Stop the roller coaster . . . I want to get off!

My husband Claude has been diagnosed with FTD (Frontal Temporal Degeneration) by a neurologist. I have done a lot of research on line, talked to others on this site and of course spoken to medical professionals. I know some of you have read my previous posts and know a bit of our journey. I wanted to list some of my husbands behaviors so that we (others who have a loved one with FTD) could discuss and maybe try to help each gain a better understanding of this terrible disease.

I want to preface this by letting you know that before this disease my husband was gentle, kind, loving, a wonderful husband, father and grandfather. We have been together for 40 years. He was my best friend. He was highly professional and had a job with the FAA. He also attended church and our faith has always been strong, He went to all his 5 grandkids sports and school activities . . . . And then one day he lost his job due to erratic behavior.

Early behavioral changes (when we first started to notice after the loss of his job 15 months ago).

Started being forgetful
Was easily angered
Seemed confused at times
Started being really stubborn
Was hard to reason with
Would comment on how he was having trouble remembering
Couldn't remember friends and acquaintances at times and/or events
Change in personality and mood, seemed depressed
Started being self centered
Started withdrawing from friends and anything social
Started showing signs of poor judgment (like diving in shallow end of pool)


About 6 months ago (along with the above):

Started having outbursts
Was aggressive in behavior
Very easily Angered
Started giving me dirty looks
Became even more stubborn
Started getting words mixed up
Was repetitious in his actions
Had no filter
Showed no empathy seemed cold
Unwilling to talk or gives one word answers
Started being unsocial
Started saying he was going to win a million dollars
Gullible believing he was really going to win a million dollars
Stopped going to church with me


Now (along with most of the above):
At this point the neurologist has pulled his drivers licenses

He sleeps a lot
Gets up during the night
Non stop eating of sweets
Whispers or talks really low and soft
Plays music and TV full blown blasting the volume
No affection or emotion shown at all
Everything is all about him "mine" (is his favorite word)
Slurs his words at times
Complete stubbornness and extremely unreasonable
Watches TV all day long (some shows over and over)
Is completely unsocial
Is completely in denial of anything being wrong
Gets mad really easy (scary)

Such a roller coaster ride . . . never know what I will be dealing with day to day. The unknown scares me. I feel like it is going really fast and that scares me. I feel like I am living with a stranger. Even though I have great support in friends and family I still feel alone. I feel like I have lost my best friend. Do any of you have any thoughts or comments or similar situations. This is the hardest thing I have ever had to deal with and sometimes on his really bad and mean days) I truly don't think I will be able to endure. I also feel like it is going really fast. Remember together we are better.

Hugs and prayers always,

FTD Overview

When I tell people that my husband has Frontotemporal Degeneration most people have never even heard of it. I have heard it is second most common brain disease. I have attached the disease overview from one site that I go to for answers. I hope this is informative to those who need it. Remember so many of the brain diseases in dementia form go misdiagnosed a majority of the time. Together we are better . . . . prayers for all who are dealing with this disease and for their caregivers.

Disease Overview
Frontotemporal Dementia
Signs and Symptoms

In the past, patients with frontotemporal dementia (FTD) often were misdiagnosed with depression, schizophrenia or Alzheimer's disease. Because some FTD cases still may be misidentified, doctors at the UCSF Center for Memory and Aging say it's difficult to determine the prevalence of the disorder but they believe FTD is the most common dementia diagnosed in patients under age 60 and is as common as Alzheimer's disease among patients age 45 to 64.

Early symptoms typically involve personality or mood changes such as depression and withdrawal, sometimes obsessive behavior and language difficulties. Many patients lose their inhibitions and exhibit antisocial behavior.

Doctors at UCSF have identified a small group of patients who develop extraordinary visual or musical creativity, while experiencing language and social impairment.

As FTD progresses, it takes a toll on mental abilities, affecting memory and other functions that are more common in Alzheimer's disease and other dementias. In Alzheimer's, one of the first symptoms is memory loss. With FTD, unusual or antisocial behavior as well as loss of speech or language are usually the first symptoms.

In later stages, patients develop movement disorders such as unsteadiness, rigidity, slowness, twitches, muscle weakness or difficulty swallowing. Some patients develop Lou Gherig's disease or amyotrophic lateral sclerosis (ALS). People in the final stages of FTD cannot care for themselves.

Behavioral Symptoms

Early signs of frontotemporal dementia may involve the following symptoms:
•Apathy or an unwillingness to talk
•Change in personality and mood, such as depression
•Lack of inhibition or lack of social tact
•Obsessive or repetitive behavior, such as compulsively shaving or collecting items
•Unusual verbal, physical or sexual behavior
•Weight gain due to dramatic overeating (Read more about FTD and binge eating.)

Patients may neglect hygiene and resist encouragement to attend to themselves. They also may lack awareness or concern that their behavior has changed.

At the UCSF Memory and Aging Center, doctors have found a small group of FTD patients who develop new creative skills in music and art. The artistic talents developed when brain cell loss occurred predominantly in the left frontal lobe, which controls functions such as language. It is believed that the right side of the brain regulates more abstract reasoning.

Language Symptoms

Language problems are less common but do occur in the early stages of FTD before other thought processes, such as memory, are affected. Patients may experience difficulty speaking or finding the correct word when naming objects. Difficulties reading and writing then develop. As the disease progresses, less and less language is used, until the patient becomes virtually mute. Other patients may have a severe problem recalling words and understanding word meaning, but continue to have otherwise normal speech.

Hope this helps answer questions . . .

The light in his eyes is gone . . .

Today we met with the neurologist once again. Claude was recently diagnosed with FTD (Frontal Temporal Dementia) after losing his job for erratic behavior and then continued erratic behavior for months. It has been devastating for our family to watch the once amazing and loving husband, father and grandfather decline and change in front of our eyes. Today he got another blow (but we knew it was coming). The doctor told him he could no longer drive . . . . This means not only giving up driving cars but giving up riding his motorcycle which he loves dearly. My husband argued with the doctor saying he was fine, a good driver and just was a little forgetful. The doctor very gently but firmly told him he could no longer drive for his safety and the safety of others. He then told my husband he was reporting it to the DMV and his license would be suspended. It broke my heart to see the sadness in his eyes. It took everything I had to hold back the tears. I feel sad and then mad and then guilty and then sad again. But I have to be strong and not let him see my sadness. It's all just so much work and so draining. He is still young and we had so many plans. This is just another part of his independence being taken away. It just isn't fair. This disease is absolutely hideous!

On the way home from the doctors office our daughter Nicole talked to him more about what the doctor had said but he was defiant and said he was going to drive. Our son Jonathon called him later just to say hi and see if he would mention what the doctor had said. To our surprise, he told our son that the doctor said he couldn't drive and then told our son he was still going to drive anyway. Of course, then Jonathon explained once again all the reasons his dad could not drive.

When I got home from running errands I told my husband that I would take him on a drive every day in the country, and, that we would turn the music up full blast, roll down the windows and speed. He had a huge smile and then said to me "really"? I responded with "yes"! So this will be our little date every day that I can. . . . .a ride in the country! It's all about making more memories when we can and making the best out of what we have been dealt. Just 38 years ago when I said "I do" I said for better or worse and I meant it. Hugs and prayers. . . . Rhonda