I can remember the first time I heard about Frontotemporal Degeneration. I was at a client’s house, our on his balcony taking a phone call, and the person on the other end–my boss–told me she had a new client she thought would be great for me and me for him–it would be a “perfect match,” she said. She told me that he had STD–remember, on the phone F sounds just like S. She corrected me when I said “Sexually Transmitted Disease???” I just didn’t see how that would be a good match for me. So I met him, and we hit it off.
I learned that his disease is very similar to what I have had to deal with for the past 26 years (April 8 is the anniversary of my wreck.). For the most part, I deal with finding the right words and maintaining a constant stream of thought without getting too lost in the mix while talking. So after about 6 months, I started to find out more about FTD and its symptoms. The following article was written by Alzheimer’s and Dementia Expert, Esther Heerema, MSW and is from AboutHealth.com.
Frontotemporal dementia (FTD) is a type of dementia that has often been called Pick’s disease. It encompasses a group of disorders that affect behavior, emotions, communication and cognition. Other names used for FTD include:
- frontotemporal degeneration
- frontal temporal dementia
- Pick’s complex
- frontotemporal lobar degeneration
In FTD, the frontal and temporal anterior lobes of the brain are affected and shrink in size. FTD typically strikes relatively young (50s to 60s), but has been identified in people as young as 21 and as old as the late 80s. About 60% of cases of FTD are people between the ages of 45 and 64.
Arnold Pick first identified the abnormal tau protein collections in the brain (called Pick’s bodies) in 1892. Pick’s bodies are present in some types of FTD and can only be seen under a microscope during an autopsy.
Types of FTD
Four disorders that fall into the FTD category include:
- Behavioral Variant Frontotemporal Dementia
As the name alludes to, behavioral variant FTD significantly impacts behavior, causing socially inappropriate interactions and emotions.
- Primary Progressive Aphasia
The primary component of this type of FTD is aphasia, which refers to an impairment in language ability. This can affect both the ability to communicate and understand.
- Progressive Supranuclear Palsy
Supranuclear palsy affects balance and movement, as well as cognitive abilities. A distinct symptom is impaired eye movement.
- Corticobasal Degeneration
Symptoms for corticobasal degeneration often appear as muscle weakness and tremors, and usually begin on only one side of the body. Problems with memory and behavior also develop as this disorder progresses.
Symptoms of FTD
- Behavior Changes
People with FTD often demonstrate socially inappropriate behavior, such as tactless comments, lack of insight or empathy, distractibility, increased interest in sex, or significant changes in food preferences. Others display poor hygiene, repetitive comments or behaviors, low energy and poor motivation. They may also have a flat or blunted affect, meaning that their faces display little or no expression of emotion, including sadness, joy, or anger.
- Communication Changes
FTD often affects the ability to communicate in both expressive speech (the ability to use words to express yourself) and receptive speech (the ability to understand speech). Individuals may have trouble finding the right word to say, speak very hesitantly and slowly, have a hard time reading and writing accurately, and not be able to form sentences in a way that makes sense.
- Movement Changes
FTD often affects the ability to control movement and other motor actions. Those with FTD may fall frequently or have unwanted arm and leg movements or shakiness.
Interestingly, a person’s memory and understanding of the space around them often remain relatively intact, especially in the earlier stages.
How Do FTD and Alzheimer’s Differ?
In Alzheimer’s, the typical initial symptoms are short-term memory impairment and difficulty learning something new. In FTD, the memory usually remains intact initially; early symptoms include difficulty with appropriate social interactions and emotions, as well as some language challenges.FTD and Alzheimer’s also differ in how the brain is physically affected. FTD mainly affects the brain’s frontal and temporal lobes; while Alzheimer’s tends to impact most areas of the brain.
FTD also targets younger individuals. The average age of onset for FTD is about 60 years old. While some people have early onset Alzheimer’s, the majority of patients are over 65 and many of those are well into their 70’s or 80’s.
What Causes FTD?
The cause of FTD is not known. While the majority of cases of FTD appear to develop by chance, genetics does play a role in some cases. Approximately 10% of cases can be traced back to a change in a single gene. This gene mutation is directly inherited, meaning that if your mother or father has that specific gene for FTD, you have a 50% chance of developing FTD.An additional 20% to 40% of people diagnosed with FTD have a familial connection where more than one relative over two or more generations has been diagnosed with FTD.
Similar to diagnosing Alzheimer’s disease, there is no single test that can diagnose FTD. Patients typically undergo some imaging testing such as an MRI or a PET scan; cognitive testing to measure memory and language abilities; physical movement testing; possibly a spinal tap; and some blood tests. Diagnosis is made by gathering all of the results from these tests, ruling out other causes such as vitamin B12 deficiency or infections, and comparing your symptoms to other cases of FTD. It is important that a neurologist familiar with FTD and other types of dementia be involved in this evaluation since certain aspects of FTD mimic other disorders.
There is no medication that targets this type of dementia, so the treatment goal is to control symptoms as much as possible. Physicians may prescribe medications that are often used for the movement problems in Parkinson’s disease, including Sinemet. Sometimes the behaviors of FTD are addressed with antipsychotic medications if non-drug approaches are ineffective. Antidepressant medications, specifically selective serotonin reuptake inhibitors (SSRIs), have shown some benefit in treating some of the obsessive or compulsive behaviors of FTD. Some physicians will also prescribe medications usually given to Alzheimer’s patients, including cholinesterase inhibitors. Research, however, has not clearly shown these medications to be effective for FTD yet.Occupational and physical therapy can also benefit patients by helping maintain or slow the deterioration of the motor and movement abilities, while speech therapy can sometimes assist with communication deficits.
Prevalence of Frontotemporal Dementia
About 10% to 20% of all dementias are FTD, which translates to an estimated 50,000 to 60,000 Americans. FTD is one of the more common types of dementia in adults younger than age 65, and it is more common in men than women.
The prognosis of FTD is poor. Life expectancy ranges anywhere from from two to 20 years after diagnosis, depending on the speed of progression and the presence of other diseases. FTD does not cause death, but it makes fighting other illnesses and infections more difficult.Sources:
The Association for Frontotemporal Degeneration. Diagnosis. Accessed December 12, 2011. http://www.theaftd.org/frontotemporal-degeneration/diagnosis
The Association for Frontotemporal Degeneration. Frontotemporal Degeneration. Accessed December 12, 2011. http://www.theaftd.org/frontotemporal-degeneration/ftd-overview
The Association for Frontotemporal Degeneration. Genetics. Accessed December 12, 2011. http://www.theaftd.org/frontotemporal-degeneration/genetics
And as always, keep getting better. Until next time…
As survivors of TBIs or for that matter, any injury, we have to learn how to make the most of our lives given the abilities we still have. If a lawyer suddenly discovers that he is for the first time artistic, who is to say that he was better off before his injury? If a businessman is punched in the face and now cannot remember day to day, but now helps others with addictions and phobias, in essence he provides a better quality of life for both himself and his clients, who is to say he is not better off?
I sustained my TBI back in April of 1989 when I was only 16 years old. I don’t know if I was cruel or simply a self-centered teenager, but back then I could never imagine myself doing what I do now for a living. I was a bit of a bully and although I could be stubborn as Hell, the sight of blood or other bodily fluids made me nauseous. How time changes things (not to mention being a father and somehow managing to become “nose-blind” to odors and other such niceties.
Being employed as a caregiver to the older population and those with disabilities, I have done things that before I thought I would never do. For instance, I had a client take a dump in the shower. That one threw me. I was a bit angry and then I realized that he didn’t do it out of spite, he needed to drop a deuce, so he did.
Now when people say they cannot see themselves doing what I am regularly called on to do, I just think, I really don’t have a choice…I just can’t leave the patients lying in crap or sitting in a we diaper. I know others in my same situation can find a way to ignore or neglect to care appropriately for the elderly, but I cannot. It’s kind of like kids. If you can’t see yourself treating them badly, chances are pretty good you’re not going to treat old people badly.
Back to my original thought, though. I’m a caregiver, whereas before I was the center of my own univese. I like to think, and I probably do this, that I’m enriching the quality of the lives of my clients. Although I cannot serve in the military because of my TBI, I feel that I serve my country by taking care of our veterans during a time in their lives when they need to be taken care of. (I do have quite a few veteran clients.)
So who is to say that I’d–or the world for that matter–would be better off had I not been in that horrible car crash. Yeah, it left me like a toddler, having to learn even the most basic skills again, but I’m taking care of others now. And if I hadn’t had the wreck, it’s unlikely that I would have met my wife and we would not have had our son. If I can make a literary recommendation, read Ray Bradbury’s “The Time Machine.”
Just something to think about. Until next time, keep getting better…
Enough already! I’m tired of this nasty weather, short days and essentially NO sunlight to speak of. That’s right, Punxsutawney Phil or no, Winter, you need to get a move one. I’ll let you have your records, I just want you to end right now. (Side note, we did break the record for being the coldest it has been in FOREVER….) It was fun for a little while and then it just got old.
I’ve been missing the summer just about all year…Let’s see in 2013, hard to believe it’s been almost 2 years ago! I was working as a special needs counselor at a camp where we were outside 95% of the time. That was all summer! Then last summer I was a caregiver for several different clients. At least four days a week, I was inside with my clients. Most of the time they were cold, so they didnt’ want to go outside, which, when you think about it, wasn’t that warm even when it was 80 degrees with a slight breeze blowing.
Right now, I’m looking out the window watching the snow come down beautifully, softly onto what I can only assume is a sheet of ice. It’s been raining for days, and sleet or freezing rain woke me a couple of times beating on the window of my bedroom. So, Ol’ Man Winter, you gotta go. As if this weather weren’t bad enough, over the past week or so, we’ve had springlike temperatures here in Middle Tennessee.
All this gloomy weather, including the cold temps, makes people depressed. SAD–Seasonal Affective Disorder–is real and affects 1 in 10 people. And that’s more than just being blue because of the rainy weather. People with brain injury are more likely to become depressed and affected by external situations over which they have no control. I’ve noticed that when I don’t get as much sun as I need, I tend to become sad, or a bit depressed–nothing much but jsut a little.
When you add this to the conditons of having a brain injury, it can become much more severe if not disastrous. The injured brain has a protien, I think it’s called the T1, that attaches itself to the neurons of the brain, which can in turn make the brain more likely to become depressed.
Being a full-time caregiver, I have clients who have suffered many different afflictions of the brain. One particular client I have is diagnosed with Normal Pressure Hydrocephalus. Unfamiliar with this condition, I contacted the Hydrocephalus Support Group in Seattle, Wash. for more information about it. Thanks to Diana for sending me an informative email.
What is Normal Pressure Hydrocephalus?
The build up of cerebral spinal fluid (CSF) puts pressure on the brain itself, causing damage. CSF is there to cushion and protect the brain and spinal cord from minor bumps and shakes. The CSF moves around the brain in ventricles, pockets around the brain, supplying nutrients and removing waste products through the veins in the head.
“Hydrocephalus is a condition in which there is too much CSF in the ventricles. This occurs when the natural system for draining and absorbing extra CSF does not work right. The ventricles enlarge to accommodate the extra fluid and then press on different parts of the brain.” The inside of the cranium is not smooth like the outside we have all seen in science class. There are crags and fairly sharp points which can cause serious damage if the brain is slammed or pushed into them by some outside force.
NPH usually occurs in older adults when a blockage occurs preventing the CSF from being removed. Gradually the ventricles enlarge, giving space for the excess CSF. This is why the symptoms of NPH occur gradually, unlike with other TBIs where there is a clear loss of function or ability. The term “normal pressure” is somewhat misleading.
The damage inflicted by the protrusions of the indside of the skull differs from person to person. Therefore, a neurologist would need to be contacted to determine what damage had been caused on a case-by-case basis.
What are the Symptoms of NPH?
Untreated/unmanaged hydrocephalus (NPH or any of the other types of the condition) causes damage to the brain itself. In some cases that damage can go so far as to cause death.Some of the symptoms of NPH include a shuffling gait and downcast (sunset) eyes, confusion & headaches (sometimes with light or sound sensitivity). Often the sound + light sensitivity are thought to be migraines, but that can also be a symptom of what we call a fluid headache.
Some of the other symptoms include those commonly associated with dimentias, including symptoms of Alzheimer’s & Parkinson’s, which is why 10-15 percent of cases are first midiagnosed as any of these, before proper diagnosis is made. That can leave the person significantly compromised unnecessarily, since the damage is most often permanent.
Most often hydrocephalus affects the legs, the bladder and higher “cognitive” functions, such as reasoning, problem solving, memory and speaking. Most of the time, NPH causes loss of control of the bladder, causing urinary incontinence, and occasionally the bowels.
Is there Any Treatment for NPH?
Often, one of the best ways to manage NPH is to place a shunt (a drain from the head removing the excessive Cerebral Spinal Fluid
There is also a lot fear surrounding hydrocephalus, whatever the type is that a patient has. The fear of having a shunt (the shunt doesn’t go into the brain itself, it goes into the area around the brain where the cerebral spinal fluid (csf) resides. The shunt simply drains excess fluid to maintain a healthy pressure level. Although the placing of a shunt can alleviate many of the symptoms, surgery can often induce anxiety and a sense of panic–especially when it involves the brain.
What are Common Misconceptions about NPH?
- Some think that their head is going to explode. Not going to happen. Some think that they are going to lose their minds. Not going to happen–especially with early treatment. Anyone who has experienced allergies and has had a sinus headache has felt like this. In neither case will the person’s head explode.
- There is also a myth that hydrocephalus means that there is a loss of a quality of life, which doesn’t necessarily have to be the case. Especially with today’s drugs and proper management, Hydrocephalus, including NPH, is a very treatable, manageable condition, especially if found early. My cleint enjoys seeing his grandchildren and performs the typical activities a normal 85 year old man does. He has a sharp wit most of the time, and his family says he’s as stubborn as he ever was. So the quality of life does not change dramatically and the patient maintains many of his characteristics from earlier in life. Unfortunately, this is not the case for many traumatic brain injuries (TBIs). I personally know that I experienced a total personality shift after my car wreck. Prior to it, I was shy, almost introverted. Immediately after, I developed traits of being a “people person” and felt at home in a crowd although I was often distracted.
- There is also the myth that one has to live in fear, at home, behind closed doors. Not true. My client gets out, still goes to church services, and even goes shopping on occasion. The biggest thing hindering him is his mobility which is to be expected with someone of his age.
In essence, these are some of the characteristics of hydrocephalus–both managed (NPH) and unmanaged–and the common fears surrounding the condition. If you have any questions or comments, feel free to leave them below.
Information taken from WebMD/hyrocephalus and the Hydrocephalus Support Group, Inc.
First off, let’s talk language. I don’t know where most people are in understanding the nomenclature of the brain injury world. (Seems like every time I mention a TBI, people say, “What? What is that?”
So a TBI is a Traumatic Brain Injury. TBI. I pretty much use the term “head injury” interchangeably with brain injury. A coma is a loss of consciousness of more than 5 minutes during which time new memories have difficulties in being laid down. The Glasgow Coma Scale is what people typically use to describe the severity of comas. For our purposes, we don’t need to understand the numbers, just realize that the Glasgow Coma Scale starts at 15 and the severity increases as the numbers decrease to 1.
Characteristics of TBIs
- Since the majority of injuries involve coupcontrecoup, the front part of the brain is typically injured since there are sharp edges on the inside of the skull. Coupcontrecoup is the characteristic of the brain to slosh around inside the head like jello. And since the brain “sloshes” from one side of the head to the other, pretty much wherever the head is impacted, it affects the frontal and temporal lobes. The main tasks of the frontal lobes are higher-order, executive functions–essentially, the ability to plan and follow multi-step directions. That’s why so many people who have been either hit in the head with a bat or other object or have been in a car wreck have such a hard time sitting and listening to directions before jumping right into action. Personally, I was misdiagnosed as having adult ADD as a result of my TBI, but was later told–some 11 years later–that in most cases ADD didn’t come from a TBI. It might have been present before, but it rarely comes as a result of having brain trauma.
- The temporal lobes, which are located as the name suggests on either side of the brain just above the temples. The chief responsible of these lobes are concerning language. Both spoken language and the written word. Finding the correct words for appropriate situations or for the appropriate object. For example, a survivor of a TBI may have difficulty finding the word for door, but may think of an umbrella when someone says the word shelf to them. Therefore, patients/survivors who present this injury are often thought of as stoned, high or plain stupid. I know that people have thought that about me–especially when I’ve been trying to recollect a story from the past without omitting any details.
- Often damages to the frontotemporal areas of the brain are also slower visual and tactile reaction times. This may mean that the patient may take longer to truly “know” and understand what a red light means. Sometimes my wife will say, didn’t you see that light change?” I did, but it didn’t mean anything to me. It just didn’t mean anything to me. Similarly, the reaction times may be longer; for example, the survivor may not be able to feel his hand burn when he places it on a hot stove eye the way a non-TBI-er would. Therefore, it would be more likely that his hand could be burned.
What we’ve mentioned here are just a hint of what someone who has a TBI can experience. If you or soemone you know has a TBI, you may find some solace in knowing what they experience. Feel free to leave a comment below of your experience or of someone you know. And of course, if you have any questions, leave them below.
Everyone, parent or not, knows that kids fall. My son ran headlong into doors, fell off tables, and even hit the floor when I fell down the stairs carrying him. (That’s a long story–I’ll try to get to it later…) But did you know how many Brain Injuries (BIs) are caused by falls?
In the Nov. 13 New England Journal of Medicine, the results of a study of more than 43,000 children led by Dr. Nathan Kuppermann, a professor in the departments of emergency medicine and pediatrics at the University of California, Davis School of Medicine were published. The leading cause of BIs for children, individuals under the age of 18, was falls.
For parents, the numbers can be frightening: under 2 years of age, 77% of BI are the result of falls. Seventy-seven! I don’t know if that’s a reassuring fact–Maybe there aren’t that many BIs in infants and newborns. For children between 2 and 12, the number is cut by half, and is only 38 percent.
For children between age 13-17, the leading causes of BI were assaults, sports, and car crashes. Over recent years, we have seen an increase in the use of bike helmets and even helmets when skiing. That’s reassuring. I began wearing a bike helmet–not by choice, mind you–after a bicycle accident I had when I lost my left front tooth.
I was trying to slalom between acorns on the street and lost control of my bike throwing me, teeth first, into the pavement. I don’t remember much after that for several hours just that I thought my parents wouldn’t notice the gap in my smile with my left front tooth was missing. (Duh!) So after that, I was forced to wear a helmet whenever I got on a bike or a skateboard.
“Bike helmets and seatbelts can save your kid’s brain,” Dr. Kuppermann said.
Fewer than half the kids who were injured in car wrecks were wearing seatbelts. The kids injured in bike accidents were wearing helmets less than 20% of the time, he said. While a seatbelt or helmet won’t guarantee you won’t get a BI, it certainly cuts the chances. When I had my car crash, I was wearing my seatbelt. If I weren’t, I’d be dead. The police report said I was unrestrained, but my mother told me I had terrible bruises and abrasions where the seatbelt had been. I figure the police just reported what they saw: I wasn’t wearing a seatbelt at the time they arrived to the scene.
Because of the prevalence of seatbelts over recent years, the deaths from car crashes has dropped dramatically.
Dr. John Kuluz, director of traumatic brain injury and neurorehabilitation at Miami Children’s Hospital, said, “According to the U.S. Centers for Disease Control and Prevention, deaths among children from car accidents has dropped 40 percent.” (Taken from HealthDay News)
While seatbelts cannot take all the credit for this fact, they, combined with airbags, have brought the numbers of severe TBIs down significantly. Kuluz said that 98% of head injuries seen in ERs were classified as “mild.”
Mild takes on a whole new definition here: it refers to the force or impact causing the trauma; it does NOT refer to the problems attributed to it. A mild TBI is the result of the forceful motion of the head or some other object impacting the head, causing a brief period of unconsciousness (less than 30 minutes). (From TraumaticBrainInjury.com)
Before my MVA, I was athletic, and quite popular–even if I was a bit of a nerd. After my wreck, I lost all my athletic ability, a good bit of my muscle mass. What I gained was a sense of the world revolving around me. I was in the spotlight all the time. And when it was on someone else, I typically acted out–doing something inappropriate to gain the attention of the people around me, whether in a good way or a bad way. I was in the 99 percentile in math, above average in the English/language areas, but I really didn’t excel in English. I could dissect a sentence and my grammar was almost impecible, but I really didn’t enjoy literature or writing.
However, the study did not include concussions, which simply jostle the brain, but rather more serious injuries which caused bleeding inside the brain. Reported in the New England Journal of Medicine, published on Nov. 13, Kuppermann explains what the purpose of the study really was.
“The study gives a picture of how children suffer serious head injuries, and how often they get CT scans and how often they undergo brain surgery,” Kuppermann said.
For the study, the researchers used data collected from 2004 to 2006 from emergency departments in 25 U.S. hospitals. If you have any questions or concerns, feel free to leave a comment below or leave it in the contact us box.
Originally posted on Life After Traumatic Brain Injury:
Because the occipital lobes are located at the back of the skull, they are not as frequently injured as other parts of the brain. However their role is extremely important when it comes to the survivor’s vision or lack thereof. Essentially, this region of the brain is the visual cortex–the portion concerned with all things visual.
The curious thing about the occipital lobes is that no matter which side of is damaged, the field of vision is affected more or less equally on both sides. Unlike the frontal or parietal lobes, where injury to one side or the other has a greater effect on either motor movement or some other ability, any significant injury to the occipital lobes produces more or less a unified change in vision.
And although the occipital lobes aren’t frequently injured, any significant trauma to the brain can cause a…
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