Frontotemporal Disease Association

Still waiting for the documents from the State of Texas approving our non-profit status. Sarah called and they said documents are in process and we should receive them soon.

We are laying out the management and leadership roles. We are hoping all our friends and relatives will want to participate in some form or fashion.

We are looking for an organization or corporation to provide us with office space. Sarah is working on stationary and cards.

It is exciting to be on the ground floor of education effort of this magnitude. It is time to move forward on this initiative.

Susan, a Hero Among Us, Fights FTD

When I was first contacted by Susan, I couldn't believe I was talking with a woman living with FTD. Our first conversation was in December of 2008 and I was overwhelmed by her strength and humor.

After what we went through just getting a diagnosis for my brother and sister, I couldn't believe my ears. Could this woman really have the same disease which robbed my brother and sister of their smiles and passion for life?

Susan is funny, smart, and definitely a fighter. She shares her story with doctor after doctor. She was lucky to find a doctor willing to work closely with Susan and develop a large cocktail of drugs which help navigate Susan through her days. Before Susan, I really didn’t see any hope. This disease masquerades as many other diseases in the early years, it is tough to diagnose. I have spoken with so many family members dealing with loved ones suffering with FTD and devastation is always a word used when discussing the disease.

Because of Susan, I see there is hope, lots of hope. Susan is smart, she is a fighter, and she is taking this disease to the mat.

Susan and Cindy continue to work long hours as they approach the completion of the documentary “Planning For Hope”. Most of us will never know the challenges Susan faces daily, and she hopes we don’t…..but if we do, she is leading the way to a better journey.

http://www.ftdtheotherdementia.com/index.html is the website set up to raise additional money for the completion and distribution of the documentary. Every dollar can make a difference, so if you can, please donate.

Susan has been fighting another battle recently, bronchitis. Since her immune system is weaker, she is having a tough time. I am sending lots of prayers your way Susan.

In Honor or Dennis McGrury

My friend Jean has been thoughtfully loving and caring for her husband Dennis as he dealt with FTD. Dennis has left this world and I know this is sad for Jean, he was her soulmate.

When I read her plans for his celebration, I couldn't stop crying. I have never met Jean or Dennis, but feel a connection I can't explain.

I hate this disease, it is so unfair, so cruel, and so hard on families. I pray every night, this disease will disappear so that no more families have to feel the sadness.

Love you Jean.

Terri

The Other Dementia

This is a great article "The Other Dementia" UCSF is at the forefront studying frontotemporal dementia, a wasting disease similar to Alzheimer's that strikes patients at their peak by Katherine Nichols
Sunday, February 25, 2007

Dawn spoke with impeccable grammar until she reached her late 40s, when she began struggling to assemble a sentence. Her 8-year-old daughter would ask for a hug, but the once-doting mother pushed her away. A former vice president at a local bank, Dawn became unable to manage her own finances. Her spending became so irrepressible that her family had to seek court orders to prevent her from losing everything she had saved. Before she was diagnosed with frontotemporal dementia (FTD) at the University of California at San Francisco in 2002, Dawn divorced her husband. She was 52 years old. And the relentless decline continued.

"I do a lot of crying," says Dawn's mother, Emmogene, who lives in Antioch, cares for a husband with early Alzheimer's disease and regularly attends UCSF's FTD caregiver support group meetings. "It's been really hard because you think you're going to die before your children. You just have to go through it a day at a time, thinking about how they were and how they are now, and feeling so helpless."

Financial mismanagement and loss of judgment and empathy are typical symptoms of frontotemporal dementia, a degenerative brain disease that attacks slowly and yields devastating results, often stripping patients of language skills and inciting behavior so bizarre, damaging and unpredictable that approximately 60 percent of cases are misdiagnosed as psychiatric disorders. Perhaps even more devastating is the loss of personality -- the relentless destruction of everything that made someone who he or she once was -- which often obliterates relationships and careers before anyone even determines there is an illness.

"I think this disease is so much harder on the family than on the patient," says Jennifer Merrilees, a nurse who led UCSF's FTD caregiver support group and is now earning her doctoratein nursing and geriatrics. "The family deals with so much heartache, and so much of the unknown. It's a maze."

Frontotemporal dementia, also known as frontotemporal lobar degeneration (FTLD), has not become everyday terminology -- yet. But it's on the brink of public awareness in the same way Alzheimer's disease was 20 years ago. The scientists and physicians at UCSF are on the forefront of exploring an illness they believe to be more common than anyone has realized.

Experts regard FTD as the second most prevalent cause of dementia behind Alzheimer's, which ails an estimated 4.5 million people in the United States. But FTD's economic and emotional consequences are more detrimental, because it strikes otherwise healthy individuals in their 40s, 50s and early 60s, who are often at the peak of their careers and parenting responsibilities. There is no known cause, no treatment and no cure. Genetics may be responsible for 40 percent to 50 percent of cases. The rest appear to be random.

One barrier to public knowledge about FTD is that it can't be reduced to "10 early-warning signs." Though many similarities with Alzheimer's disease exist, the key difference is that FTD patients display only limited memory loss. Results of intelligence tests can remain normal, and individuals with unimpaired motor control can stay athletic for a long time, conveying the illusion of good health.
Even in the Bay Area in an era of AIDS and Alzheimer's, the social stigma associated with a little- understood dementia makes coping even more challenging for families.

This is something those participating in UCSF's monthly FTD caregiver support group meeting understand intimately. At a recent gathering in a small hospital conference room, the family of a newly diagnosed FTD patient intends, for the first time, to seek answers from people who have been dealing with the illness for as long as 10 years.

Frustration, tears, resignation and a remarkable desire to offer helpful advice fuel the unsteady emotional energy in the room, where 15 people crowd around a long table.

"I lost my husband, but I've been given another person I don't like," one woman says. Everyone nods in agreement.

Another adds, "You have a big baby who can't learn anything."

Phrases such as "the decision-making powers have gone to hell in a handbag," "no impulse control," "I don't know who this person is," "whatever seems like the hugest problem now won't be in a few months," "perpetual state of grieving" and "it's very, very hard to watch," are just some of the statements uttered.
The new family members explain their struggle with the patient's actual competence level and his perceived abilities. Driving, working and interpersonal relationships have become battlegrounds. "We're still trying to reason with him," says one, before adding softly, "but there's no reasoning with him."
In a sympathetic tone, the entire group confirms, "No." The patient's wife, attending the support group meeting without his knowledge, quietly intercepts her tears before they fall.

From the other end of the table, a word of encouragement emerges: Ask for help, because "it's amazing the kind of support you're going to get from the least likely places."

But asking for help is not easy when a definitive diagnosis remains elusive. In fact, the only way to know for sure if a patient has FTD is by examining his brain after he's died. This is not the case with Alzheimer's, which clinicians can pinpoint with more confidence.

"The whole idea of the first symptom is a moving target," says Merrilees. It's almost always something that's understood long after it occurs -- even years later -- when spouses begin to comprehend the disease and re-examine strange behaviors they once tried to ignore or attribute to stress.

Consequently, detecting FTD remains more of an art than science. Magnetic resonance imaging and CT scans can help rule out a brain tumor and reveal cerebral atrophy, but these and PET scans "are not a means for making a diagnosis," says Tiffany Chow, a neuroscientist at the University of Toronto and a speaker at UCSF's FTD conference in September. Neuropsychological tests can help, but Chow says that nothing is more effective than a complete examination and history of speech impairments and/or behavioral changes.

Information from patients is notoriously unreliable. They may admit to minor limitations, but as the disease progresses, a lack of insight prohibits them from recognizing, or caring about, their deficiencies.

Compounding the problem is the fact that primary-care physicians and neurologists in private practice may have limited knowledge of the disease and difficulty obtaining information. The patient may block communication between the physician and other family members. Or families might be reluctant to tell the truth, out of embarrassment or fear of repercussions from a now-volatile loved one.

"I can't tell you how many times before someone ever visits us, things are ruined," says Dr. Bruce Miller, director of UCSF's Memory and Aging Center. "Patients may be able to say the difference between right and wrong, but they don't know the difference between right and wrong."

Unmonitored patients often get arrested for erratic driving or theft, or wreak havoc in the home and workplace with inappropriate behavior, sexual or physical aggression, or gross financial mismanagement. Others may just sit home and play solitaire all day, a type of apathy that can be "extremely stressful for families," according to Merrilees. No matter what the circumstances, "there's a relentlessness to what (the caregiver) is going through, and that's really hard to shoulder."

Jan, who lives in Berkeley with her husband, an FTD patient, puts it more bluntly. "You don't get any affection," she says. "You lose your sense of touch. They're not really there. It's like there's been a terrible automobile accident, and suddenly I have to take care of a very bizarre child with brain damage."
Like others interviewed for this story, Jan asked that only her first name be used. Some feared angering or embarrassing their loved ones; others expressed concern that people might try to take advantage of the gullible FTD patient.
Which parts of the brain make us ourselves? "Those are the parts even the most skilled neurologists still don't understand very well," says Howie Rosen, a neurologist at UCSF.

Consequently, knowledge about the cause of the illness is limited and constantly evolving. Essentially, misfolding proteins aggregate and become like sludge or tangled train tracks that cause horrific wrecks in the brain.

Abnormal deposits of the tau protein (also present in Alzheimer's and Parkinson's diseases) can be one source. Another cause is a deficit of the progranulin protein -- essential for neuron survival. This leads to pathological deposits of ubiquitin, a protein recently identified as TDP-43, which is also present in ALS, or Lou Gehrig's disease.

New discoveries prove that this illness is not as isolated as scientists once thought it was. "If you look at a tiny piece of it, like the tail of an elephant, you see a rare disease," says Miller. "But if you combine all the diseases together as they're linked, you really get an elephant -- a disease that's very common."
Though some literature indicates an equal number of men and women have FTD, the ratio of male to female FTD patients at UCSF is two to one. Initial symptoms may include language difficulties, behavioral anomalies or both. Typically, clinicians try to control behavior -- often with antipsychotic medication that works sporadically. Patients die from complications of the illness within three to 15 years.

Caregivers often express frustration that doctors can't visit their homes for extended periods to see what happens behind closed doors.

"I wish these people had more time to observe," says Don (his name has been changed for privacy reasons), who brought his 49-year-old wife in for evaluation at UCSF. "I'm not really sure they're getting a full picture."

Miller says they will make house calls to noncompliant patients. But too few experts and a constant scramble for resources make this kind of care impossible for everyone.

UCSF'S Memory and Aging Center is located on the Parnassus campus, with views of Golden Gate Park. Its $8 million annual operating budget comes from grants, including two from the National Institutes of Health. Local philanthropy -- such as the Hillblom, McBean and Koret foundations -- provides one-fourth of that. Miller would like to see those numbers rise.

"Private funding comes with fewer strings attached, and it allows us to do really creative things," he says.

UCSF is also working on a promising video about FTD that the school hopes to air on PBS in the next two years. But its completion awaits donations.
When Miller became the leader of UCSF's Memory and Aging Center in 1998, there were three employees. Now, 70 people share space meant for half as many. When someone enters the lobby area, those waiting in chairs must turn their legs to the side to let the person pass.

What makes Miller adept at managing an illness with so few boundaries is his ability to veer from conventional wisdom. "I have my own way of thinking about things," he says. "I'm eager to improve what we do every week, and I'm comfortable with people -- and unconventional. I don't necessarily follow the well-beaten path. Because if you think that by doing routine tests you're going to understand this disease, you're wrong. You have to explore somebody's life and think about what's unusual about it, even if it's exemplary."

A leader who educates physicians and scientists around the world, Miller evaluates 75 patients a year, up from 15 or 20 when he first began studying FTD in 1984.

On a typical day, he gathers a few members of his team in his cramped office, decorated with family photos and a plastic model of the brain, to discuss a patient named Olivia (not her real name). Dressed in a pinstriped suit, the 57-year-old physician-scientist invites input from clinical nurse Robin Ketelle; physician Huidy Shu, Katie Carey, a neuropsychology fellow; and Lovingly Quitania, a graduate student in neuropsychology.

FTD is commonly misdiagnosed as Alzheimer's, bipolar disorder or schizophrenia, and this patient is no different. Though MRIs can often appear normal, Miller examines images of her brain on his computer. He comments on the atrophy in the frontal lobe, and explains how he will superimpose the new image over a year-old picture and statistically calculate any change.

Before this meeting, Olivia's husband, Don, explains privately that she had been a "superwoman" who managed her work and motherhood responsibilities with ease. "She was really at the top of her game," he recalls wistfully.

But when she was 44, her behavior began to change. She exhibited unusual fits of anger and agitation, which sent the couple to a marriage counselor. "What I didn't realize at the time was that she was also having anger management issues at work," he says. "But it was easy to attribute that to stress."

Things got worse. She obsessed about certain topics, and conversations became laborious as she repeated herself incessantly. She drove the wrong way down a one-way street. Multitasking became impossible. Affection for everyone in the family diminished. A trip to the store yielded 24 cans of shaving cream and towels the family didn't need. Unable to monitor her eating, her weight fluctuated dramatically.

The marriage counselor thought she was depressed, and "the psychiatrist was a disaster," says Don. He was never sure if her peculiar behavior -- like weeding the garden at 3 a.m., naked -- was due to the illness or the medications prescribed for her. Two years before her diagnosis, she was fired from her job for poor performance, though she denied any wrongdoing. She found another job, and promptly was terminated from that as well. Reports indicated that she didn't understand instructions, or couldn't execute them. In 2005, the couple finally got some answers at UCSF.

"The hardest part is losing my wife a little bit at a time," Don says. "It makes me live in a perpetual state of unresolved grief." Despite the support from his community and church, "it still hurts, and it's still a struggle to go through. I feel like she's mostly gone. Her personality is completely different. There are times when I catch myself sort of acting like she's still the same person, and that usually gets me knocked down really hard. It doesn't work. But when there's this glimmer of a response that reminds of the way she used to be, I'll try to respond to that, and it meets a brick wall."

Following the one-hour summary of Don's observations, the team walks from Miller's office to the hospital, where Olivia and Don are waiting.
In front of his wife, however, Don is guarded. He knows that saying anything she doesn't like will result in a disturbing encounter later on, sans witnesses.
With an audience of six, Miller shifts between neurological exams and light conversation with Olivia in an unassuming, accessible, respectful manner that seems to put her at ease. Because many of his patients have trouble talking, Miller has perfected the art of multifaceted communication.
"I feel I'm in the presence of a master when he is working with patients," notes Ketelle. "He listens and responds on a nonverbal level that I find unorthodox and very effective."

Clinically, Miller is analytical in an intuitive way that comes from 23 years of studying an illness most doctors do not yet understand.

With arms crossed, Olivia admits that her personality might have changed "a little bit." She knows she repeats herself, and that she's not "wonder woman anymore." But that's all she seems to grasp. Miller adjusts easily to the irregular terrain.

FTD patients lack judgment in a way that makes them unable to recognize their own deficiencies or appreciate threats to their safety -- or the safety of others. Their ability to appear lucid and competent much of the time makes them a challenge to manage.

"With FTD, we see families in major crisis," says Geri Hall, a featured speaker at UCSF's International FTD Conference in September, and an advance-practice nurse in Iowa who has seen the damage after working with hundreds of FTD patients. "The problem is that the patient has not been determined to be incompetent, and nobody wants to take away the autonomy of someone who is not impaired. So the caregiver is constantly being barraged by negative restrictive feedback that he is trying to limit this competent person. It's like swimming in one of those endless pools."

Miller and his team are trying to change that by focusing on collaborative work that advances everyone's understanding of the disease -- and by treating real people on a daily basis. He also devotes much of his 100-hour weeks to fostering the next generation of clinical researchers.

His much-publicized exploration of the artistic talents elicited in many FTD patients is a testament to his ability "to recognize something beautiful that has come out of something horrible," says clinical behavioral neurology fellow Brandy Matthews. "It's just a different way of thinking about a disease process that's very unique to him. It takes some asking to figure out what (patients) still do well, and he always focuses on that."

While Miller and his team hunt for treatment and a cure, family members struggle with overwhelming barriers and limited options. Nursing homes become problematic when young and physically able patients are too strong for staff members prepared only for the frail elderly.

Jan recalls her efforts to find day care for her 6-foot-4-inch husband while she went to work in the city. When she finally placed him, he demanded to go home on the first day. The staff politely and quickly escorted him to the door.
When she isn't busy explaining FTD to her therapist, she's working to make ends meet. Of the $5,000 a month Jan brings home, $4,500 now goes to caregivers, whom she pretends are artists looking for space, or people who want help running errands so he will allow them to stay. But she believes it's essential to give her the respite she needs to survive.

"We rent videos because we can't afford to go to the movies," she says. "Plus, I have to do hours of work just to come into the office. But having a human being who does not have dementia to talk to is really important." The most difficult part is dealing with the "ocean waves of emotional grief. For years, I've had a bad cry every week -- sometimes more. It's like you're slogging through mud, the mud being all the emotions that drag you down. You gradually shut down and become not really alive."

Emmogene, who talks about her daughter, Dawn, in UCSF's caregiver support group meetings, understands this anguish. These days, Dawn does not speak at all. She's incontinent, but fights every attempt to clean and bathe her. Her once-energetic walk has become a shuffle, but she paces constantly, and when she tries to sit down, she sometimes falls and hurts herself. Even with constant monitoring from family and a professional caregiver, she's managed to shoplift a few items, which her family must return with a written note from doctors, along with profuse apologies. Antidepressants and antipsychotic drugs that seemed to help temporarily have fallen by the wayside as the benefits became undetectable, and side effects, like diarrhea, became impossible to manage. Emmogene pays lawyers and accountants tens of thousands of dollars to maintain control over Dawn's finances. Echoing the sentiments of every loved one and physician dealing with FTD, Emmogene's voice breaks as she whispers, "I just wish I could do something for her."

Help for caregivers
Frontotemporal dementia (also called frontotemporal lobar degeneration) is an umbrella term that covers several disease subtypes. They are named according to the way the disease began. Doctors agree that, as each one progresses, the severity of symptoms may vary, but they all begin to resemble one another.
Primary progressive aphasia or progressive non-fluent aphasia: Begins with language disorder and may remain isolated there for up to two years. All patients suffer behavioral symptoms and cognitive decline as the disease spreads.
Semantic dementia: Language problems initially, primarily with comprehension.
Pick's disease: Immortalized in a tragic plot turn in Sue Monk Kidd's "The Mermaid's Chair" and first described by Arnold Pick in 1892. Behavioral symptoms exhibited first.
Corticobasal degeneration: Begins with motor control and coordination problems.
Progressive supranuclear palsy: A related disorder that begins with problems with gait and balance.
On the Web
University of California San Francisco Memory and Aging Center: www.memory.ucsf.edu (includes information about support group meetings)
Association for Frontotemporal Dementias: www.ftd-picks.org; (866) 507-7222.

July 4th at Lake LBJ

I can't believe it has been a year since I started blogging about FTD. Here it is 4th of July, one of the best holidays for this family and friends. Every year we would all gather at the lake and have lots of food, drink, sports and friendship....what a wonderful time we had. I miss those times. Michael was always cooking, playing volleyball and ring toss. Patsy was always tanning and playing volleyball. Lots of great memories were made at this place. The picture on this site of my sister, brother and I on the dock was taken on a 4th of July.

Planning For Hope the Documentary About FTD

Mom and I finally traveled to Colorado to meet Susan (AKA Lab Rat) and Cindy. I cannot express the joy it gave my heart to see Susan fighting this disease with everything she has.

Please pass the word about the documentary as they still need funds to finish the project and distribute it to healthcare professionals.

The website is still being tweaked, but if you know anyone interested in donating to make this happen, you can direct them to this page:

http://imsftp.imsproductions.com/Clients/FTD/index.html

Patsy's Watercolor Stage

When Patsy was deep into her watercolor stage, her pictures were so colorful, happy, and beautiful. This was my favorite stage of her works. This picture she called Showgirl, definitely my personal favorite.

Patsy went through many stages of art; charcoal, watercolor, oil, acrylics, clay, and 3-d wall hangings.

As the disease progressed, her work became sad and dark.

It makes me crazy how everyday I still hear stories about doctors, healthcare providers, and the general public that still know nothing about FTD. When our healthcare providers don't know enough to diagnose our Loved Ones, our Loved Ones loose precious time. Could this additional time allow them more time to deal with the onset years. Could we better prepare financially?When our family and friends don't understand, they just think we are being cruel. If they understood more about the disease would we not be made to feel so guilty?

I purchased FTD Education.com and .org I am moving back to Texas to be closer to Baylor College of Medicine. There is so much work to do regarding EDUCATION. I need to move my blog over to .com I am learning alot about wordpress, but have a long way to go.

My Journey of Discovery

I had never heard of Frontotemporal Dementia or Pick's Disease. I had gone to graduate school to be a clinical psychologist and had studied the brain, but never ran across any information about these types of dementia.

We were an exceptionally blessed family even though we had experienced the loss of our father in 1964. We pulled together as a family and had many wonderful years growing up, taking on careers, making families, and just enjoying life. However, looking back I recognize behaviors in my sister in her late 20's and my brother in his late 30's that just were not consistent with their usual patterns of behavior. Could it have been early onset of FTD?

I love to research anything I have an interest in. Of course as my brother and sister were exhibiting more dramatic behavior changes, I was compelled to research what was causing it. I started with a chart organized by age and started listing odd behaviors and realized they had similar behaviors (maybe looked different, but ultimately the same).

I pulled out a book from school, the Mental Health Resource Guide and went chapter by chapter trying to find answers. I just knew it had to be a mental illness causing these behaviors. Could it be bipolar, depression, alcohol dementia? None seemed fit patterns of behaviors.

Next I called a friend in Seattle and we talked for hours about all these mental disorders and again we leaned towards depression and alcohol dementia. My brother and sister could drink, but I would never say they we drunks. They could drink one day and not drink for a year. As their speech was affected you could talk with them and think they had been drinking due to the slurred speech when they didn’t have a drink in some time.

Then my brother took his life. A young man in him prime (or should have been) at the age of 51 (1 month from 52) sat alone in his home with a gun and shot himself through the heart. A gentle soul that in his right mind would never have had the capability or desire to complete such an act. We now know he was very sick at the time and on a new medication which allowed him some clarity, enough he knew he was sick and couldn’t be a burden to anyone.

Illness in our family was rare. We live long and healthy lives. For my brother to become so out of control by his standards was unacceptable to him. I know some of this is summation on my part, but I feel pretty confident in my opinions. We were very close all our lives and there were not many secrets between us.

I knew I had to figure out what was going on with Patsy quickly before she experienced the same tragedy. It is difficult to write about my brother and sister, but if I do not write about it, how will we ever learn more about it. I do not believe you should put your head in the sand. I am a educator at heart, so information is key for me.

This started my journey to find answers about this disorder.

Progress and Promise Against Alzheimers Disease

Check out this video produced by University of Pennsylvania, John Q. Trojanowski, MD, PhD, and Virginia M-Y. Lee, PhD, MBA, lead efforts to understand Alzheimer's disease, other dementias, Parkinsons, ALS (Lou Gehrig's Disease), and related neurological disorders at the Center for Neurodegenerative Disease Research (CNDR).

http://www.youtube.com/watch?v=bxlHjF1l4EU

Moving the Blog

My nephew Chris helped me move this blog over to http://www.FTDEDUCATION.COM Trying to make it more professional looking. Have alot planned once we get moved and have time.

I purchased FTDEDUCATION.COM and .ORG

Until then, I need to figure out how to move Followers over....to the new site. YIKES, still working on that one.

Stay with me......

Thinking about Patsy

This is post I put on FTD Support Forum:

Was thinking about my sister today and how she took up painting, sculpting and drawing when she was older. Her work was so beautiful in the early years and then as the disease was taking over, it became dark and then she couldn't draw or paint the last 5 years of her life.

Her first painting was a small painting of a flower the day her son was born. Then she didn't do anything for years. When she went back to college later in life, she got her degree and then took a art course for fun. She created some beautiful watercolors, they were my favorite.

She saw art in life and then went home and transferred it to canvas or clay. Just before she lost the use of her hands, she tried to draw for me. I wanted a picture to compliment one she had done earlier. She was not able to draw well so she just set it aside and never went back to it.

She had stages of art; watercolor, oil, charcoal, cartoons, cow pies, hearts, bears, trees, 3D art, etc etc....I almost forgot her photography. She did it too. She won a contest with one photo she took of her daughter.

I miss those stages now that they are no longer coming......
Tags:

Busy Couple of Weeks

I have been so busy lately, I haven’t been blogging. I quit work for a year and a half to spend time with my mother. After loosing 2 children to FTD, she was pretty down, so when she asked me to quit work and hang with her, I did. It was weird at first, not getting up and taking off to the office. The oddest thing was not having my TREO attached to my ear. It has been a good time, but it is time for me to get back to it.

After all this time off (I haven’t not worked since I was about 14 years old), I am challenged just getting myself organized. I like everything in its place and a place for everything. I now realize that is a skill and I haven’t been practicing it for some time.

I am back to work selling real estate. The market is healthy here in the mountains, people still buying and selling….so that is good.

Mom and I travel to Colorado the end of the month to participate in the filming of "Planning For Hope". I hope our participation is helpful. More people need to speak out about FTD.

I remember in the 70's, you never said “Cancer” out loud, you would just say "the C word" if you said anything at all. Now we wear pink ribbons and run in marathons to honor family and friends with Cancer.

Then in the 80's you never admitted you had a family member with Alzheimer's. My how times change. And now Alzheimer’s Association is one of the most powerful organizations in the world.

I hope people realize it is important to talk about Frontotemporal Dementia. It helped me to learn more about it. I now understand my brother and sister were not weird crazy individuals as they got older, they were ill. We had no history of this disease; it just seemed to pop up. There is so much to learn.

I am so glad to know Susan Grant, she is living with FTD….she gives me hope for future generations.

Planning for Hope = The Documentary

HELP GIVE HOPE A FIGHTING CHANCE
Your generous support and donations are needed to help make this important film a reality and bring to light the often misdiagnosed – and misunderstood – disease of frontotemporal dementia (FTD.)

■ THE FILM
Planning for Hope will be a 1-hour documentary featuring the stories of patients in different stages of battling FTD, with a focus on educating both healthcare professionals and the general public about recognizing and treating FTD. Major sponsorship is provided by the Academy of Molecular Imaging, a central supporter of medical imaging technologies such as PET brain scans, one of the most crucial tools for detection of FTD.

■ MORE ABOUT FTD
Frontotemporal dementia (frontotemporal lobar degeneration) is an umbrella term for a diverse group of disorders that primarily affect the frontal and temporal lobes of the brain — the areas generally associated with personality, behavior and language.

In FTD, portions of these lobes atrophy, or shrink. Signs and symptoms vary, depending upon the portion of the brain affected. Some people with FTD undergo dramatic changes in their personality and become socially inappropriate, impulsive or emotionally blunted, while others lose the ability to use and understand language. Patients taking medications for anxiety or depression may not show the behavioral symptoms associated with FTD, making it even harder to diagnose. Sometimes the earliest signs can be as simple as a change in personality or thought processes … or the simple feeling that something isn’t quite right.

FTD is often misdiagnosed as a psychiatric problem or as Alzheimer's disease, but tends to occur at a younger age than Alzheimer's.

■ HOW YOU CAN HELP
Donations are needed to help complete the final stages of film production and cover distribution and promotion expenses. Your tax-deductible gift will help make a difference for future generations, and all contributions will be gratefully acknowledged in the film credits.

■ TO DONATE
Please make donations payable to SonShine Mountain Retreat, Inc. (along with a note that the donation is for the Planning for Hope project) and mail to:
SonShine Mountain Retreat, Inc.
2425 Highway 9, Black Mountain, NC 28711

Protect Your Brain by Dr. Andrew Weil

2 Ways to Protect the Brain

Roughly 5.1 million Americans have Alzheimer's disease; that number is expected to grow to 7.7 million by 2030. But two studies have identified therapies that may help keep the devastating - and often fatal - deterioration of the brain that characterizes Alzheimer's at bay.Related Weil ProductsDr. Weil on Healthy Aging for a Healthy Mind - Want to help protect your memory?

You can reduce your risk of developing diseases influenced by inflammation, including Alzheimer's, simply by following an anti-inflammatory diet like the one featured on the Dr. Weil on Healthy Aging online guide.

First, scientists at the University of California at Irvine have reported that omega-3 fatty acids may slow the growth of two distinct brain lesions that are hallmarks of Alzheimer's disease. A study using genetically modified mice is the first to demonstrate that DHA, an omega-3 fatty acid, can delay the development of protein "tangles" in brain cells. DHA also reduces levels of beta amyloid, another protein which can cluster in the brain and form plaques. Mice in a control group ate food that mimics a typical American diet, with a 10 to one ratio of omega-6 fatty acids to omega-3 fatty acids. Studies indicate that a proper ratio is important to maintain health, with the ideal being 3:1 to 5:1.Mice in three test groups were given food with a 1:1 ratio of omega-6 fatty acids to omega-3 fatty acids. One of these groups received supplemental DHA only. Two groups received DHA, plus additional omega-6 fatty acids. After three months, mice in all of the test groups had lower levels of both proteins than mice in the control group, but at nine months, only mice on the DHA diet had lower levels. These results suggest that DHA works better on its own than when paired with omega-6 fatty acids. The research appeared in the April 18, 2007, issue of The Journal of Neuroscience.

"Perhaps no piece of nutritional advice in the year 2007 is more relevant than this one: to reduce your risk of a wide variety of diseases including heart disease, cancer, diabetes and Alzheimer's, consume more omega-3 fatty acids and fewer omega-six fatty acids," said Dr. Weil. "A good way to do this: add wild-caught fatty fish such as Alaskan salmon to your diet, and reduce consumption of fried food, which tends to be saturated with omega-6-rich soybean oil." Rebalancing the ratios of these fats is an important component of Dr. Weil's anti-inflammatory diet.

Second, you've probably heard before that mentally stimulating activities can reduce the risk of Alzheimer's disease. Now, a new study suggests just how much protection we might expect. Researchers in Chicago found that people who are cognitively active in old age are 2.6 times less likely to develop dementia or Alzheimer's than those who use their heads less. Stimulating activities include such routine habits as reading the newspaper, checking out and reading a library book, as well as playing chess, going to the theater and other mentally engaging pursuits. Investigators from Rush University Medical Center tested more than 700 study participants, average age 80, every year for up to five years. A total of 90 developed Alzheimer's during the study, and risks of getting the disease correlated with levels of mental "workouts". The benefits of mental stimulation held true even after the investigators controlled for past cognitive activity, socioeconomic status throughout life and current social and physical activity.

The study was published on June 27, 2007 in the online edition of Neurology, the medical journal of the American Academy of Neurology."The research is clear on this issue: challenging your mind on a regular basis helps to lower the risk of developing Alzheimer's disease," said Dr. Weil.

Planning For Hope - The Film about FTD

Film company IMS Productions from Colorado Springs is currently working on a documentary “Planning For Hope”. The producers Susan Grant and Cindy Dilks are on a mission of hope in their own right.

At 53 years old, Susan was diagnosed with FTD in 2003, forcing her to quit her financial planning practice. Today, Susan is working harder than ever to make sure the world has a better understanding of this dreaded disease.

Donations are needed to complete the film and handle the distribution. Donations can be made through: SonShine Mountain Retreat, Inc. 2425 Highway 9, Black Mountain, NC 28711. (W) 828-669-8745. Please note donation is for “Planning For Hope”.

Partners for the film include organizations like; Alzheimer’s Association, AFTD, Alliance for Aging Research, Mayo Clinic, University of Pennsylvania, University of Colorado, Raredisease.org, and PositScience.com.

Early diagnosis and a cure some day is their goal with this film. Their dream is to help others.

Please, even if only $1.00. There is never too small of an amount. DONATE and make a difference.

My Brother's Behavior Changes

I was reading http://irenetdjftd.blogspot.com/ and it reminded me of some behavior changes with Michael and Patsy as the disease progressed.

Mom was staying with Michael at the lake and he had become so paranoid about closing the blinds, locking the doors, and not using electric appliances. To know Michael, this was so opposite of his usual way of life, especially at the lake. When healthy, Michael was the cook at the lake. He wanted to cook for everyone and wanted all our guests to be well fed. He loved to hangout under the trees, napping and relaxing while the brisket slow cooked.

The year before his death, he would not cook at all. All he was operating was the coffee maker. He would buy frozen foods like burritos (not warming them, just eating them defrosted) and ice cream. He would walk outside to check on something and would lock the door behind him. He would walk around the house checking the blinds to make sure they were closed tight. If mother opened a blind so there was some sunlight in the kitchen while she cooked, he could grunt and come in behind her in a few minutes and close it.

I remember thinking to myself, was he paranoid because he had been a detective for so long and now he was becoming overly obsessive thinking someone was coming after him. We were reaching for answers, anything that might explain why he was acting so differently.

Michael didn’t like traveling into San Antonio to visit the kids, travel was harder for him. He said he wasn’t as familiar with places as he used to be. He would prefer to be home sitting in front of the TV watching The Price is Right.

Even his TV show preferences changed. He used to love watching golf and the Dallas Cowboys play, but became less interested in those.

Mom would read the paper in the morning and he would get agitated because it disrupted his regular routine. Every morning, he would scan the paper (used to read it, but only scanned photos towards the end) and then deliver it to a neighbor. Mom reading the paper, was upsetting to him. He would sit and stare at her until she finished and once she finished, he would huff at her, grab the paper and run it to the neighbor’s house.

Once when the water line broke while mom was visiting, Michael got so upset he blamed her. She called the plumber and had him come out. When the plumber arrived, Michael got in his truck and took off….long enough for it to be repaired and mom pay for it. Allowing mom to pay for anything like this was so out of character for him.

Frontotemporal Dementia FTD

Taken from "The Tangled Neuron"

The term frontotemporal dementia (FTD) refers to a group of degenerative brain conditions that affect the frontal and temporal lobes of the brain.

Scientists have observed abnormalities in a protein called tau in the brains of some people with FTD. The protein forms into tangles (also found in Alzheimer’s) that scientists think harm neurons. In Pick’s disease, one type of FTD, abnormal cells called Pick’s bodies are also found in the brain.

FTD can cause memory loss, speech problems and changes in personality and social behavior. Symptoms may also include problems with balance or walking. Some diagnosed with FTD experience enhanced creativity.

Researchers do not know what causes FTD, and there are no treatments to stop or slow the disease progression. Drugs typically prescribed for other types of memory loss, such as cholinesterase inhibitors and certain antipsychotic drugs, may not be appropriate for people with FTD.

Donate to Further Research in FTD

You can donate directly to Baylor College of Medicine - Department of Neurology

To donate, make checks payable to:

Mr. Keith Davis
Administrator
Department of Neurology
N-302One Baylor Plaza
Houston, Tx 77030
713.798.8910

You can call him with any questions. Be sure to put cover letter stating that you want the donation to go to Dept of Neurology for FTD Research.

We have a long way to go.....so please tell your friends and family, instead of flowers when your loved one is ill, donate money for research.

Doctors that Care

The doctors at Baylor College of Medicine in Houston Texas are INCREDIBLE.

We experienced years of doctors telling us we were wrong and nothing serious was going on with my sister and brother. Sometimes doctors got angry because we were telling them our suspicions about what was going on with Michael and Patsy. Battle after battle, you start questioning yourself.

After finding BCM, we were able to stabilize my sister's medications. The fight wasn't over though. We didn't live in Houston, so the doctors where we lived would change Patsy's medications because they thought they knew more than the doctors at BCM Neurology Department. And the local doctors knew NOTHING of FTD until we told them about it.

If you have a loved one and you aren't getting the help you need and you can get to Houston. Go to see Dr. Paul Schulz and his team. This is a teaching hospital, so they want answers. This is a caring group of Neuro Professionals.

I worry when I hear stories where someone is talking about their daughter, husband, son etc and say..."well he is just going through a rough patch" or "maybe he/she is depressed" or "maybe he/she had a stroke" or "I don't understand his/her behaviors" or "could he/she be Bipolar" ... run don't walk to a Neurologist and have them tested. Get a PET scan if you can. I have learned it is even better than the SPECT or MRI.

Seems like when the brain malfunctions, we are afraid. We shy away of diagnosis. Why is that?

Meetings at Baylor College of Medicine

We toured Baylor College of Medicine's Research Laboratory where they are actively seeking answers for FTD. Incredible people doing incredible work.

Also heard brief presentations from the Researchers, outlining what they are working on. These people are not just Researchers, they are compassionate people wanting desperately to find answers. Realizing they are on the forefront of this disease, they understand there remains much to do.

I want to thank Dr. Paul Schulz, Neurologist, Dr. Michelle York, Neuropsychologist, Dr. Qureshi, Neuropsychiatry, Dr. Lai, Director of Parkinson’s Center, and Linda Richardson, Founder of ALS Houston Chapter and Clinic. There are many more to thank….the researchers, but I don’t know them all by name.

Dr. Schulz was my sister's doctor. Dr. Schulz and his team helped our family understand what was happening as the FTD progressed. Had it not been for BCM and these caring doctors, my sister could have passed away before we knew what was going on. They helped us to understand why she behaved like she did.

When the brain is involved, we tend to shy away from what is going on...you can't see it, surely drugs can help?? ...this family knows all the scenarios.

We need to help them raise money to start FTD Clinics...a great concept to help patients and families dealing with this dreaded disease.

FTD description

FTD is a form of dementia, or altered mental status, which is distinct from the cognitive and memory problems evident in Alzheimer’s disease.

FTD involves a change in personality that can produce obsessive behavior, loss of the ability to plan or make decisions, and other more subtle signs that something is amiss in the cerebral cortex.

Frontotemporal refers to the forward part of the brain that sits above the eyes and behind the temples. It is the last region of the cerebral cortex to mature, which explains why teens often cannot make good “adult” decisions. Lowering of the function of this region can lead to impulsive and emotional behavior.

2009 Goals

Educate healthcare providers about Frontotemporal Dementia

Inspire organizations, corporations, and individuals to donate money and resources for research and education of Frontotemporal Dementia

Listen and provide a ear to those caregivers in need of a friend that understands what they are going through