result of living the Word of Wisdom.)

    1. Judy, thank you for sharing your stories with me, and everyone else who reads this. My intent is to make this a place where people can find suppport from one another, so your contribution makes a difference :)
      I can imagine how hard it is for you fearing you'll get Alzheimer's someday (since it's been on my mind as well). Let's hope that they can find some kind of cure by that time!!!! ;)

  4. Thanks for posting updates on your mom, Cassandra. I know it doesn't feel like it, but you are such a strong woman! I think trials either make us or break us, and this is coming from someone who has had her share of trials, too. I can see that you are being as positive as you can be, and that makes me happy. This experience, although horrible, and something nobody should ever have to go through, will make you stronger. I can see that. If you can deal with this, almost anything else that comes your way in life will seem like a piece of cake. You're all constantly in my prayers, and much love and hugs to you!

  5. Oof! The hole in the brain part hit me in the chest hard-- really hard. It's like I saw the pictures you were seeing!

    As usual, Cassandra you have captured the feelings and emotions and made this a "you were there" experience. (It's an old Walter Cronkite series of history films they used to show us in school).

    I think we can now put to rest a lot of the speculation that has been going around the family. Thanks for accentuating the positives. Like you, I am not sure that one is a blessing or not. Time will tell.