Sunday, July 15, 2012
We've had a break through!!!
Ok, so not like this huge miraculous break through(although that would totally rock!!).
From the very beginning of Mom's diagnosis of frontotemporal dementia, she has had serious set backs with communicating effectively. We(me, my aunt, my mom, & the psychiatrist) finally figured out that Mom's biggest hurdle in speaking was the fear & realization that she would say the wrong thing. For months, my aunt & I would try our very best to reassure her that she didn't need to worry about saying the wrong thing or not being able to find the right word at the right time. It can be frustrating for everyone involved just because sometimes it can take quite a bit of time for mom and somebody else to be able to understand eachother. In her way of defending herself, she just decided that she wasn't going to talk very much at all. However, she would have these great little conversations with our dog, Lizzie. It's super to see her talking, but super irritating that she just wants to talk to the dog! I get the fact that there's no pressure from Lizzie. Lizzie is not going to tell her that she meant to say 'dinner' instead of 'car'. Lizzie will sit there and just wag her tail no matter what.
Then we found out that mom was doing ok with talking at the adult day care program. Again, very frustrating. My mom is able to participate in small discussions at the day center, but couldn't tell me what she wanted to do for the day.
Finally, something either clicked in her head or she got over the anxiety(my guess is the second just because she's started to be a little less inhibited in other ways....another blog post for that later), but it doesn't matter! My mom will now have a conversation with you!! Now I can't guarantee that it will make much sense or that it won't take some time to figure out what she's trying to say, but she will now routinely tell me what she did during the day. And she'll tell me again in 20 minutes. And possibly again in another 5 minutes after that! She will ask me how my day was. That hasn't happened for about 4 months.
So we went from very little speech to a whole lot almost over night. She still has very little, if any, emotions in her speech or body language, so that can be challenging. And some days are still just really good while others I think that her brain has just decided to throw in the towel. Life continues. Day by day. Always in motion and never staying still.
Saturday, May 12, 2012
How It All Began
Everyday with frontotemporal dementia brings new challenges and dilemmas. With FTD, my mother has experienced every type of symptom that can come about. Some of the issues or difficult tasks are:
-Slow motor skills
-Language skills, which includes everything from finding words to being able form a complete sentence
-Loss of cognitive skills
-Loss of all problem solving skills
-Lack of emotions; usually 'neutral' or 'uncontrolled crying'
The back story is rather long and detailed, so this is kind of(haha) the short version. My mother was only diagnosed with FTD in January of 2012. However, she has been categorized in the moderate to early-advanced stages. Signs that pointed towards something being wronged became apparent when I was a teenager(about 8 years ago). Since then, she has changed jobs multiple times, never staying anywhere for more than 2 years. My mother would always say that she just got tired of that job, but she would also get fired occasionally as well. She was a good worker, so I never understood why and she wasn't able to tell me why. She would also change friends the same way. She would have a new best friend every few years. When asked what happened to her other friends, the answer was always, 'I don't know. They won't talk to me anymore.'. She would change hobbies the same way always adapting to what she thought somebody else expected of her.
When she lost he last job that she had in the summer of 2011, she eventually had to move in with my aunt and me due to finances. I'd been living my aunt for the past 6 years while I tried to figure out my life and finish school. I was trying to move out in a few months and try to be an independent adult. Now that my mom had moved in, and something was obviously wrong, those plans got put on hold.
On a Saturday in December, both my aunt and I had had enough. To be honest, my mom had just been sitting around the house and deteriorating before our eyes for the past week or so. She wasn't trying to find a job, not helping out at home, and was content to just sit and be a slug. Her mental state had declined as well as her communication skills. We went to the emergency room, not knowing what else to do. After a 14 hour long stay, Mom was admitted to the psychiatric unit due to being suicidal. After a week, she was released with a recommendation of following up with a neurologist. We saw the neurologist a month later. After cognitive, motor, and language tests, we received the diagnoses of frontotemporal dementia. There is no real treatment. Alzheimer's drugs can somewhat help stabilize, but not very successfully. She takes 5 different prescriptions a day, and it seems that every time we go to the doctor we get a new one. The true blessing in this disease, is that she doesn't really know what's going on. My aunt and I have explained it, as well as the neurologist. She just continues on her way, doing what she can everyday. She's 58 and doesn't realize that her time has been cut drastically short in a very harsh and cruel manner. My aunt and I are reminded of it everyday when she calls us the wrong name, or can't remember what she did that afternoon. FTD now rules our lives. From making sure that moms food is cut into bite sized pieces to helping her choose what to wear each day. She goes to an adult daycare facility 3 days a week. Aside from making sure that she's safe, the day center makes sure that mom is able to do things that she still can with a sense of pride and accomplishment. My mom still loves to crochet, but can only make these very odd looking BIG hats. She doesn't know that she's making a completely useless thing, although we have found that they make good chair covers!, but she enjoys it and it makes her use her brain. As summer comes, we're not sure what else will happen. But life is a journey and always full of surprises.
-Slow motor skills
-Language skills, which includes everything from finding words to being able form a complete sentence
-Loss of cognitive skills
-Loss of all problem solving skills
-Lack of emotions; usually 'neutral' or 'uncontrolled crying'
The back story is rather long and detailed, so this is kind of(haha) the short version. My mother was only diagnosed with FTD in January of 2012. However, she has been categorized in the moderate to early-advanced stages. Signs that pointed towards something being wronged became apparent when I was a teenager(about 8 years ago). Since then, she has changed jobs multiple times, never staying anywhere for more than 2 years. My mother would always say that she just got tired of that job, but she would also get fired occasionally as well. She was a good worker, so I never understood why and she wasn't able to tell me why. She would also change friends the same way. She would have a new best friend every few years. When asked what happened to her other friends, the answer was always, 'I don't know. They won't talk to me anymore.'. She would change hobbies the same way always adapting to what she thought somebody else expected of her.
When she lost he last job that she had in the summer of 2011, she eventually had to move in with my aunt and me due to finances. I'd been living my aunt for the past 6 years while I tried to figure out my life and finish school. I was trying to move out in a few months and try to be an independent adult. Now that my mom had moved in, and something was obviously wrong, those plans got put on hold.
On a Saturday in December, both my aunt and I had had enough. To be honest, my mom had just been sitting around the house and deteriorating before our eyes for the past week or so. She wasn't trying to find a job, not helping out at home, and was content to just sit and be a slug. Her mental state had declined as well as her communication skills. We went to the emergency room, not knowing what else to do. After a 14 hour long stay, Mom was admitted to the psychiatric unit due to being suicidal. After a week, she was released with a recommendation of following up with a neurologist. We saw the neurologist a month later. After cognitive, motor, and language tests, we received the diagnoses of frontotemporal dementia. There is no real treatment. Alzheimer's drugs can somewhat help stabilize, but not very successfully. She takes 5 different prescriptions a day, and it seems that every time we go to the doctor we get a new one. The true blessing in this disease, is that she doesn't really know what's going on. My aunt and I have explained it, as well as the neurologist. She just continues on her way, doing what she can everyday. She's 58 and doesn't realize that her time has been cut drastically short in a very harsh and cruel manner. My aunt and I are reminded of it everyday when she calls us the wrong name, or can't remember what she did that afternoon. FTD now rules our lives. From making sure that moms food is cut into bite sized pieces to helping her choose what to wear each day. She goes to an adult daycare facility 3 days a week. Aside from making sure that she's safe, the day center makes sure that mom is able to do things that she still can with a sense of pride and accomplishment. My mom still loves to crochet, but can only make these very odd looking BIG hats. She doesn't know that she's making a completely useless thing, although we have found that they make good chair covers!, but she enjoys it and it makes her use her brain. As summer comes, we're not sure what else will happen. But life is a journey and always full of surprises.
Tuesday, May 8, 2012
My First Blog and What is Frontotemporal Dementia
So, I'm blogging. I've never done this before, but I've found that I need a place to write all my thoughts down.
Let me tell you a little bit about myself & my life -
I'm in my mid-20's. I'm a massage therapist. I'm an avid hockey fan. My mother has frontotemporal dementia(FTD).
Frontotemporal dementia is basically brain atrophy, or shrinkage, of the brain. It affects the front and temporal lobes of the brain. These sections control logic, emotions, language, movement, speech, and personality. The disease is often misdiagnosed as a psychiatric or mental illness, and patients have can often go years with before getting the correct diagnosis. From the Association of Frontotemporal Degeneration(http://www.theaftd.org/), here is an outline:
FTD represents an estimated 10%-20% of all dementia cases and is recognized as one of the most common dementias affecting a younger population. It is estimated that FTD affects approximately 50,000-60,000 Americans. FTD occurs equally in men and women. In a small percentage of cases, it is inherited.
While there are currently no treatments to slow or stop the progression of the disease, FTD research is expanding, producing greater understanding of the disorders. We anticipate that this knowledge will result in a growing number of potential therapeutics entering clinical testing within the next few years.
Frontotemporal degeneration characterized by loss of empathy and increasingly inappropriate social behavior is known clinically as behavioral variant FTD (bvFTD), Pick’s disease, or frontal variant FTD (fvFTD). When problems in language are prominent, the clinical syndrome is known as primary progressive aphasia (PPA). FTD with motor neuron disease, corticobasal syndrome, and progressive supranuclear palsy are subtypes of FTD characterized by muscle weakness, rigidity and/or parkinsonian symptoms.
Behavioral presentationBehavioral changes are typically seen as changes in personality, emotional blunting or loss of empathy that result in increasingly inappropriate social behavior. People gradually become less involved in routine daily activities and withdraw emotionally from others. Despite acting this way at home, they may also become disinhibited when in public or with strangers. Unusual behaviors may include swearing, overeating (especially carbohydrates) or drinking, impulsivity, shoplifting, hypersexual behavior and deterioration in personal hygiene habits. Accompanying this is a decreasing self-awareness: the patient displays little insight into how inappropriate his or her behavior is, and little or no concern for its effect on other people, including family and friends. Patients may also display repetitive, stereotyped behaviors, such as hand clapping, humming the same song over and over, or walking to the same place day after day.
Language presentation
Language deficits experienced by FTD patients are distinguished by principally two presenting issues: problems with expression of language and problems with word meaning. People with nonfluent/agrammatic PPA become hesitant in their speech and begin to talk less, but appear to retain the meaning of words longer. In semantic variant PPA, people experience a progressive deterioration of understanding words and recognizing objects, but retain the ability to produce fluent speech. A third variant, logopenic PPA, is characterized by deterioration in a person’s ability to retrieve words.
Movement presentation
Problems in motor skills and movement characterize two frontotemporal disorders. Corticobasal syndrome (CBS) begins with a decrease in movement on one side of the body and muscle rigidity with a tremor. Progressive supranuclear palsy (PSP) causes problems with control of gait and balance. The inability to coordinate eye movements is a characteristic symptom of PSP. Problems similar to those seen in Parkinson’s disease or ALS may also be seen.
Cognitive and emotional symptoms
Damage to the brain’s frontal and temporal lobes affect complex thinking and reasoning abilities which can result in other symptoms commonly associated with FTD. Increasing impairment in “executive functions” affects a person’s ability to plan, organize and execute activities, while emotional changes impact relationships. Symptoms may include:
Let me tell you a little bit about myself & my life -
I'm in my mid-20's. I'm a massage therapist. I'm an avid hockey fan. My mother has frontotemporal dementia(FTD).
Frontotemporal dementia is basically brain atrophy, or shrinkage, of the brain. It affects the front and temporal lobes of the brain. These sections control logic, emotions, language, movement, speech, and personality. The disease is often misdiagnosed as a psychiatric or mental illness, and patients have can often go years with before getting the correct diagnosis. From the Association of Frontotemporal Degeneration(http://www.theaftd.org/), here is an outline:
Frontotemporal Degeneration
Frontotemporal degeneration (FTD) is a disease process that results in progressive damage to the anterior temporal and/or frontal lobes of the brain. It causes a group of brain disorders that share many clinical features. The hallmark of FTD is a gradual, progressive decline in behavior and/or language that often has a relatively young age at onset (mid-50s to 60s), but has been seen as early as 21 and as late as 80 years. As the disease progresses, it becomes increasingly difficult for people to plan or organize activities, behave appropriately in social or work settings, interact with others, and care for oneself, resulting in increasing dependency.FTD represents an estimated 10%-20% of all dementia cases and is recognized as one of the most common dementias affecting a younger population. It is estimated that FTD affects approximately 50,000-60,000 Americans. FTD occurs equally in men and women. In a small percentage of cases, it is inherited.
While there are currently no treatments to slow or stop the progression of the disease, FTD research is expanding, producing greater understanding of the disorders. We anticipate that this knowledge will result in a growing number of potential therapeutics entering clinical testing within the next few years.
Brain Image
Clinical Presentations
The frontal lobes of the brain are associated with decision making and control of behavior, and the temporal lobes with emotion and language. While FTD is marked by a range of behavioral, personality, and cognitive changes, several subtypes of the disorder have been identified based on distinct symptoms and clinical presentation.Frontotemporal degeneration characterized by loss of empathy and increasingly inappropriate social behavior is known clinically as behavioral variant FTD (bvFTD), Pick’s disease, or frontal variant FTD (fvFTD). When problems in language are prominent, the clinical syndrome is known as primary progressive aphasia (PPA). FTD with motor neuron disease, corticobasal syndrome, and progressive supranuclear palsy are subtypes of FTD characterized by muscle weakness, rigidity and/or parkinsonian symptoms.
Behavioral presentationBehavioral changes are typically seen as changes in personality, emotional blunting or loss of empathy that result in increasingly inappropriate social behavior. People gradually become less involved in routine daily activities and withdraw emotionally from others. Despite acting this way at home, they may also become disinhibited when in public or with strangers. Unusual behaviors may include swearing, overeating (especially carbohydrates) or drinking, impulsivity, shoplifting, hypersexual behavior and deterioration in personal hygiene habits. Accompanying this is a decreasing self-awareness: the patient displays little insight into how inappropriate his or her behavior is, and little or no concern for its effect on other people, including family and friends. Patients may also display repetitive, stereotyped behaviors, such as hand clapping, humming the same song over and over, or walking to the same place day after day.
Language presentation
Language deficits experienced by FTD patients are distinguished by principally two presenting issues: problems with expression of language and problems with word meaning. People with nonfluent/agrammatic PPA become hesitant in their speech and begin to talk less, but appear to retain the meaning of words longer. In semantic variant PPA, people experience a progressive deterioration of understanding words and recognizing objects, but retain the ability to produce fluent speech. A third variant, logopenic PPA, is characterized by deterioration in a person’s ability to retrieve words.
Movement presentation
Problems in motor skills and movement characterize two frontotemporal disorders. Corticobasal syndrome (CBS) begins with a decrease in movement on one side of the body and muscle rigidity with a tremor. Progressive supranuclear palsy (PSP) causes problems with control of gait and balance. The inability to coordinate eye movements is a characteristic symptom of PSP. Problems similar to those seen in Parkinson’s disease or ALS may also be seen.
Cognitive and emotional symptoms
Damage to the brain’s frontal and temporal lobes affect complex thinking and reasoning abilities which can result in other symptoms commonly associated with FTD. Increasing impairment in “executive functions” affects a person’s ability to plan, organize and execute activities, while emotional changes impact relationships. Symptoms may include:
- Distractibility and impersistence, increasing difficulty staying on task mentally.
- Mental rigidity and inflexibility, insistence on having his or her own way, increasing difficulty adapting to new or changing circumstances.
- Planning and problem solving impairments, abstract reasoning decreases. Examples of this would include difficulty coordinating the cooking of a meal or making a shopping list and performing necessary errands.
- Poor financial judgment, impulsive spending or financial risk-taking.
- Emotional blunting or abnormal emotional reactions to others. Examples would include being inappropriately calm when a significant other has been hurt or is threatened, or being unfeeling or self-centered when empathy would usually be called for (such as a funeral). Some show emotions that may be exaggerated or inappropriate for the circumstance.
- Apathy, reduced initiative, lack of motivation and an apparent loss of interest in previously-enjoyed hobbies and social activities.
- Lack of insight into one’s behavior develops early; the patient does not recognize changes in his or her own behaviors and shows no concern for the effect these behaviors on others, including loved ones.
- Mood changes that can be abrupt and frequent.
Welcome
This is my blog that I'm starting as a sounding board and support group for caregivers of frontotemporal dementia patients. More to come later on what FTD is and my family's story.
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