Our Mission

* Educate healthcare professionals

* Establish a clinic for FTD sufferers

* Support research

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.