Tamara at age 32 in 2004 during a family reunion in New York.
Tamara age 36 at home in Lenexa, Kansas on her tricked out scooter.
My daughters "fight" and "life" with Huntingtons Disease started when Tamara was 18 yrs old and began to have episodes of anxiety followed by long periods of depression. We assumed this was because of a failed relationship and she was pregnant. Tami had always been a happy, outgoing person so we knew this would be temporary and we sent her to all the appropriate doctors for her condition.
When her son died hours after birth her symptoms became more severe and for the first time I worried that she might actually be showing the emotional problems her father had suffered with since his early teens. For six long years Tami dealt with severe and debilitating drpression, anxiety and various attempts at suicide. All of her hours, days, weeks, months and years were spent with doctors and counselors, drowning in the drugs they prescribed, her social life was in her bedroom with her TV. She went from a junior size 4 in clothing to a womens size XL, had chronic nosebleeds, stomach pain, lost her sense of smell and taste and cried for hours every day. During these years her doctors and counselors told her to "get a job, learn to meditate, stop thinking about yourself, get a boyfriend, get out more." As a family we were led to believe she was an attention seeking sociopath wanting to be taken care of. Knowing her grandfathers and father's history, the medical profession let her down severely, she lost many years of her life and came close to death countless times.
In 1999 we moved to Kansas and started her right away with the local mental health community in Overland Park. On her first visit I was stunned to hear the doctor say he was fairly sure he knew what was wrong and it was not something she was doing to get attention, she has a real health problem. He sent her to KUMC (Kansas University Medical Center) http://www.kumc.edu/ for tests and very quickly they confirmed his suspicions that she had Huntingtons Disease. I wish I could say I was relieved to finally know the problem but after going to the HDSA http://www.hdsa.com/ web site and reading only the first paragraph, I was sick with fear for my daughter. Kansas has one of the few Huntingtons research hospitals in the US so she was started on what they considered the appropriate and necessary plan of care. How horribly wrong that would be!
Huntingtons Disease wasn't known in the 1960's and 1970's when I was with Tami's father so his diagnosis and treatment of "manic depression, obsessive compulsion, and paranoid schizophrenia" was simply accepted because I didn't know better. He was tested at the age of 57 and has the disease; now we have a greater fear than mental illnes or alcoholism, how many children, grandchildren and great grandchildren have the disease!
It would be painful to go into the long history of neglect Tami suffered at the hands of doctors, psychiatrists, nursing home staff and ultimately the staff at Osawatami State Hospital. The collective answer for all of her symptoms was; "she has Huntingtons Disease, this is what it does, there is no cure, this is the way she will be until she dies." The amount of drugs put into her tiny body was horrific to me, just a plain aspirin person. Research using books, videos and the internet told me quickly that 90% of her symptoms were not the disease; they were the result of the drugs. Chronic nosebleeds, diarrhea, stomach pain and headaches were not part of the disease. The drugs were being used to alleviate the anxiety, depression, aggressive behavior and the movement disorder. The drugs were causing anxiety, depression, aggressive behavior, nosebleeds, diarrhea, stomach pain, headaches, loss of appetite resulting in gross malnutrition, loss of smell and taste.
When she looked like a holocaust victim, I asked if I could bring her nutritious "power" drinks and vitamins. The answer was no! with no real explanation. Could you cut back on some of the redundant drugs? No, she needs them! If she misbehaved she was given more drugs until finally she was overdosed and had to be taken to the ER. There the doctors found what they described as a "raging" urinary tract infection and her body overdosed on Haldol. She had pin pricks on her legs, rug burn on her knees and shins, bloody gums and lips, petechial hemorrhaging on her chest and shoulders. The ER staff called the state hospital to berate them but apparently that was all they could do. That did make me realize what had happened was not usual and I needed to act on it. I contacted every state, federal and local agency dealing with nursing home and state hospitals, talked with social workers and her doctors including her neurologist. I think by now you know their answer; "she does have Huntingtons you know."
Tami was sent to Osawatamie State Hospital because her aggressive behavior was dangerous to her and anyone around her. I was told she was on her last legs and probably did not have much time left. At this point she would sit in her wheelchair and respond to very little, just droop and drool. I decided it was time to take her home before she was killed with drugs, physical restraints and unconcern.
As you would expect, I was opposed by everyone including Tami. She was afraid to be away from the environment she had known for 5 years where she felt safe knowing someone was there to give her a drug or put her in restraints and into a room where she couldn't hurt anyone. I was taking a huge chance but I needed to try. I could never recommend this as the right thing to do for everyone.
The first few weeks were a nightmare. I had no one to help me but myself, the medical and mental health system would not help because I had taken Tami home without their approval.
I brought Tami home on Nov. 19th, 2002 and filled her with all the power drinks I could. They were made with ice cream, yogurt, eggs, vitamins and bananas. She loved pancakes and ravioli so her diet was limited but nutritious. When we went out to eat she would enjoy oatmeal with raisins and lots of sugar. Within weeks she lost the hollow cheeks and gained weight around her ribs. In January, 2003 I started taking away miniscule amounts of her drugs without telling her so she would not be afraid. Each month I would let her know what I had done the previous month so very quickly she went along with the plan. It took two years of cutting back but by 2004 Tami was 100% drug free and feeling like a new person. I took her to see her neurologist so he could see how well she had done, she could walk now and laugh. Can you guess what his reply was? Of course; "Tami, you know you are going to die of this disease, you cant't change it. Not a word of encouragement, no smile and a pat on the back for how she had pulled herself away from the drugs and was a better and healthier person. Tami smiled and stood up, we left and will not go back.
Tami has been drug free for 4 years, she has gone from droop and drool to feeding and dressing herself, with the help of the in store scooter she does her own shopping. Her physical and emotional health have improved to a point where she does her own yearly interviews with her resource counselor Kristin. She has a battery operated scooter and travels our neighborhood, rides the trails and visits with anyone she sees. With a huge yellow umbrella and a horn, she lets herself be known.
This has been a dangerous journey, it has not been anywhere near fun, but the outcome has been all that I could have hoped for. Tami would like to be cured but I know that will not happen. The rest of the story has yet to come.
When her son died hours after birth her symptoms became more severe and for the first time I worried that she might actually be showing the emotional problems her father had suffered with since his early teens. For six long years Tami dealt with severe and debilitating drpression, anxiety and various attempts at suicide. All of her hours, days, weeks, months and years were spent with doctors and counselors, drowning in the drugs they prescribed, her social life was in her bedroom with her TV. She went from a junior size 4 in clothing to a womens size XL, had chronic nosebleeds, stomach pain, lost her sense of smell and taste and cried for hours every day. During these years her doctors and counselors told her to "get a job, learn to meditate, stop thinking about yourself, get a boyfriend, get out more." As a family we were led to believe she was an attention seeking sociopath wanting to be taken care of. Knowing her grandfathers and father's history, the medical profession let her down severely, she lost many years of her life and came close to death countless times.
In 1999 we moved to Kansas and started her right away with the local mental health community in Overland Park. On her first visit I was stunned to hear the doctor say he was fairly sure he knew what was wrong and it was not something she was doing to get attention, she has a real health problem. He sent her to KUMC (Kansas University Medical Center) http://www.kumc.edu/ for tests and very quickly they confirmed his suspicions that she had Huntingtons Disease. I wish I could say I was relieved to finally know the problem but after going to the HDSA http://www.hdsa.com/ web site and reading only the first paragraph, I was sick with fear for my daughter. Kansas has one of the few Huntingtons research hospitals in the US so she was started on what they considered the appropriate and necessary plan of care. How horribly wrong that would be!
Huntingtons Disease wasn't known in the 1960's and 1970's when I was with Tami's father so his diagnosis and treatment of "manic depression, obsessive compulsion, and paranoid schizophrenia" was simply accepted because I didn't know better. He was tested at the age of 57 and has the disease; now we have a greater fear than mental illnes or alcoholism, how many children, grandchildren and great grandchildren have the disease!
It would be painful to go into the long history of neglect Tami suffered at the hands of doctors, psychiatrists, nursing home staff and ultimately the staff at Osawatami State Hospital. The collective answer for all of her symptoms was; "she has Huntingtons Disease, this is what it does, there is no cure, this is the way she will be until she dies." The amount of drugs put into her tiny body was horrific to me, just a plain aspirin person. Research using books, videos and the internet told me quickly that 90% of her symptoms were not the disease; they were the result of the drugs. Chronic nosebleeds, diarrhea, stomach pain and headaches were not part of the disease. The drugs were being used to alleviate the anxiety, depression, aggressive behavior and the movement disorder. The drugs were causing anxiety, depression, aggressive behavior, nosebleeds, diarrhea, stomach pain, headaches, loss of appetite resulting in gross malnutrition, loss of smell and taste.
When she looked like a holocaust victim, I asked if I could bring her nutritious "power" drinks and vitamins. The answer was no! with no real explanation. Could you cut back on some of the redundant drugs? No, she needs them! If she misbehaved she was given more drugs until finally she was overdosed and had to be taken to the ER. There the doctors found what they described as a "raging" urinary tract infection and her body overdosed on Haldol. She had pin pricks on her legs, rug burn on her knees and shins, bloody gums and lips, petechial hemorrhaging on her chest and shoulders. The ER staff called the state hospital to berate them but apparently that was all they could do. That did make me realize what had happened was not usual and I needed to act on it. I contacted every state, federal and local agency dealing with nursing home and state hospitals, talked with social workers and her doctors including her neurologist. I think by now you know their answer; "she does have Huntingtons you know."
Tami was sent to Osawatamie State Hospital because her aggressive behavior was dangerous to her and anyone around her. I was told she was on her last legs and probably did not have much time left. At this point she would sit in her wheelchair and respond to very little, just droop and drool. I decided it was time to take her home before she was killed with drugs, physical restraints and unconcern.
As you would expect, I was opposed by everyone including Tami. She was afraid to be away from the environment she had known for 5 years where she felt safe knowing someone was there to give her a drug or put her in restraints and into a room where she couldn't hurt anyone. I was taking a huge chance but I needed to try. I could never recommend this as the right thing to do for everyone.
The first few weeks were a nightmare. I had no one to help me but myself, the medical and mental health system would not help because I had taken Tami home without their approval.
I brought Tami home on Nov. 19th, 2002 and filled her with all the power drinks I could. They were made with ice cream, yogurt, eggs, vitamins and bananas. She loved pancakes and ravioli so her diet was limited but nutritious. When we went out to eat she would enjoy oatmeal with raisins and lots of sugar. Within weeks she lost the hollow cheeks and gained weight around her ribs. In January, 2003 I started taking away miniscule amounts of her drugs without telling her so she would not be afraid. Each month I would let her know what I had done the previous month so very quickly she went along with the plan. It took two years of cutting back but by 2004 Tami was 100% drug free and feeling like a new person. I took her to see her neurologist so he could see how well she had done, she could walk now and laugh. Can you guess what his reply was? Of course; "Tami, you know you are going to die of this disease, you cant't change it. Not a word of encouragement, no smile and a pat on the back for how she had pulled herself away from the drugs and was a better and healthier person. Tami smiled and stood up, we left and will not go back.
Tami has been drug free for 4 years, she has gone from droop and drool to feeding and dressing herself, with the help of the in store scooter she does her own shopping. Her physical and emotional health have improved to a point where she does her own yearly interviews with her resource counselor Kristin. She has a battery operated scooter and travels our neighborhood, rides the trails and visits with anyone she sees. With a huge yellow umbrella and a horn, she lets herself be known.
This has been a dangerous journey, it has not been anywhere near fun, but the outcome has been all that I could have hoped for. Tami would like to be cured but I know that will not happen. The rest of the story has yet to come.
