Post by workingmom on Dec 24, 2007 10:07:54 GMT -5
Michelle Draper
Published 10/18/2007 - 4:13 p.m.
L to R: In a family portrait taken a year ago Alexandra, now 13, Harrison now 8, Michelle and Bill, and Wes, now 16.
Diagnosed with the same rare and progressive brain disease that is causing Senator Pete Domenici, R, New Mexico to not seek another term in office, Michelle Brown, a Flower Mound wife and mother, now resides in the local Autumn Leaves care facility. Her husband Bill and children struggle with the diagnosis and all its implications, and Bill has started the first support group in the state for other families coping with the same diagnosis.
The disease, commonly referred to as FTD, is Frontotemporal Dementia. It causes a gradual decline in behavior and language, which differs greatly from the more widely known Alzheimer’s disease, which robs its victims of memory. Brown says this disease affects about 250,000 Americans, and his 46 year old wife Michelle was diagnosed with the illness about 16 months ago. There is no treatment of cure. In retrospect, though, the Bridlewood resident says symptoms started back in 2003 when Michelle started becoming very reclusive.
It was a long road to getting any answers, and first Michelle was diagnosed with severe depression in 2005, two years after family and friends started noticing bizarre behavior that included “exercising” by pacing and walking in circles in the house even though the family has a gym membership. Michelle also began to have minor car accidents, spend almost 100% of her time alone and make financial mistakes that were very out of character. Other changes included when Michelle quit answering her cell phone, stopped routine personal hygiene and began to horde items. “At one time, we had 50 cans of shaving crème,” says Brown, “that she had stocked up on.” During her decline, she still managed to volunteer at the Flower Mound Library.
After finally getting the diagnosis of FTD in June of 2006, Brown says he felt like the “whole family had been in a drive by shooting.” About 14 months later, the family made the painful decision for Michelle to move into Autumn Leaves in Flower Mound, a 24 hour facility that specializes in dementia and Alzheimer’s. In a study done by the University of California, San Francisco, the average person, from the time of diagnosis, lived only about three and a half years. Brown says Michelle has adjusted to the move very well. “We wanted her to get the best care possible and preserve some positive memories for the kids.” She is the youngest resident there, with the next youngest person being 22 years her senior.
Now, Brown is left trying to function as both mother and father to their three children, 16 year old Wes, 13 year old Alexandra and 8 year old Harrison. The community, says Brown, has been very helpful through her illness, by emotional support, bringing meals and helping him get his children all the places they need to go.
Now, Brown would like to give something back to others by starting a support group for families in the Dallas Metroplex dealing with the same illness. The group, which is going to meet every 8 weeks, already has a membership of 12 families who live in places including Plano, Shady Shores, Arlington and Fort Worth.
“I want to really help families deal with the impact of this illness,” states Brown, adding that while families of those with Alzheimers are able to find plenty of resources and information, there are limited resources for the families of those with FTD. He says families need a lot of support because this is like no other disease. “I don’t think she really realizes anything is wrong with her,” says Brown of his wife of 17 years.
Brown believes that several surgeries his wife underwent could have contributed to the onset of FTD, as he says a neurologist told him if you have a gene for dementia, which his wife does, that the more often you are exposed to anesthesia, there is a chance for the disease to accelerate. “We can trace back to those surgery dates a change in behavior,” says Brown.
November is FTD Awareness Month, and the Association for Frontotemporal Dementias non profit group asks that everyone tell 10 people about the disease in November to raise funds and awareness. Many events will be held that month to help raise money for a new FTD Drug Discovery Program to find a medical intervention for FTD families. The goal is to raise $100,000 by the end of the year. Bill’s support group will be organizing a cookbook to help raise funds for the cause. Bill and Michelle’s 13 year old daughter Alex is getting involved with the help of her fellow National Junior Honor Society members at Downing Middle School. Of his children, whom are mostly straight A students, Brown says he is “only trying to continue on what my wife started. I don’t want to fail her.”
If you would like more information about FTD, the support group, or the cookbook, you may contact Bill Brown at william24b@yahoo.com.
Published 10/18/2007 - 4:13 p.m.
L to R: In a family portrait taken a year ago Alexandra, now 13, Harrison now 8, Michelle and Bill, and Wes, now 16.
Diagnosed with the same rare and progressive brain disease that is causing Senator Pete Domenici, R, New Mexico to not seek another term in office, Michelle Brown, a Flower Mound wife and mother, now resides in the local Autumn Leaves care facility. Her husband Bill and children struggle with the diagnosis and all its implications, and Bill has started the first support group in the state for other families coping with the same diagnosis.
The disease, commonly referred to as FTD, is Frontotemporal Dementia. It causes a gradual decline in behavior and language, which differs greatly from the more widely known Alzheimer’s disease, which robs its victims of memory. Brown says this disease affects about 250,000 Americans, and his 46 year old wife Michelle was diagnosed with the illness about 16 months ago. There is no treatment of cure. In retrospect, though, the Bridlewood resident says symptoms started back in 2003 when Michelle started becoming very reclusive.
It was a long road to getting any answers, and first Michelle was diagnosed with severe depression in 2005, two years after family and friends started noticing bizarre behavior that included “exercising” by pacing and walking in circles in the house even though the family has a gym membership. Michelle also began to have minor car accidents, spend almost 100% of her time alone and make financial mistakes that were very out of character. Other changes included when Michelle quit answering her cell phone, stopped routine personal hygiene and began to horde items. “At one time, we had 50 cans of shaving crème,” says Brown, “that she had stocked up on.” During her decline, she still managed to volunteer at the Flower Mound Library.
After finally getting the diagnosis of FTD in June of 2006, Brown says he felt like the “whole family had been in a drive by shooting.” About 14 months later, the family made the painful decision for Michelle to move into Autumn Leaves in Flower Mound, a 24 hour facility that specializes in dementia and Alzheimer’s. In a study done by the University of California, San Francisco, the average person, from the time of diagnosis, lived only about three and a half years. Brown says Michelle has adjusted to the move very well. “We wanted her to get the best care possible and preserve some positive memories for the kids.” She is the youngest resident there, with the next youngest person being 22 years her senior.
Now, Brown is left trying to function as both mother and father to their three children, 16 year old Wes, 13 year old Alexandra and 8 year old Harrison. The community, says Brown, has been very helpful through her illness, by emotional support, bringing meals and helping him get his children all the places they need to go.
Now, Brown would like to give something back to others by starting a support group for families in the Dallas Metroplex dealing with the same illness. The group, which is going to meet every 8 weeks, already has a membership of 12 families who live in places including Plano, Shady Shores, Arlington and Fort Worth.
“I want to really help families deal with the impact of this illness,” states Brown, adding that while families of those with Alzheimers are able to find plenty of resources and information, there are limited resources for the families of those with FTD. He says families need a lot of support because this is like no other disease. “I don’t think she really realizes anything is wrong with her,” says Brown of his wife of 17 years.
Brown believes that several surgeries his wife underwent could have contributed to the onset of FTD, as he says a neurologist told him if you have a gene for dementia, which his wife does, that the more often you are exposed to anesthesia, there is a chance for the disease to accelerate. “We can trace back to those surgery dates a change in behavior,” says Brown.
November is FTD Awareness Month, and the Association for Frontotemporal Dementias non profit group asks that everyone tell 10 people about the disease in November to raise funds and awareness. Many events will be held that month to help raise money for a new FTD Drug Discovery Program to find a medical intervention for FTD families. The goal is to raise $100,000 by the end of the year. Bill’s support group will be organizing a cookbook to help raise funds for the cause. Bill and Michelle’s 13 year old daughter Alex is getting involved with the help of her fellow National Junior Honor Society members at Downing Middle School. Of his children, whom are mostly straight A students, Brown says he is “only trying to continue on what my wife started. I don’t want to fail her.”
If you would like more information about FTD, the support group, or the cookbook, you may contact Bill Brown at william24b@yahoo.com.