Build Care Facilities
Posted by Sharon Dunn
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Build Care Facilities May 31, 2001 09:17PM |
California Dreamin'
Huntington's disease is a fatal, auto somal dominant neurological illness causing involuntary movements, severe emotional disturbance and cognitive decline. Huntington's disease usually strikes in mid-life, in the thirties or forties, although it can also attack children and the elderly. There is no treatment to halt the inexorable progression, which leads to death after ten to twenty-five years.
Because it is an auto somal dominant disorder, each child of a parent with Huntington's disease has a 50% risk of inheriting the illness. In the United States, the prevalence of the disease is about 10 cases per 100,000 people - about 30,000 people in all. There are another 150,000 people at risk. Coping with the devastating effects of Huntington's Disease can be emotionally, physically, and financially overwhelming.
Because Huntington's disease destroys so many different capabilities - intellectual, physical and emotional - the insights gained from research on this illness are relevant to the understanding of many others, including schizophrenia, manic depression, Alzheimer's, amyotrophic lateral sclerosis (Lou Gehrig's disease), Parkinson's disease, and cancer. By focusing on Huntington's disease as a model, neurological and genetic functions relevant to a broad spectrum of disorders are targeted.
My Mother died March 4, 2201 after a long battle with Huntington's disease. My Great Grandmother, Grandmother, Mother, and Brother inherited this gene that somehow escaped my sister and me. My brother has two boys at risk.
Not long ago, my sister and I were talking about how lucky we are. I laughed at her at first, but then we did find ways in which we are lucky. For one, many families with Huntington's disease (HD) have more children with the gene. We only had one out of three. Families can be destroyed by this disease but ours grows closer and the bonds strengthen us beyond belief.
My mother's brain was harvested for research and sent to the Brain Bank in Los Angeles, so even in her death she fights for her children's children. This was a bold step for our family in supporting research. We've waited generations for a cure and we will continue to support research, but there is a another pressing issue we need to address. As long as we've waited for a cure, we've also waited for proper care and treatment for our family members with the HD gene.
My husband, Chris, is a commercial/industrial Real Estate Broker and Developer who, after 28 years of watching my family struggle with what has been referred to as the diabolical disease of mankind, has a dream to build a care facility for people with HD. We have trouble placing our loved ones in care facilities and even more trouble caring for them ourselves. If we get lucky and they get admitted somewhere, we are amazed at how they are cared for by people who know nothing about how to care for them.
We have a dream...it is not unique, I'm sure, but we dream of building a home for people with Huntington's disease. I say "home" because we want to welcome them at whatever stage they are at. We figure that they can take care of each other too. Those who are able can help those who are disabled. Their home would be a haven for them, where they would no longer be isolated.
I remember when my brother was diagnosed and he said, "Oh my God, I will never be touched by another human being again." And accept for the hugs he gets from us, that is a true statement. He was a Landscape Contractor and still loves to garden. Wouldn't this dream home look lovely?
We have found land in Napa, California, about an hour away from the HDSA center at UC Davis where our residents could get specific medical care. It's 2.5 acres, already approved for 61 single-room beds and ready for building permits (27,000 sq.ft. at approximately $100 per foot to build). The land will cost approximately one million dollars. In California we also have the GHPP program (Genetically Handicapped Person's Program) which helps people with HD.
I live here in Napa, dreaming about a home for my family members who have inherited this gene. Every time a door shuts in my face, or my family is rejected because they have Huntington's disease, I look back on my dream and wonder when it will come true just as I wonder when, and if, our next generation will test positive.
I thought I'd just put our dream out there because that's the only way dreams do come true. I see this home with lovely gardens, a theater, and lots of comfortable-protected from the weather-designated smoking areas. I see a lovely, welcoming living room where people come together for support, love and care and maybe even dating! I see my fantasy kitchen, pungent and inviting, where high calorie meals are always cooking. I see professionals, who have HD, working beyond the time they would be allowed to work otherwise,and helping others so that having a purpose inspires a longer and healthier life. I see a music room with a Steinway baby-grand piano and every instrument ever made, and me, the music therapist in my glory...I see people dancing, singing, eating, playing, crying, laughing, living...not dying.
Maybe there are other models like this that we can draw upon for support? Maybe there should be many more of these homes developed? All I know is that we are looking for money and support to build this dream so that we no longer have to look for a home for our family members with HD.
My sister, who is an Administrator, MSW/ LCSW, of Sonoma Developmental Center-900 developmental disabled residents-tells me that my dream is not only possible, but probable. I've been receiving emails from all over, encouraging me to go after my dream, so here I am...California dreamin',
join me,
Sharon Dunn
Shareon*at*aol.com
Newsletter Submission? Redirected to the masses? Let's get the message out. Thank you.
Huntington's disease is a fatal, auto somal dominant neurological illness causing involuntary movements, severe emotional disturbance and cognitive decline. Huntington's disease usually strikes in mid-life, in the thirties or forties, although it can also attack children and the elderly. There is no treatment to halt the inexorable progression, which leads to death after ten to twenty-five years.
Because it is an auto somal dominant disorder, each child of a parent with Huntington's disease has a 50% risk of inheriting the illness. In the United States, the prevalence of the disease is about 10 cases per 100,000 people - about 30,000 people in all. There are another 150,000 people at risk. Coping with the devastating effects of Huntington's Disease can be emotionally, physically, and financially overwhelming.
Because Huntington's disease destroys so many different capabilities - intellectual, physical and emotional - the insights gained from research on this illness are relevant to the understanding of many others, including schizophrenia, manic depression, Alzheimer's, amyotrophic lateral sclerosis (Lou Gehrig's disease), Parkinson's disease, and cancer. By focusing on Huntington's disease as a model, neurological and genetic functions relevant to a broad spectrum of disorders are targeted.
My Mother died March 4, 2201 after a long battle with Huntington's disease. My Great Grandmother, Grandmother, Mother, and Brother inherited this gene that somehow escaped my sister and me. My brother has two boys at risk.
Not long ago, my sister and I were talking about how lucky we are. I laughed at her at first, but then we did find ways in which we are lucky. For one, many families with Huntington's disease (HD) have more children with the gene. We only had one out of three. Families can be destroyed by this disease but ours grows closer and the bonds strengthen us beyond belief.
My mother's brain was harvested for research and sent to the Brain Bank in Los Angeles, so even in her death she fights for her children's children. This was a bold step for our family in supporting research. We've waited generations for a cure and we will continue to support research, but there is a another pressing issue we need to address. As long as we've waited for a cure, we've also waited for proper care and treatment for our family members with the HD gene.
My husband, Chris, is a commercial/industrial Real Estate Broker and Developer who, after 28 years of watching my family struggle with what has been referred to as the diabolical disease of mankind, has a dream to build a care facility for people with HD. We have trouble placing our loved ones in care facilities and even more trouble caring for them ourselves. If we get lucky and they get admitted somewhere, we are amazed at how they are cared for by people who know nothing about how to care for them.
We have a dream...it is not unique, I'm sure, but we dream of building a home for people with Huntington's disease. I say "home" because we want to welcome them at whatever stage they are at. We figure that they can take care of each other too. Those who are able can help those who are disabled. Their home would be a haven for them, where they would no longer be isolated.
I remember when my brother was diagnosed and he said, "Oh my God, I will never be touched by another human being again." And accept for the hugs he gets from us, that is a true statement. He was a Landscape Contractor and still loves to garden. Wouldn't this dream home look lovely?
We have found land in Napa, California, about an hour away from the HDSA center at UC Davis where our residents could get specific medical care. It's 2.5 acres, already approved for 61 single-room beds and ready for building permits (27,000 sq.ft. at approximately $100 per foot to build). The land will cost approximately one million dollars. In California we also have the GHPP program (Genetically Handicapped Person's Program) which helps people with HD.
I live here in Napa, dreaming about a home for my family members who have inherited this gene. Every time a door shuts in my face, or my family is rejected because they have Huntington's disease, I look back on my dream and wonder when it will come true just as I wonder when, and if, our next generation will test positive.
I thought I'd just put our dream out there because that's the only way dreams do come true. I see this home with lovely gardens, a theater, and lots of comfortable-protected from the weather-designated smoking areas. I see a lovely, welcoming living room where people come together for support, love and care and maybe even dating! I see my fantasy kitchen, pungent and inviting, where high calorie meals are always cooking. I see professionals, who have HD, working beyond the time they would be allowed to work otherwise,and helping others so that having a purpose inspires a longer and healthier life. I see a music room with a Steinway baby-grand piano and every instrument ever made, and me, the music therapist in my glory...I see people dancing, singing, eating, playing, crying, laughing, living...not dying.
Maybe there are other models like this that we can draw upon for support? Maybe there should be many more of these homes developed? All I know is that we are looking for money and support to build this dream so that we no longer have to look for a home for our family members with HD.
My sister, who is an Administrator, MSW/ LCSW, of Sonoma Developmental Center-900 developmental disabled residents-tells me that my dream is not only possible, but probable. I've been receiving emails from all over, encouraging me to go after my dream, so here I am...California dreamin',
join me,
Sharon Dunn
Shareon*at*aol.com
Newsletter Submission? Redirected to the masses? Let's get the message out. Thank you.
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RE: Build Care Facilities June 05, 2001 07:16AM |
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