It has been a whirlwind 24 hours - but my mother is in a new home. With the help of Capitol staff, my new best friend at the Department of Health and Human Services, my tride and true friends and my very gracious loving family - I have survived. Thank you.
She is on a secure unit and with other patients with Alzheimer's, and is no longer odd man out. It will take her some getting used to, but she is no longer alone in this lonely disease.
If you would like to send cards and letters, her address is:
Sharon Gibbs
c/0 Colonial Manor Care Center
821 US Highway 81 West
New Braunfels, Texas 78130
I thought you would like to be the first to know. :)
Wednesday, April 11, 2007
Friday, April 6, 2007
Hello everyone.
After much thought I have decided to return to this idea of this blog. Welcome to entry #2.
These are trying times. Mom has regressed very severely since January when I began the idea of this blog. She officially has Lewy Body Dementia - you will find a description of the disaese below, to further help you further understand. Basically she has both symptoms of Parkinson's disease and Alzheimers. Needless to say, this is a not fun combination.
She is no longer talking, her wandering has become a severe problem, and is now pocketing food and not swallowing. The life in her eyes is gone, catatonic almost. Common in Lewy Bodies, she is currently living a world of thirty years ago - making it hard for her to recognize even me. Because of this, she is now beyond the care of the nursing staff and I am having to deal with the responsibility of moving her for the third time. This time to a full blown Alzheimer's unit. And honestly am unable to tell you how much time is left. She may have a few months or years, they are unable to determine.
As I have been working in the Texas Capitol for the last few months - I have been able to put a lot of my effort into finding resources and people to truly help. The problem with the bureaucratic system is running into dead ends and worst, being pawn off onto other clueless entities. It is a daily battle. I do not know how people who do not have legislative connections or "inquiries" truly get through the jungle. But it has been a god send to have people willing to guide me and introduce me to new avenues. It has taken alot of research and studying - I'm beginning to wonder where my medical degree is these days. :)
Happy Easter to everyone. Easter being the time of renewal, rebirth and rejoicing - I am truly blessed ... please keep us in your prayers.
After much thought I have decided to return to this idea of this blog. Welcome to entry #2.
These are trying times. Mom has regressed very severely since January when I began the idea of this blog. She officially has Lewy Body Dementia - you will find a description of the disaese below, to further help you further understand. Basically she has both symptoms of Parkinson's disease and Alzheimers. Needless to say, this is a not fun combination.
She is no longer talking, her wandering has become a severe problem, and is now pocketing food and not swallowing. The life in her eyes is gone, catatonic almost. Common in Lewy Bodies, she is currently living a world of thirty years ago - making it hard for her to recognize even me. Because of this, she is now beyond the care of the nursing staff and I am having to deal with the responsibility of moving her for the third time. This time to a full blown Alzheimer's unit. And honestly am unable to tell you how much time is left. She may have a few months or years, they are unable to determine.
As I have been working in the Texas Capitol for the last few months - I have been able to put a lot of my effort into finding resources and people to truly help. The problem with the bureaucratic system is running into dead ends and worst, being pawn off onto other clueless entities. It is a daily battle. I do not know how people who do not have legislative connections or "inquiries" truly get through the jungle. But it has been a god send to have people willing to guide me and introduce me to new avenues. It has taken alot of research and studying - I'm beginning to wonder where my medical degree is these days. :)
Happy Easter to everyone. Easter being the time of renewal, rebirth and rejoicing - I am truly blessed ... please keep us in your prayers.
Lewy Body Dementia
Dementia is a process whereby the person becomes progressively confused. The earliest signs are usually memory problems, changes in their way of speaking, such as forgetting words, and personality problems. Cognitive symptoms of dementia include poor problem solving, difficulty with learning new skills and impaired decision making.
Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer's disease as the most common form of dementia.
Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is "faking". This fluctuation is not related to the well-known "sundowning" of Alzheimer's. In other words, there is no specific time of day when confusion can be seen to occur.
Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.
Parkinsonism or Parkinson's Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson's mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.
REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)
Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.
Other Symptoms
Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.
Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.
Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.
Prognosis and Stages
No cure or definitive treatment for Lewy body dementia has been discovered as yet. The disease has an average duration of 5 to 7 years. It is possible, though, for the time span to be anywhere from 2 to 20 years, depending on several factors, including the person’s overall health, age and severity of symptoms.
Defining the stages of disease progression for LBD is difficult. The symptoms, medicine management and duration of LBD vary greatly from person to person. To further complicate the stages assessment, LBD has a progressive but vacillating clinical course. It is typical to observe a significance progression, followed by regression back to a higher functioning level. Downward fluctuations are often caused by medications, infections or other compromises to the immune system, but may also be due to the natural course of the disease.
Other causes of dementia should be ruled out first, such as alcoholism, overuse of medication, thyroid or metabolic problems. Strokes can also cause dementia. If these reasons are ruled out then the person is said to have a degenerative dementia. Lewy Body Dementia is second only to Alzheimer's disease as the most common form of dementia.
Fluctuations in cognition will be noticeable to those who are close to the person with LBD, such as their partner. At times the person will be alert and then suddenly have acute episodes of confusion. These may last hours or days. Because of these fluctuations, it is not uncommon for it to be thought that the person is "faking". This fluctuation is not related to the well-known "sundowning" of Alzheimer's. In other words, there is no specific time of day when confusion can be seen to occur.
Hallucinations are usually, but not always, visual and often are more pronounced when the person is most confused. They are not necessarily frightening to the person. Other modalities of hallucinations include sound, taste, smell, and touch.
Parkinsonism or Parkinson's Disease symptoms, take the form of changes in gait; the person may shuffle or walk stiffly. There may also be frequent falls. Body stiffness in the arms or legs, or tremors may also occur. Parkinson's mask (blank stare, emotionless look on face), stooped posture, drooling and runny nose may be present.
REM Sleep Behavior Disorder (RBD) is often noted in persons with Lewy Body Dementia. During periods of REM sleep, the person will move, gesture and/or speak. There may be more pronounced confusion between the dream and waking reality when the person awakens. RBD may actually be the earliest symptom of LBD in some patients, and is now considered a significant risk factor for developing LBD. (One recent study found that nearly two-thirds of patients diagnosed with RBD developed degenerative brain diseases, including Lewy body dementia, Parkinson’s disease, and multiple system atrophy, after an average of 11 years of receiving an RBD diagnosis. All three diseases are called synucleinopathies, due to the presence of a mis-folded protein in the brain called alpha-synuclein.)
Sensitivity to neuroleptic (anti-psychotic) drugs is another significant symptom that may occur. These medications can worsen the Parkinsonism and/or decrease the cognition and/or increase the hallucinations. Neuroleptic Malignancy Syndrome, a life-threatening illness, has been reported in persons with Lewy Body Dementia. For this reason, it is very important that the proper diagnosis is made and that healthcare providers are educated about the disease.
Other Symptoms
Visuospatial difficulties, including depth perception, object orientation, directional sense and illusions may occur.
Autonomic dysfunction, including blood pressure fluctuations (e.g. postural/orthostatic hypotension) heart rate variability (HRV), sexual disturbances/impotence, constipation, urinary problems, hyperhidrosis (excessive sweating), decreased sweating/heat intolerance, syncope (fainting), dry eyes/mouth, and difficulty swallowing which may lead to aspiration pneumonia.
Other psychiatric disturbances may include systematized delusions, aggression and depression. The onset of aggression in LBD may have a variety of causes, including infections (e.g., UTI), medications, misinterpretation of the environment or personal interactions, and the natural progression of the disease.
Prognosis and Stages
No cure or definitive treatment for Lewy body dementia has been discovered as yet. The disease has an average duration of 5 to 7 years. It is possible, though, for the time span to be anywhere from 2 to 20 years, depending on several factors, including the person’s overall health, age and severity of symptoms.
Defining the stages of disease progression for LBD is difficult. The symptoms, medicine management and duration of LBD vary greatly from person to person. To further complicate the stages assessment, LBD has a progressive but vacillating clinical course. It is typical to observe a significance progression, followed by regression back to a higher functioning level. Downward fluctuations are often caused by medications, infections or other compromises to the immune system, but may also be due to the natural course of the disease.
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