Our Mission

* Educate healthcare professionals

* Establish a clinic for FTD sufferers

* Support research

Wednesday, December 31, 2008

Call Anytime

I know sometimes it all gets overwhelming and especially this time of year with all the people and festivities. If I can help in anyway, please let me know...just leave a comment and I will get my number to you.

Sometimes it helps to talk to someone familiar with Frontotemporal Dementia.

I will be meeting with the doctors in Houston in January and look forward to learning what new findings there have been since we last spoke....I hope there is some good news.

Will keep you posted.

Monday, December 29, 2008

Getting Organized for 2009

Spent part of the day gathering up old notes about my brother and sister....notes of their behaviors before we knew what was going on with them. Mother was very good about journaling and I kept all the online emails and research I was doing early on. I had forgotten how much information I had accumulated.....boxes of internet research on the brain.

I just had to have some time away from it all .... seems selfish I know. I packed all this away during our move back to the East Coast. It is definately time to get it out and use it to help other people.

I know it would have made a world of difference if I had someone to talk with about Frontotemporal Dementia and what my sister was going through.

Sunday, December 28, 2008

Changes in Speech and Handwriting

Found 2 birthday cards Michael sent mom one month before his death. One was signed "Have a Nice Day" and the other signed "Merry Birthday". Now I know, both were real clues as to what was going on with him.

He was saying very little at this time and mostly would repeat "Have a Nice Day".

Then for him to say Merry Birthday instead of Happy Birthday.....was out of context for him.

His handwriting was changing as well. Patsy's handwriting changed drastically as well. I noticed her handwriting changed about 7 years before her death. Michael's didn't change until about a year before his death.

Friday, December 26, 2008

Research Hospital for FTD in Houston

Paul E. Schulz, M.D.
Associate Professor of Neurology and NeuroscienceDirector, Neurology Residency ProgramDirector, Cognitive and Behavioral Neurology FellowshipDirector, Neurology FellowshipsDirector, Neurology Grand Rounds CMEDirector, Cognitive Research Group

Clinical Service Area
Neurology - Behavioral Neurology

Behavioral and Cognitive Disorders Neurodegenerative Disorders

Board Certification
American Board of Psychiatry and Neurology, Neurology

Clinic Appointments

Medical School
Boston University School of Medicine, Boston, MA

Neurology, Baylor College of Medicine, Houston, TX

Neurology, Baylor College of Medicine, Houston, TX

Clinical Interests
Dementias, including Alzheimer's disease, vascular dementia, fronto-temporal dementias (FTD), corticobasal ganglionic degeneration, parkinsonism, and manganism. Disorders of thinking, memory, and language. Cognitive impairment in other neurologic disorders such as ALS, Myotonic Dystrophy, and West Nile Virus. Behavioral changes associated with cognitive dysfunction, including anxiety, depressions, mood lability, mania, and apathy. Thought disorders (psychosis) associated with cognitive impairment such as confusion, delusions, hallucinations, misidentifications, misperceptions, and suspiciousness.

Clinic Location
Baylor NeurologySmith Tower6550 Fannin St., Suite 1801Houston, TX 77030

Research Interests
Clinical Research: Frontotemporal dementia (FTD) and FTD associated with amyotrophic lateral sclerosis (ALS), including functional imaging (fMRI) to study social interaction, genetic studies for mutations underlying FTD and ALS, epidemiologic studies of FTD and ALS to ascertain factors that increase or decrease the probability or rate of progression of FTD and ALS, and pathologic approaches of FTD and ALS to ascertain diagnostic accuracy and processes at the cellular level that underlie the disorders; semantic memory, including changes in FTD-ALS, and epilepsy or epilepsy surgery; epidemiologic investigations of dementia to study the frequency, recognition, and treatment of dementia and aggression and anxiety in dementia, and to ascertain risk factors for dementia, which would give clues as to underlying pathophysiology.
Laboratory Research: The normal cellular mechanisms underlying synaptic plasticity, which are changes in the connections between neurons (nerve cells) that contribute to the cellular basis of learning and memory, language development, visuospatial function, emotional changes, etc.- the forms of synaptic plasticity under study include LTP, LTD, and decremental potentiation; using electrophysiologic (extracellular and patch-clamp recording techniques) and genetic approaches to study the induction and expression of these forms of synaptic plasticity, which includes investigating intracellular molecules, transcriptional regulation, and mechanisms of expression; investigating how normal synaptic plasticity mechanisms are disrupted in mouse models of dementia to gain clues as to the mechanisms underlying these disorders; the cellular mechanisms underlying a more rapid form of neuronal loss, i.e. that involved in global cerebral (brain) ischemia, and neuroprotection mechanisms to reduce neuronal loss—the hypothesis being that similar mechanisms may be involved in acute (stroke) and more chronic (neurodegeneration) cell loss.

Saturday, December 20, 2008

Artistic and Musical Abilities

Howard S Kirshner, MD, Professor of Neurology, the doctor that helped me find the wonderful doctors in Houston, wrote Nov 2, 2006 in emedicine, a great article - "Frontal and Temporal Lobe Dementia"

This was one aspect I find very interesting, since both my brother and sister had artistic abilities surface with this disease. Another clue for families. Dr. Kirshner states:

"Some North American authors have included under the FTD category cases in which artistic and musical abilities have actually emerged after the onset of the illness, usually in association with progressive language impairment. "

Friday, December 19, 2008

Thankful for Friends, Family, & Great Doctor's

I heard from a wonderful doctor today, Dr. Paul Schulz, Dept. of Neurology, Baylor College of Medicine, Houston Texas. He was my sister's last doctor there. He was so kind and caring, while helping us understand what was going on with her. He had a challenge as we were over 400 miles away. He and his staff helped this family put a face on the disease of Frontotemporal Dementia.

Since hearing from him today, I can't stop crying....he has meant so much to this family. As much as I have told him all this, he probably doesn't realize it. I am sure he is an angel for many many families.

I am also thankful for friends and family, that have helped me work on getting this information out there and help me plan out 2009.

I am a very blessed individual.

Short List Clues to Identifying FTD or Pick’s Disease

If you wonder things like “Did they have a stroke?” “Are they depressed?” “Are they having problems due to alcohol consumption?” “Why are they acting so strange?” “Are they Schizophrenic?” “Have they lost their mind?” “They would never act like this in their right mind”

If we had seen a published list of behavior changes related to Pick’s or FTD on Good Morning America or Oprah, we might have realized sooner what was going on with them. When I look at the list, I say to myself, why didn‘t I see it, why didn‘t I recognize it sooner? It is like those mind bender puzzles, once you hear the answer, you go OH of course that is the answer.

Here is my list, but my brother and sister were poster children for FTD, so you will see these behaviors on many lists:

Early Stage

More flirtatious with opposite sex
Depressed; felt the world was crashing in on occasion
Compulsive behaviors; my brother used a women’s bathroom in a fine dining restaurant (he would never do that normally). Behaviors out of the norm for them
Would drink alcohol in group situations, makes them feel more confident
Mood changes are slighter in this stage; can get angry, but you generally can reason with them
Start drawing or showing artistic (could be music) abilities

Middle Stage

More reclusive, paranoid behaviors
Talk less
Smiled less
More conscious about spending money
Read less and watch more TV
Stop favorite activities; golf, because not able to make a put anymore
Speech is harder to understand; suspect they may have had a minor stroke
More aggressive behaviors; loose temper easily and can be physically violent
Problems keeping a job
You notice fewer friends around
Inappropriate behaviors; walk in on you in the bathroom/bedroom, change the TV station while you are watching it, pass gas in a restaurant, eat with mouth open, laugh at sad things, just RUDE
Rigid in behaviors. Taking a vacation, you get to airport and they say they have to go home to do their nails.

Later Stage

Repeat familiar phrases; i.e. Have a Nice Day, It’s a Great Day, eventually mute
Flip words around; Merry Birthday
Rarely smile
Crave sweets
Stop cooking, become afraid of using appliances or electronics
Paranoid behavior; shutting the blinds, locking the doors
Inability to function or interact in social or personal situations
Problems with personal hygiene
Repetitive behavior; go to the same store, buy the same candy bar
Rapid mood change, violent, angry
Failure to show concern, empathy, sympathy, compassion
Gain weight, physical changes, they walk differently or slump shoulders
Stop bathing, cleaning house, or doing laundry
Reckless driving
Less writing and signature may change drastically
Urinary incontinence

Wednesday, December 17, 2008

Clinical Trial for FTD

Clinical Trial of Memantine for Frontotemporal Dementia and Semantic Dementia


Pick's not generally passed down in familys!!!

This was interesting...found on National Library of Medicine/National Institutes of Health

Causes od Pick's Disease
People with Pick's disease have abnormal substances (called Pick bodies and Pick cells) inside nerve cells in the damaged areas of the brain. Pick bodies and Pick cells contain an abnormal form of a protein called tau. This protein is found in all nerve cells. But some people with Pick's disease have an abnormal amount or type of this protein. The exact cause of the abnormal form of the protein is unknown. A gene for the disease has not yet been found. Most cases of Pick's disease are not passed down through families.

Pick's disease is rare. It is more common in women than men. It can occur in people as young as 20, but usually begins between ages 40 and 60. The average age at which it begins is 54.

Great website UCSF

I think University of California San Francisco does an excellent job of describing FTD. Twice we sent of Patsy's blood work for confirmation of one of the strains of PICKS. She tested negative. It is the only place in the US that tests for this.

Disease Progression
FTD usually first appears when someone is in their mid-40s to early-60s and causes a steady, gradual decline in the ability to complete the daily activities of life. The disease can last anywhere from three to 17 years from the first symptom until death, with an average duration of eight years after diagnosis.

Behavioral variant FTD

Mild bvFTD

In the first several years, a person with bvFTD (often called Pick's disease or just FTD) tends to exhibit marked behavioral changes such as disinhibition, apathy, loss of sympathy or empathy for others, or overeating. Problems with planning organization and sometimes memory are evident, but the individual is still capable of managing household tasks and self-care with minimal help. However, impairment in judgment can lead to financial indiscretions with potentially catastrophic consequences. Social withdrawal, apathy and less interest in family, friends and hobbies may be evident. At times, they may behave inappropriately with strangers, lose their social manners, act impulsively and even break laws. But at this stage, the behaviors can often be managed with lifestyle and environmental changes (read our practical tips for ideas). A MRI image at this point will show mild atrophy in particular areas of the frontal lobes. [Michael got his 1 ticket for speeding and my sister had an accident; both had previously been very careful drivers. Both slowly withdrew from social situations, friends and family. Both gave up hobbies, sports, and cooking...gradual at first.}

Moderate bvFTD
Over the course of a few years, the symptoms seen in the mild stage will become more pronounced and disabling. You might also notice compulsive behaviors like repetitive urination, hoarding or collecting objects, compulsive cleaning or silly repetitive movements (like stomping on ants). Binge eating may create weight problems and other health issues. The cognitive problems associated with dementia become more pronounced, with mental rigidity, forgetfulness and severe deficits in planning and attention. The MRI image at this point will show that the shrinking of the brain tissue has expanded to larger areas of the frontal lobes, as well as the tips of the temporal lobes and basal ganglia, deeper brain structures involved in motor coordination, cognition, emotions and learning. [My sister would go to the bathroom every 5 minutes (generally not doing anything, just going through the motions), Michael would suck on his teeth, both would repeat short phrases ie "Have a nice day" "Life is good", both craved sweets and would eat as much as you would put in front of them - neither had a weight problem before the disease, but gained weight during this stage. There was no reasoning with them if they wanted to stay or go, would be very rigid about certain things...this varied. Didn't seem to care if they saw their children or grandchildren, didn't want to hold the babies. Patsy would collect straws, sugar packets, plastic cups and hide them in her closet.]

Severe bvFTD
By this point the patient is experiencing profound behavioral symptoms (apathy, loss of empathy, disinhibition) in association with language difficulty and memory loss. They may have trouble coordinating their muscles at this point and may require a wheelchair. Usually 24-hour care is required, whether at home or in an institution. The physical decline and changes that occur throughout the disease course become more and more obvious at this stage. Eventually, the person with FTD may have great difficulty swallowing and moving and they may have urine and/or bowel incontinence. Death from bvFTD is usually caused by the consequences of these physical changes, most commonly infections in the lungs, skin or urinary tract. Although it can vary widely, the time from the first symptom to the end is typically about eight years, whereas the time from diagnosis is, on average, about five years. [Michael died as he was approaching this stage. Patsy progress just as outlined here. The last few months before she passed away, her muscles seemed to not respond at all. She couldn't use her hands and they were swollen.]

RGH E-Bulletin Dementia Therapies

Interesting article about drug therapies for Dementia. I was not familiar with it.

FTD affects the frontal and temporal lobes of the brain

Frontotemporal dementia affects the frontal and temporal lobes of the brain.
Credit: Mayo Foundation for Medical Education and Research

FTD Patients Cannot Detect Sarcasm

Researchers at the University of New South Wales are using sarcasm to determine whether patients have frontotemporal dementia (FTD), otherwise known as Pick's disease:

Researchers at the University of New South Wales found that patients under the age of 65 suffering from frontotemporal dementia (FTD), the second most common form of dementia, cannot detect when someone is being sarcastic.

The study, described by its authors as groundbreaking, helps explain why patients with the condition behave the way they do and why, for example, they are unable to pick up their caregivers' moods, the research showed.

"This is significant because if care-givers are angry, sad or depressed, the patient won't pick this up. It is often very upsetting for family members," said John Hodges, the senior author of the paper published in "Brain".

"(FTD) patients present changes in personality and behaviour. They find it difficult to interact with people, they don't pick up on social cues, they lack empathy, they make bad judgements," he told AFP.
The research, conducted in 2006-07, put 26 sufferers of FTD and 19 Alzheimer's patients through a test in which actors acted out different scenarios using exactly the same words.
While in one scenario, the actors would deliver the lines sincerely, in others they would introduce a thick layer of sarcasm. Patients were then asked if they got the joke, Hodges said.
For example, said Hodges, if a couple were discussing a weekend away and the wife suggested bringing her mother, the husband might say: "Well, that's great, you know how much I like your mother, that will really make it a great weekend."

When the same words were delivered sarcastically and then in a neutral tone, the joke was lost on FTD patients, while the Alzheimer's patients got it.

I wasn't able to find the article in Brain yet because I don't think it is out yet, but here is a similar article on the subject.

A couple comments: Pick's disease is really rare. If you have a relative with dementia odds of overwhelmingly that it is Alzheimer's and not FTD. But it is an interesting finding that patients with FTD fail to understand sarcastic statements while patients with Alzheimer's do.
I guess my question would be, what is the mechanism of perception of sarcasm? It must be the perception of some disconnect between the speaker's perceived intention and their actual statements. We know that mirror neurons -- neurons that are active when you perceive someone else performing a task, neurons that we think are involved in empathy -- are in the frontal lobes, so the loss of these neurons may explain the phenotype. However, at end stage Alzheimer's you also see frontal lobe issues. Maybe there is a stage in Alzheimer's where you would also see loss of sarcasm, although likely by that point they aren't doing much talking anyway.

The most bizarre part about all of this is the thought of putting into practice. Could you visualize going into a patient's bedroom and being sarcastic to see if they had FTD? What if they didn't? You would look like such a jackass.

Furthermore, I know a bunch of healthy people who don't understand sarcasm either. What do you make of them?

Tuesday, December 16, 2008

Crazy Behaviors

In 2001 when we brought my sister to South Texas so we (her son and his wife, mom, my husband, and me) could help care for her and try to figure out what was going on with her. Initially she was living with her son and his wife.

As the holidays approached, one doctor put Patsy on Aricept. Soon after, she took a bottle of pills one day when the kids were at work. She called me and told me what she had done. I asked her why she took the pills and she said she didn't know why. She was hysterical, screaming and crying.

The hospital transferred her to a private psychiatric facility for evaluation. This facility was a joke. They didn't want to deal with her because she had no money for treatment. At this stage, Patsy could still talk and was very good at covering many of the symptoms for short periods of time. However, if you spent any length of time with her, you would see the odd behaviors. They called us all in for a meeting, and after telling us all we were sorry examples for human beings because we couldn't care for her...they released her to a Salvation Army store. We of course went over to gather her up and bring her home.

The scary thing here is, if she had no family, she would have become a street person. Makes you wonder about those poor people out there on the streets that may be ill and their families have all been pushed away.

At this point, she would wander aimlessly and leave the house if you weren’t watching every move. She would walk in on us in our bedroom, walk out the front door, yell and throw a fit if we didn’t drive her to the right store or park in the right parking spot….you get the idea.

We actually were a bit afraid. I remember having thoughts that she might grab a knife and come after us. Seems so odd now when I look back on it. She had turned into someone I didn’t know and the doctors were no help.

Friday, December 12, 2008

Elvis Presley and Christmas Music

This time of year I pull out the cassettes my brother made me. He loved Elvis Presley and for years told us to play Elvis songs at his funeral. We did as he requested, which makes it really hard to listen to those songs today without crying like a baby. Crying in the Chapel and Dixie were just a couple of his favorites.

Tuesday, December 9, 2008

New Drug for Alzheimer’s

Dimebon is the new drug available (research purposes) for Alzheimer's...would it be good for FTD patients? I will email them and ask the question. I guess for the memory problems associated with it, it could. My brother and sister really had good memories until the end.

Tuesday, December 2, 2008

What is Frontotemporal Dementia

Taken from NINDS Frontotemporal Dementia Information Page
(National Institute of Neurological Disorders and Stroke)

What is Frontotemporal Dementia ?
Frontotemporal dementia (FTD) describes a clinical syndrome associated with shrinking of the frontal and temporal anterior lobes of the brain. Originally known as Pick’s disease, the name and classification of FTD has been a topic of discussion for over a century. The current designation of the syndrome groups together Pick’s disease, primary progressive aphasia, and semantic dementia as FTD. Some doctors propose adding corticobasal degeneration and progressive supranuclear palsy to FTD and calling the group Pick Complex. These designations will continue to be debated. As it is defined today, the symptoms of FTD fall into two clinical patterns that involve either (1) changes in behavior, or (2) problems with language. The first type features behavior that can be either impulsive (disinhibited) or bored and listless (apathetic) and includes inappropriate social behavior; lack of social tact; lack of empathy; distractability; loss of insight into the behaviors of oneself and others; an increased interest in sex; changes in food preferences; agitation or, conversely, blunted emotions; neglect of personal hygiene; repetitive or compulsive behavior, and decreased energy and motivation. The second type primarily features symptoms of language disturbance, including difficulty making or understanding speech, often in conjunction with the behavioral type’s symptoms. Spatial skills and memory remain intact. There is a strong genetic component to the disease; FTD often runs in families.

Michael and Patsy had symptoms from both, changes in behavior and problems with language. As the disease progressed, so did the symptoms.

Is there any treatment?
No treatment has been shown to slow the progression of FTD. Behavior modification may help control unacceptable or dangerous behaviors. Aggressive, agitated, or dangerous behaviors could require medication. Anti-depressants have been shown to improve some symptoms.

Anti-depressants did help Patsy with the aggressive and angry behaviors. Sleeping pills helped her to rest at night.

Since we didn’t have clue what was going on with Michael, no drugs were administered, so no benefit here. Two weeks before his death, a doctor prescribed Aricept. A doctor later told us, this was the wrong medication, it actually gave him the ability to plan his death. He said it made the disease speed up in his case, allowing him to think more clearing in short periods of time.

What is the prognosis?
The outcome for people with FTD is poor. The disease progresses steadily and often rapidly, ranging from less than 2 years in some individuals to more than 10 years in others. Eventually some individuals with FTD will need 24-hour care and monitoring at home or in an institutionalized care setting.

After putting together a graph of behaviors over the years, I was able to trace Patsy’s odd behaviors to her late 20’s and Michael’s to his 30’s. Both progressed slowly until they weren’t working on a regular basis and at that time, it seems the disease progressed more rapidly.

What research is being done?
The National Institute of Neurological Disorders and Stroke (NINDS), and other institutes of the National Institutes of Health (NIH), conduct research related to FTD in laboratories at the NIH, and also support additional research through grants to major medical institutions across the country.

I tried to get Patsy into a clinical trial in NIH, that was the only facility at the time with any trials. We couldn't work it out, since it was so far away and there were no government funds or assistance to help with living expenses/lost wages etc with a location so far away from home (DC Area only at that time). Dr. Paul Schulz, a Neurologist in Houston did want our family to participate in on going testing to keep an eye out. As of this date, we have not done that. There is still very little being done in research compared to other diseases. One doctor told me "Today is like the 1980's were to Alzheimer's, we are just starting to work on FTD Education and Treatment."

Thursday, November 27, 2008

Family Tradition

Here I sit on Thanksgiving watching the Dallas Cowboys play. It takes me back to the really great times, when as a family we would gather on this holiday. We would eat a fabulous meal prepared by mom and watch Roger Staubach and later Troy Aikman lead the cowboys through the day. I don't think my brother ever missed a Cowboy's game; he loved them no matter what. I have Michael's cowboy sweatpants....I wear them proudly in his honor....he has to be smiling from heaven.

Sunday, November 23, 2008


This time of year is always a little lonely without Michael and Patsy. They were both such great cooks, but as the illness progressed, they couldn't even operate a microwave. Our family was always about the food. We were raised in a home where dinner was prepared and served by 5pm every day. We all sat around the table and talked about the day. There was never any drama, it was all about the good stuff.

Now it is about the grandchildren. Michael and Patsy have fabulous grandbabies.

Tuesday, November 18, 2008

Time Off

Have company in for next few weeks, so will not be posting much. There was a story this morning on GMA about Andrea Yates, the lady in Houston that drowned her 4 kids. Her doctor, Dr. Ringholtz, was my sister's first doctor in Houston. Dr. Ringholtz was very helpful in educating us on FTD and Picks etc... Last time I communicated with him, he had moved to Emory in Georgia. He was the first doctor FACE to FACE that could explain what was happening to Patsy. With his explainations came some peace, as weird as that may sound.

Wednesday, November 12, 2008

About Damn Time SSA Fast Track for FTD Patients

Social Security has an obligation to provide benefits quickly to applicants whose medical conditions are so serious that their conditions obviously meet disability standards.

Compassionate allowances are a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate allowances will allow Social Security to quickly target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.

Commissioner Astrue has held two Compassionate Allowance public outreach hearings. The first was on rare diseases and the second was on cancers. A third hearing on brain injuries is planned for November 18, 2008.

Frontotemporal Dementia (FTD), Picks Disease -Type A - Adult Is #18 on the list of 50.

It took us 12 months + to get my sister processed. She was able to perform for the doctors early on, so they thought she was just depressed. Not until there was confirmation from a SPECT brain scan, were we able to prove something was happening with her and she couldn't possibly work.

Monday, November 10, 2008

This article from NW University Website http://www.brain.northwestern.edu/mdad/frontal.html

Notes in Red are personal additions based on our family experience

Psychosocial Issues

The psychological, social, family and financial issues that affect individuals with frontotemporal dementia are drastically different from those that affect individuals with Alzheimer's type dementia. When dementia occurs earlier in life, issues such as working, teenage children and financial stress are different from the issues dealt with by individuals who are older and most likely retired. Planning for the family's financial security and for the education of children becomes a difficult prospect when an individual is faced with a dementing illness in the prime of his/her working career. The nature of the symptoms themselves are often embarrassing to family members and there may be loss of friends and other sources of social support. [If we had only known, but this family didn’t. Michael and Patsy masked the symptoms very well for years. The docs told us, because they were intelligent and had a strong work ethic, they were able to function more effectively and longer. The docs asked us if they drank alcohol alot...oh yea they did. Docs said it was common for FTD patients to drink, they do it to cover up the slow creeping symptoms they don't know how to handle. When Michael retired, his decline was more rapid, again the docs defer to “not keeping the brain active”. Once he retired, he wasn’t feeding his brain; socially, educationally, or literally (good foods). Patsy took time off from work to write and publish an instructional manual for Windows 95 & 98 (she was a Microsoft Certified Systems Engineer). Because she moved away from the normal work environment into an home office environment, she wasn’t feeding her brain socially, educationally etc. When she tried to reenter the workforce, her skill sets had declined and was not able to secure the same level of employment. She worked as an admin assistant, but was let go when they claim she made several errors like ordering too many lunches etc. She gave me information (proof, which might dispute some of the reasoning they used to let her go, but I never did anything with it as we were so busy just getting through the days. I figure Humana (the company she worked for) just didn’t know what was going on with her and some of her odd behaviors. Once we moved her to be closer to us, she was not able to get a job, although did volunteer work. This did help her maintain daily functions until the wrong medications were given to her.]

Finally, most adult day programs and residential care facilities are not equipped to address the special needs of the younger patient, especially if the behavioral symptoms are difficult to manage. As more is known about the disease, more policy changes may come into effect. Some residential care and adult day programs are recognizing the needs of the younger dementia patient and are beginning to offer services to meet their needs. Before making any decisions, it is best to investigate your options. [When this happen to our family, there were really no options or assistance for a young person with this illness. Her son and daughter-in-law first took her into their home, until her suicide attempt. Then we took her in for a bit, but almost impossible due to her increasing agitated state and nonstop wandering. When a doctor diagnosed her with “brain shrinkage” we were able to move her to a nursing facility. The facility was not set up for a young adult with this condition. Patsy would memorize the security codes and let her self out of the facility daily].

Depending on severity, a patient with impaired comportment may not be able to manage their daily activities without supervision. They may be at risk for harming themselves or being victimized because they would not be able to recognize their limitations or use proper judgment. Driving is usually unsafe for persons with this diagnosis. [Both Patsy and Michael’s driving habits changed. Michael became more aggressive and Patsy became more tentative and careless. Patsy also claimed a couple times that someone made unwanted sexual advances. Once was during a visit to Virginia. She accepted a ride with a man during one of her walks. She later told me he tried to fondle her breasts. I asked her why she rode with a man she didn’t know and she said she didn’t know, I tried to find out who it was, but she wasn't able to tell me].

Fortunately, there are steps that can be taken to provide a secure environment for the diagnosed person and obtain help for family:

Obtain a psychiatric evaluation from an individual with experience treating people with dementia. Certain medications can help with behavior problems such as agitation and hostility.
[The doctor that finally did this for us
, called my sister directly and told her to come into his office. He told her (without any family in attendance) her brain was shrinking. Imagine a Doctor sitting you down and telling you this with no family support, hard to believe. INSIST on a SPECT or PET scan of the brain, it was not until I INSISTED it be done, the real diagnosis came in. The doctors in Houston told us most doctors are not skilled at diagnosing FTD from MRI’s (which are what Michael and Patsy both previously had). They said you can tell activity, but you really have to know what to look for, whereas a SPECT or PET scan show more definitively what is going on in each area of the brain].

Share information with family and friends. This will help them better understand the patient's behavior and provide an opportunity for them to offer the diagnosed person and their family some support and respite. [Both Michael and Patsy lost many friends due to the illness. The friends just didn’t know why they had changed so much, and understandable so….the family members didn’t know either. Had we known, we certainly would have been more aggressive in getting answers and been more patient].

Encourage the person to attend an early stage support group. Even if the support group is geared toward the person with early Alzheimer's disease, much information will also be relevant to Frontal Lobe Dementia. [The doctors told us FTD patients like Michael and Patsy do not understand or comprehend what is going on..they just accept it. So not sure what a support group for them would do, other than give them a social outlet. I guess this varies due to type of dementia etc.].

Meet with an attorney or financial consultant and make sure Durable Power of Attorney forms have been completed for both health care and finances. Give copies to your doctor. An "elderlaw" attorney who is well-versed in these issues is still an appropriate choice to help you draft these documents or you may obtain the forms at many stationary stores and complete them on your own. [My sister had to be bailed out financially by our mother several times and my brother was allowing mom to pay for things where in the past (his normal behavior) would never have allowed it].

Attend a caregiver support group. Listening to others who are going through similar experiences can be very comforting. They may also aid you in developing new caregiver techniques and learn about different resources within your community. [There was no such critter for us back then, the doctors even suggested we try to get one going…but we were way too tired most days to do anything so ambitious. Now I see there are more options out there…in fact the AFTD site has a support group attached which I have been going on and can see it is a great support for people navigating their way around this challenge - http://www.ftdsupportforum.com/].

Try to remain physically and mentally healthy. Be sure to get regular health check-ups for both the diagnosed person and family. Exercise and eat nutritious meals. Build in time for things that allow you to rejuvenate. [Absolutely essential, or you’ll just go crazy. I had been working in the high tech arena from a home office….I eventually realized, it was necessary to get out of the house and get back to a job where I could socialize and have time away from FTD. When I wasn’t working, I was researching on the Internet for really long periods of time….I was learning a lot, but was also consumed with the illness. The grief from already loosing my brother and slowly loosing my sister was just too much. For the first time in my life I had to seek out a doctor’s assistance to give me DRUGS for depression. I took a medication for 9 months and it made a huge difference for me. Friends that understand can give you the respite you need probably better than anything].

Obtain a driving evaluation: Contact your local Alzheimer's Association for the driving evaluation program near you. [I can see this would be hard to deal with. We finally took the car away from my sister, she didn’t seem to mind. I can see this would be a case by case basis].

Sunday, November 9, 2008

Food & Drink for Thought

These are notes taken from meetings with the specialists in Houston when we would take my sister in for evaluation. These doctors are very well versed in FTD, however handle many other Neurological Disorders.

For ultimate brain function here is what the docs told us:

1. Alcohol taken moderately. Alcohol use can slow down the generation of new cells. With any form of dementia, you need all the new cells you can get…and that applies to most of the population, because eventually we will all experience some form of dementia.
http://blogs.psychologytoday.com/blog/addiction-science/200810/what-does-alcohol-do-your-brain great article about alcohol and the brain

2. Get plenty of sleep. Sleep is underrated. Your brain needs time to recharge. Depression, weight gain, and mania can increase when the brain is deprived of the necessary hours of sleep.

3. Food for the Brain. Blueberries, strawberries, walnuts all really good treats we should intake daily.

People with Alzheimer's may have lower amounts of Acetylcholine (ACh).

Acetylcholine rich foods: egg yolks, peanuts, wheat germ, meat, fish, milk, cheese and veggies
(broccoli, cabbage and cauliflower).

Dopamine generally excites and is involved in movement, attention and learning.

Dopamine rich foods include proteins (meat, milk products, fish, beans, nuts, soy products).

Serotonin usually inhibits and is involved in arousal and sleep, mood, appetite and sensitivity. Also produces feelings of pleasure.

Serotonin rich foods are carbo based (pasta, starchy vegetables, potatoes, cereals, breads).

Vitamins & Minerals - necessary for growth and function of the brain.

B complex - is important for the brain. Vitamins A, C and E are powerful antioxidants and promote and preserve memory in the elderly.

Minerals - also critical to mental function and performance. Magnesium and manganese are needed for brain energy. Sodium, potassium and calcium are important in the thinking process and they facilitate the transmission of messages.

Omega-3 fatty acids - improve learning and memory while helping to fight against such mental disorders as depression, mood disorders, and dementia. Found in salmon and walnuts .

So much of this information is available now on the internet. Fabulous resources available now.

Friday, November 7, 2008

Symptoms of Frontotemporal Dementia

More information from NW University Website, with notes as they pertained to our family http://www.brain.northwestern.edu/mdad/frontal.html

Symptoms of Frontotemporal Dementia

* Impairments in social skills- inappropriate or bizarre social behavior (e.g., eating with one's fingers in public, being overly familiar with strangers)- "loosening" of normal social restraints (e.g., using obscene language or making inappropriate sexual remarks) [My brother became more restrained in public, not wanting to talk or interact, whereas my sister became more flirtatious and extroverted]

*Change in activity level- apathy, withdrawal, loss of interest, lack of motivation, and initiative which may appear to be depression but the patient does not experience sad feelings.- in some instances there is an increase in purposeless activity (e.g., pacing, constant cleaning) or agitation. [This varied as the stages varied. Michael had no desire to do anything, just wanted to watch a couple shows on TV and Patsy would buy a scratch lotto ticket, coke and candy bar every day "because it was a good deal".]

* Decreased Judgment- impairments in financial decision- making (e.g., impulsive spending)- difficulty recognizing consequences of behavior- lack of appreciation for threats to safety (e.g., inviting strangers into home) [Michael was frugal, where Patsy would take out credit cards and spend to the limit. Michael had my mother pay for repairs to his home during a visit. Before his illness, he would never have allowed that. Patsy had to be bailed out financially several times by mom. She couldn't pay her rent because she had spent her money on scratch tickets or computer equipment.]

* Changes in personal habits- lack of concern over personal appearance- irresponsibility- compulsiveness (need to carry out repeated actions that are inappropriate or not relevant to the situation at hand. [Michael and Patsy both gained weight late into the disease. They couldn't cook or operate the kitchen equipment any longer. Michael stopped showering regularly. Both were paranoid about security, would check and double check making sure the blinds were closed and doors locked.]

* Alterations in personality and mood- increased irritability, decreased ability to tolerate frustration [Michael would get frustrated with mom when she was visiting. He would go behind her and make sure she was locking the doors, she‘d open the blinds, he‘d close them. One time he got very angry with her when she pinched his side when he was playing pool (she was playing), he whirled around with the cue in his hand like he was going to hit her (he didn‘t, but here was a man that was very gentle historically…scared mom to death. Patsy got so frustrated when she got a ticket one time and I was trying to help her handle the situation in the courtroom. She got angry with me when I was trying to tell her what to say, or suggested I handle it...she just yell and I backed off. When the time came, she just blubbered not saying anything of consequence and the judge I am sure wondered what in the heck she was even doing there.]

* Changes is one's customary emotional responsiveness- a lack of sympathy or compassion in someone who was typically responsive to others' distress- heightened emotionality in someone who was typically less emotionally responsive. [Both showed less interest in their grandchildren, were afraid to hold them or play with them. You could tell them something sad about another person and they might smile and walk away.]

* I am adding this one. Artistic abilities may excel. For years Patsy would paint, draw, work with clay etc. She created many beautiful pieces, but towards the end, her drawings became dark. Then she got where she couldn't draw at all. Michael was an excellent golfer, but towards the end couldn't make a 6' put. He also started to draw. He drew mostly flowers and mountains. The doctors tell us since our mother was artistic, that ability existed all along, they just never developed it. Once the brain started to atrophy, this section was working overtime to compensate....so they started to paint and draw.

Persons with this form of dementia may look like they have problems in almost all areas of mental function. This is because all mental activity requires attention, concentration and the ability to organize information, all of which are impaired in frontal lobe dementia. Careful testing, however, usually shows that most of the problems stem from a lack of persistence and increased inertia.

Thursday, November 6, 2008

Comportment, Insight, and Reasoning

More information from NW University Website, with notes as they pretained to our family

Comportment, Insight, and Reasoning
Frontotemporal dementia affects the part of the brain that regulates comportment, insight and reasoning. "Comportment" is a term that refers to social behavior, insight, and "appropriateness" in different social contexts. Normal comportment involves having insight and the ability to recognize what behavior is appropriate in a particular social situation and to adapt one's behavior to the situation. For example, a funeral is a solemn event requiring certain types of behavior and decorum. Similarly, while it may be perfectly natural and acceptable to take one's shoes and socks off at home, it is probably not the thing to do while in a restaurant. [My mother wouldn't take Michael to a restaurant anylonger, because of his unusual behaviors; making sucking noises with his teeth, passing gas, and stuffing the food in his mouth as though he was starving. Same with my sister, she would shovel the food in her mouth as though there was no tomorrow and would grab things from other peoples plates.] Comportment also refers to the style and content of a person's language. Certain types of language are acceptable in some situations or with friends and family, and not acceptable in others.

Insight, an important aspect of comportment, has to do with the ability to "see" oneself as others do. Insight is necessary in order to determine whether one is behaving in a socially acceptable or in a reasonable manner. Insight is also necessary for the patient to recognize his/ her deficits and illness. Changes in comportment may be manifested as "personality" alterations. A generally active, involved person could become apathetic and disinterested. The opposite may also occur. A usually quiet individual may become more outgoing, boisterous and disinhibited. Personality changes can also involve increased irritability, anger and even verbal or physical outbursts toward others (usually the caregiver). Comportment is assessed by observing the patient's behavior throughout the examination and interviewing other people (family and friends) who have information about the patient's "characteristic" behavior.

Individuals with frontotemporal dementia frequently have executive function and reasoning deficits. "Reasoning" refers to mental activities that promote decision-making. Being able to categorize information and to move from one perspective of a problem to another are examples of reasoning. "Executive functions" is a term that refers to yet another group of mental activities that organize and plan the flow of behavior. A good example of executive functions is what might happen if one were driving a car, talking with the passenger and suddenly having to respond to a child running into traffic. The ability to handle all the stimulation and to quickly plan a course of action is accomplished via executive functions. Individuals with frontal lobe dementia often lack flexibility in thinking and are unable to carry a project through to completion. [Our doctors told us when the other doctors put Michael on Aricept for memory problems, it helped his executive functions abilities. He was able to plan his suicide. Without the Aricept, he would never of been able to plan his death.] Failure of executive functions may increase safety risk since they may not be able to plan appropriate actions or inhibit inappropriate actions.

Wednesday, November 5, 2008

Frontotemporal dementia explained

A doctor from Northwestern University was interested in seeing my brother and sister's artwork. I keep an eye on their website, some good information there.

This information is found on the NW University Website http://www.brain.northwestern.edu/mdad/frontal.html

I made sidenotes in red about our family experience with this disease:

What is frontotemporal dementia?
There is a type of dementia called "frontotemporal" which typically affects patients at a very early age. [Have now traced my sister’s from her 20’s and my brother in his 30’s] In this type of dementia, there is no true memory loss in the early stages of the type that is seen in Alzheimer's dementia. Instead, there are changes in personality, ability to concentrate, social skills, motivation and reasoning. Because of their nature, these symptoms are often confused with psychiatric disorders. [My sister had bouts of depression, once treated with electric shock treatments. My brother exhibited signs of depression in his 30’s and 40’s.] There are gradual changes in one's customary ways of behaving and responding emotionally to others. Memory, language and visual perception are usually not impaired for the first two years, yet as the disease progresses and spreads to other areas of the brain, they too may become affected. Typically, the disorder affects females more than males.

The symptoms reflect the fact that the brain degeneration is not initially widespread and settles in the parts of the brain that are important for social skills, reasoning, judgment and the ability to take initiative.

When the brains of individuals with frontal lobe dementia are studied after death, the types of microscopic abnormalities that are seen are typically of two kinds. The first type is called Non-specific focal degeneration and the second is labeled Pick's disease. [My sister was confirmed as Non-specific, we assume my brother was the same] Non-specific focal degeneration accounts for 80% of cases of frontal lobe dementia. It is called "non specific" because there are no abnormal particles that are identifiable-only evidence that brain cells have been eliminated. Pick's disease, which accounts for 20% of cases of frontal lobe dementia, is identified under the microscope by abnormal particles called "Pick bodies", named after the neurologist who first observed them.


Have been busy pulling out notes, doctors etc that we kept during mike and patsy's illness. a flood of memories. it is amazing to see how there is so much information about ftd on the internet today.............back in 2001 there was nothing. we are getting the word out there. hopefully the healthcare providers are reading it.

Thursday, October 30, 2008

FTD Support Group is now ONLINE

http://ftdsupportforum.com/ When I first visited the AFTD site, it was weak...and really not much help other than a site to send money to. Now they link you over to this support site, which seems to be really well laid out.

Back to Business

Have been busy moving into a new house, putting in a garden and a new yard. Now it is time to get back to business.

The biggest thing we noticed through the whole process of draggin my brother and sister to doctors, was that doctors and nurses were clueless about FTD.

Once I started learning about FTD....it was so obvious what was going on with them. HINDSIGHT ... if only.....................

Friday, June 13, 2008

For more information of FTD

The Association for Frontotemporal Dementias and association for caregivers. You can also go to this site and donate for research etc.


AFTD1616 Walnut Street, Suite 1100Philadelphia, PA 19103

Changes in behavior and speech can be early signs of Frontotemporal Dementia. Some people mask it with drinking, so family members think they are drinking all the time, when in reality they may not be drinking at all or very little.

Wednesday, June 4, 2008

Fronto-temporal dementia

Are you familiar with Frontal Temporal Dementia?

For years I had a brother and sister that suffered from it, both have since passed away. It was devastating to our family since none of us knew for years what was wrong with them. They had been the healthiest members of the family and then we started noticing weird behaviors; they would walk in your bedroom at night unannounced, became sexually promiscuous, craved sweets, gained weight, paranoid, slowed speech, repetitive speech patterns, aggressive behaviors, and my brother started drawing flowers and mountains, my sister became a fabulous artist over the years.

We were not patient with them and these behaviors for years because we thought they were just being rude or depressed. Once we discovered what was going on, it at least helped our family understand that these people we knew all our lives did not just one day become rude uncaring individuals…they were sick.

Doctors tell us, now is like the 1980 era was for Alzheimer’s, we are just starting to hear about FTD and know that many people suffer from it, but are misdiagnosed. It wasn’t until we pushed to get a SPECT done on my sister that we could get it diagnosed. MRI’s had been done on both and with a qualified Neurologist that knows what to look for, we might have discovered it earlier…however it was overlooked. This is important information to share with families that may have similar stories.