Wednesday, October 3, 2012

Symptoms, Side-effects, Medications...Oh My!!!

So it was great seeing my parents again this past weekend.  My mom has her ups and downs with FTD...we seem to be in a slightly "down" time right now.  We spent Saturday at Kolache Fest with my in-laws.  It was so nice seeing some of my mom's friends who are all concerned about both my mom and my dad.

At mother's last neurology appointment, Dr. Schulz prescribed 250mg of Depakote.  Depakote is used to help FTD patients slow down just enough to think before they speak.  I think it is also supposed to slow her ADHD brain down just a little.  Anyway, Daddy was supposed to increase the dose by 250mg each week if her symptoms didn't improve.  She could have up to 1000mg per day.  The reason Daddy increased the medication from 500mg to 750mg was because he hadn't seen improvement in her ability to "put on the brakes" with her thought-to-mouth process.  It has done nothing to help...instead, we are thinking that it might be making her hallucinations/delusions worse.

She is visiting the guest house behind their home (where her mom lived while she was sick with Alzheimer's) to talk with her mom. She opened the front door to let her mom in her house. She sees one of their former employees all the time. She even drew a picture of him with a Sharpie on the sliding glass door.

So Daddy is making some notes in preparation to talk either with Dr. Schulz's nurse or Dr. Schulz himself about the medication and what could be causing the hallucinations/delusions.

On a better note, my mom's blood sugar and blook pressure are ideal according to the endocrinologist.  She just needs to kick up the exercise a bit.

Friday, September 28, 2012

Learning to live and love in spite of a personality-robbing disease

Here is a link to a wonderful article about care taking for a spouse with FTD.

Monday, September 10, 2012

On Disappearing...

So my mother's birthday just passed...she turned 68.  She and my dad came to Round Rock to visit for the weekend.  Daddy called me very frustrated on Friday...her actual birthday.  They had been planning to go out to a nice dinner in her hometown of Moulton, Texas.  She had told my dad that she wanted to eat at Kloesel's Steakhouse for her birthday.  Daddy had planned to take her a little early to avoid the crowd on Friday evening.  Mother doesn't do well with crowds of people anymore.  They were going to have a nice dinner and then head to Round Rock the next morning.  Daddy called frustrated because mother had decided that she was going to wait in the hot car until he was ready to leave.  This of course was about four hours prior to their planned trip.  Daddy kept having to go get her and bring her in till he finally called and said they were going to eat and come straight to Round Rock.  So that is what they did.

We had a lovely weekend.  We swam Friday evening and ate light appetizers.  Our friends Ken and Julie came over for a visit, too. 

One of the main reasons mother and daddy had decided to come to visit was because they both needed to do a little shopping. Mother for clothes and daddy for shoes.  On Saturday we ventured out in the early afternoon.  Kiley and I went ahead to Chico's to get things lined up and to tell them about my mother's brain disease.  It worked beautifully.  We had lots of clothes lined up for her to try on.  I even had some glimpses of the old mother.  She loved to shop and buy beautiful new things.  On this particular shopping trip, she found a beautiful bracelet right when she walked in.  Of course she bought it.  And even though it was a lot of work, everyone got what they wanted out of the trip.

On Sunday my mom knew they were going back to Hallettsville so she started heading to the car early again.  We had to re-direct her several times before she and daddy finally left.

This time my mom mentioned that she felt like we were disappearing.

Today I found a NY Times article that I wanted to share.  It is about disappearing:

Friday, August 31, 2012

Seeing Things That Just Aren't There

So I talked to my dad for a while this afternoon. He sounded really good. Here's what he said about mother. Mother has now been on Depicote for a few weeks. She's up to twice per day. Daddy said she's calmer but she told him she's seeing things that she knows aren't there. She is sleeping good but doesn't go to bed till late and then sleeps till noon. She still seems to get obsessed about things. She thinks Lauren is there. She also goes to the guesthouse to tell granny about family. I'm just so sad to be losing my mother to FTD. It is horrible.

James and I went walking last might at one of the middle schools in Georgetown last night. It brought back memories of better days with my mom. She could focus on exercise, carry on conversations and show a little empathy. She's pretty much lost everything. She had complex thought processes and could reason.

Wow...what a difference a few years makes.

Saturday, August 18, 2012


I feel like I have my mother back...somewhat.

So last week the neurologist recommended a new medication to help slow my mom down a little. Depicote. He called it "brakes". It's an anti-seizure med that is used for a lot of things besides seizures. Anyway, she's only taken two small doses but I can already tell a difference. I can carry on a conversation with her, she went to a party last night and stayed longer than an hour and she hasn't been pacing back and forth for food. She's not quite as OCD. I'm going to try to enjoy every minute with my mom.

I know there are a lot of FTD patients that don't take meds like Namenda or ant-depressants or Depicote because they don't feel like themselves but for the first time in months when I asked my mom how she felt, she said, "I don't feel like I'm going to disappear." This is huge!! I feel like I have my mother back. I'm happy.

Wednesday, June 6, 2012

Howard's Blog

I wanted to post a link to Howard Glick's latest blog post about apathy and dimentia.

Saturday, May 12, 2012

Mother's Day Weekend

So playing Scrabble with my mom isn't the same as it used to be. Now I'm playing with my mom and FTD. I have to keep score now...she used to do that. I have to help her find words sometimes or remind her to play on a double or triple to get more points but that is least we can still play.

I decided to get her a new art set for Mother's Day. I figured if she sparks the creative juices in her brain at least a few times a week that would be a great start.

It takes a lot to get her motivated and keep her motivated, but she is so afraid of "losing" herself that I think she is willing to try anything and so am I.

I love my mom so much and am so grateful to still have her in my life

Wednesday, May 9, 2012

FTD Revelations

So another FTD support group meeting has come and gone.  I learned two very important things.

1.  If your loved one seems to take a sudden turn for the worse, it is most likely due to another illness.  Once that illness is treated, your loved one should return to their normal FTD state.

2.  Even though someone with FTD doesn't show empathy and love in the same way they used to, it doesn't mean they don't benefit from signs of affection...a hug or kiss or "I love you."  Just because they may not be able to outwardly initiate those signs doesn't mean they don't experience the feelings and love the affection.

I also wanted to share a number of links to articles and videos that I've come across recently.  It is really great that these journalists are writing about FTD.  It is getting the word out about this terminal disease.

Forbes article: Inside The Mind Of Frontotemporal Degeneration: A Patient's Story - By: Alice G. Walton
(Featuring Howard Glick)

NY Times article: When illness makes a spouse a stranger - By: Denise Grady

Forbes article: The Other Side of Frontotemporal Degeneration: Inside A Deteriorating Brain - By: Alice G. Walton
(This is kind of a follow up to the NY Times article

Sunday, April 15, 2012

Gumbo Practice

In two weeks is the State Championship Fiddler's Frolics and BBQ Cookoff.  My family has been cooking in this competition since the beginning between my uncles and my dad, mom, sisters and now my husband and brothers-in-law and our various friends.  So a few years ago, my mom had a first place win in the Jackpot Gumbo Cookoff.  We've been trying to match her win ever since.  So I did take a stab at it last year with my mom's supervision.  She kept telling me that my roux wasn't dark enough, but I totally chickened out and made a blonde roux which made my gumbo beige and boring and bland.

This year I'm taking another stab at it.  I've been reading as much as I can about roux and okra and file and all things gumbo.  Here is my first attempt at roux.  It could probably be a little darker, but I didn't want to take a chance at it burning and then having to start all over.  I think it looks like milk chocolate which is one of the descriptions I read about.

I used a combination of bacon fat and vegetable oil.  Next time I think I am just going to go with straight vegetable oil.  I think I will get a cleaner and more consistent roux.

Next was the trinity...celery, onion and green bell pepper...I added it to the roux.

I cooked this together for about 10 minutes which softened the vegetables.

Then I added the stock.

I simmered this mixture together for about 30 minutes before adding my bay leaf, sausage and shrimp.  Cooked this together for about 15 minutes, removed the bay leaf and added salt, black pepper and cayenne pepper.  I decided that I didn't want to add the okra since the roux did a great job at thickening it.  I may buy a little file to sprinkle on top to make it more authentic.

And voila.  With a little rice, and some scallion for garnish, the taste was awesome.  I got two thumbs up from both James and Kiley.  I'm going to take a sample to my neighbor who is from Louisianna for one more little taste test.

Tuesday, April 10, 2012

My brain feels like mush...

So I know that my mom knows that she has FTD, but I don't know if she knows what that means. She does know that it is dimentia and that it is affecting her behavior. She just can't control it all the time. At one point this weekend, she said her brain felt like mush. At another point she asked Donna what her name was and then later said that her biggest fear was forgetting her kid's names. It is getting harder and harder for her to control her behavior and sometimes she just lets it all go.

I love my mother so much and wish I could have her back the way she was five years ago.

Monday, April 2, 2012

Howard's Brain

This is a really entertaining video recorded by an FTD patient to raise money and awareness about FTD. I hope you take a moment to watch it.

Howard's Brain

To learn more about FTD and Howard see these sites:
National Institutes of Health:
The Association for Frontotemporal Degeneration:
Howard’s Blog:

Bill's told by his son.

An interesting video about a father and husband who has FTD. Bill Fehon was an avid bow hunter. His son is creating a documentary about his father's life. This video was taken at the annual bowhunter's meeting. There are some videos within this video of Bill Fehon and of his wife that show the disease in the early stages. The early stages can last many years. The final two stages go pretty quickly.

The two links above are just two different ways to get to the same video.

Words of Encouragement

I receive the AFTD newsletter and saw this article in it about a husband who has FTD and the wife's experience. I am reposting for your reading.

From Catherine Montgomery

Finding Companionship in a
Silent World

The hours when there is no communication between my husband and me make
me wonder if this is what it is like to live with a deaf person. Robb,
however, is not deaf. He has FTD--Frontotemporal Degeneration--a
dementia that that has taken away his ability to converse. I call it
living in a vacuum. As the dementia has progressed, one by one, the
many and varied interests of his have dropped out of his memory. The
creative gifts have also disappeared. First the gift of surgical talent
was stilled, and then it was his ability to design and create stained glass
pieces. All memory of that artistic era has disappeared. He used to be
full of ideas and had opinions about many subjects. Now I guide him
through the day with a simple routine of sleeping, waking, eating and
dispensing medicines. We do watch TV, and he chooses music to play on a small
DVD/CD player. The one outdoor activity, which marks each day, is
feeding the birds. He no longer can tell me the names of the birds or
identify the calls as he used to do. There is one thing he can do well
and that is to beat me at Gin. We slowly play several hands after
dinner, and he continually outplays me.

Recently Robb was asked, "How did you decide to become a
podiatrist?" Unable to recall his decision, he looked to me to answer
the question. Listening to me as I related the events, which led to a
discussion of his life's work, it was as if he were hearing it for the first it was a story about someone else.


As I do not see the situation improving in Robb's condition, I must make a
friend of the silence. There have been times as a young mother, raising six
children, when I would have welcomed some quiet. Little did I know how
a day without sociable conversation would make me work to keep engaged with
the world around me...trying to interpret what Robb struggles to say takes
all my concentration and sometimes we just give up.

I am really glad that there are activities that I can do to fill the hours of
quiet. It has allowed me to take a renewed interest in planning and
preparing meals, to write to family and friends, and to begin painting once
more. We have family and friends who come to visit, and even though Robb does
not contribute to the conversation, he is a part of the group.

As our children come to visit us, Robb no longer struggles to keep back tears
when they leave. The first time this happened I asked him, "You
don't think you will see them again, do you?" He nodded yes.
Then we both cried. Tears are really helpful, and we do not hold them
back. One of the precious moments we share now is tears. I would
never have expected this to have the meaning it does.

I share these various ways I can help my beloved husband with the hope that I
may help someone else who will walk along the same path.

--an exerpt from Memory is a Fragile Thing
- Reflections of my life experiences from childhood to the present. ©

If you have Words of
enCOURAGEment that you would like to share in upcoming issues of The Gateway,
please email them to with "words of encouragement" in
the subject line.

Wednesday, March 7, 2012

So I'm feeling kind of sad today. My mom went to spend a couple of nights with Donna. She wanted to go home after the first night because she was missing my dad. I thought that was really sweet, but I'm glad that she stayed another night. It is really sad for me to think about all the fun times that I had with my mother before FTD and that I will never have THAT mom again. On the other hand, it is great to see my dad step up. My mom has had to step up on so many occasions for so many of us. My dad is taking great care for her just as she would of him and has in the past.

James and I had lunch today and were talking about vacations during the school year. Those will be things of the past since we no long have parents that can stay with Kiley for any length of time. That makes me sad, too.

Thursday, February 23, 2012

So I never did post anything after the AFTD support group meeting.

The meeting was both comforting and informative. I'm actually looking forward to the next meeting.

This past weekend we celebrated James' 50 birthday. My family came to help celebrate along with some of James' co-workers as well as some of our friends. When Randy and Kathy Frederick arrived I went to greet them. My mother followed me. She called Kathy "Cindy" and thought she knew her from a wedding. I had told them previously about my mom's disease. They were very understanding. It really helped to have gone to the support group meeting to learn strategies of how to deal with awkward situations.

One of the handouts from the support group meeting was a card that said "Please excuse my companion. She has Frontotemporal Disease which affects her behavior." It is amazing how forgiving and patient people can be if they understand.

It makes me very sad that my mother has an irreversable disease that will eventually end her life. I guess that is a pretty drastic way to look at what's going on.

Tuesday, February 14, 2012

So we got the diagnosis a couple of weeks mother has Frontotemporal Dimentia or FTD. We knew something was wrong for the past few years, but couldn't put our fingers on it. My granny, her mom, was diagnosed with Alzheimer's about 25 years ago. We always knew it was a possibility that someone in the family was likely to get Alzheimer's but I think all my aunts and uncles hoped it wouldn't be them. I am feeling a bit like a cosmic joke has been played on my family. Anyway, I plan to write about this as best I can as the weeks, months and years progress.

Today I am attending my first FTD support group. I will write about it later.