Long-term effects--the concept, not specific manifestations of my anticonvulsants--are illustrated best by telling you about a specific appointment with my neurologist.
I went into a routine checkup with my neurologist with no anticipation of any medication changes. At that point in time, I had no sense of "medical partnership" much less "a healthy, intelligent medical partnership with my neurologist--with any of my health care providers. The appointment I share was one of many events and circumstances that motivated my desire for a "healthy, intelligent medical partnership" paradigm.
At my regular neurology checkup, my neurologist said she wanted to take me off of an anticonvulsant I had taken since childhood. She said she needed to substitute a different anticonvulsant to ensure that I would not have a seizure in the future. [I was taking a second anticonvulsant that the neurologist had no intent in changing.] My neurologist threw out the names of a bunch of anticonvulsants, the names of which I had no familiarity, much less knowledge. She well may have told me the side effects of each option. All I heard her say after giving the list was, "I would recommend..." after which she gave me the name of the anticonvulsant. I sat on the examining table and thought, "OK, I trust you. You know far better than I do. These drug names are Greek to me."
Shortly after giving me her recommendation, my ears perked up. "If you were to go onto this anticonvulsant, I would need to put you onto it slowly. Starting you at full strength could be lethal."
Let's see now. The anticonvulsant I have taken since childhood could cause liver damage, if I were take it too long. Yet, the medication you are recommending could be lethal, if full-strength levels of it were to be prescribed when I started taking it.
Hmmm....What are my choices again?
Clearly, literacy, education, communication, and self-advocacy were missing--were needed--here. A healthy, intelligent medical partnership depends on it. Blame--on either side--of what didn't happen, or dismissal--of what did happen--have no place.
Humor is essential. Don't be mistaken. Humor is vital in making this relationship work. Humor directs both partners to where the needs lie.
Showing posts with label epilepsy. Show all posts
Showing posts with label epilepsy. Show all posts
Thursday, November 29, 2012
Saturday, November 24, 2012
The Dentist and Dental Technicians
Going to my dentist--my dentists over the years--and seeing my dental technicians spotlights the matters of "side effects" and "physical capabilities."
For many years, I took an anticonvulsant to control my seizures--an anticonvulsant whose side effect was inflamed gums, among others. As a child, I was not aware of other anticonvulsants that existed to control seizures. I don't know whether that was a function of my age, or of the anticonvulsants that were available for doctors to prescribe. It well may be that it was a function of both. Whatever the availability of anticonvulsants in the 1960s, and 1970s, the effect was the same. I knew I had seizures. My seizures needed to be controlled by anticonvulsants.
That said, each time I went to my routine dental appointment, I understood that I was going to determine whether or not I had any cavities. Time and again, my dentist would look in my mouth and say, "Your gums are inflamed."
"I take an anticonvulsant that is known to inflame gums."
"Well, try harder when you brush your teeth. Floss your teeth. That will really help to reduce the inflammation," the dentist would say.
Time and again, I felt guilty. I was frustrated. I felt angry.
"Listen. I cannot hold, much less manipulate the floss. My right hand is affected by my cerebral palsy. Due to the nature of my cerebral palsy, my right arm is inordinately stiff. I don't think about it that much, because I have never known my right hand to be any other way. But, for purposes here, purposes of self-disclosure, it is an important point to include.
\ "I cannot position my hand, and hold it steady to move the floss between my teeth. I cannot floss. Don't tell me to floss. It isn't going to happen. I did not know until later in my life to say that I did not have "fine motor skills" in my right hand."
I am not sure whether I had said that as a kid, the dentist would have understood what I was saying. I did not know how to convey that if I could grasp onto the floss that I could not guarantee that I could hold onto the floss.
The saying, "the right hand does not know what the left hand is doing," is true for me. Until recent years, I have not been able to grasp onto much larger objects with my right hand, and hold onto them. For many years, I would need to guide my right hand into a given position with my left hand, before my left hand could go back to performing its role in a given task. Even if I was successful in strong arming my right hand, I could not guarantee that my right hand would continue to hold up her end of the bargain.
The scenario with the flossing, has continued beyond one dentist. I confess that I have not been a model patient. I do not know what might have been different had my guilt, anger, and frustration clouded my efforts.
Self-advocacy and public education have been essential throughout my life. To this day, I need to be at the ready to advocate for myself, and provide on-the-spot public education. Self-advocacy is a matter of dispelling preconceptions, myths, and biases. Accomplishing these three goals is achieving a "healthy, intelligent medical partnership."
For many years, I took an anticonvulsant to control my seizures--an anticonvulsant whose side effect was inflamed gums, among others. As a child, I was not aware of other anticonvulsants that existed to control seizures. I don't know whether that was a function of my age, or of the anticonvulsants that were available for doctors to prescribe. It well may be that it was a function of both. Whatever the availability of anticonvulsants in the 1960s, and 1970s, the effect was the same. I knew I had seizures. My seizures needed to be controlled by anticonvulsants.
That said, each time I went to my routine dental appointment, I understood that I was going to determine whether or not I had any cavities. Time and again, my dentist would look in my mouth and say, "Your gums are inflamed."
"I take an anticonvulsant that is known to inflame gums."
"Well, try harder when you brush your teeth. Floss your teeth. That will really help to reduce the inflammation," the dentist would say.
Time and again, I felt guilty. I was frustrated. I felt angry.
"Listen. I cannot hold, much less manipulate the floss. My right hand is affected by my cerebral palsy. Due to the nature of my cerebral palsy, my right arm is inordinately stiff. I don't think about it that much, because I have never known my right hand to be any other way. But, for purposes here, purposes of self-disclosure, it is an important point to include.
\ "I cannot position my hand, and hold it steady to move the floss between my teeth. I cannot floss. Don't tell me to floss. It isn't going to happen. I did not know until later in my life to say that I did not have "fine motor skills" in my right hand."
I am not sure whether I had said that as a kid, the dentist would have understood what I was saying. I did not know how to convey that if I could grasp onto the floss that I could not guarantee that I could hold onto the floss.
The saying, "the right hand does not know what the left hand is doing," is true for me. Until recent years, I have not been able to grasp onto much larger objects with my right hand, and hold onto them. For many years, I would need to guide my right hand into a given position with my left hand, before my left hand could go back to performing its role in a given task. Even if I was successful in strong arming my right hand, I could not guarantee that my right hand would continue to hold up her end of the bargain.
The scenario with the flossing, has continued beyond one dentist. I confess that I have not been a model patient. I do not know what might have been different had my guilt, anger, and frustration clouded my efforts.
Self-advocacy and public education have been essential throughout my life. To this day, I need to be at the ready to advocate for myself, and provide on-the-spot public education. Self-advocacy is a matter of dispelling preconceptions, myths, and biases. Accomplishing these three goals is achieving a "healthy, intelligent medical partnership."
Friday, November 23, 2012
Foundation of a Medical Partnership
In order to articulate my concept of a "healthy, intelligent medical partnership," I must answer answer several basic questions, and share the presumptions I am making.
1. Whom do I conceive to be the people included in a "healthy, medical partnership"?
2. To whom do I intend my comments apply?
3. Could "a healthy, intelligent medical partnership" be applied to a wider group of individuals than I describe?
For clarity's sake, I speak of "a" healthy, intelligent medical partnership, but, do not be mistaken. What I conceive of is not one-dimensional. Just as any law firm, medical practice, business, or family, for that matter, more than two individuals are involved. As such, there are interrelationships that create and nurture the partnership. However, in order for my partnership to be healthy and intelligent, it must be broken down into smaller components, and then reassembled once it is understood, so that it may live and breathe--so that it may thrive.
Included in a "healthy, intelligent medical partnership" are individuals with disabilities, and "health care providers," as I define them herein. My intent is that my concept must apply to everyone to whom I address, or it has no chance of working--of being effective. Finally, although the statutory definition of "disability" that I begin with--the Americans with Disabilities Act of 1990 (ADA) definition of "disability--would seem to exclude many individuals from my model, every individual is included. That will become clear when I offer my definition of "individual with a disability."
Questions articulated, brief answers outlined, let me make clear that I speak for myself. Even if I was so arrogant, and pompous to believe otherwise, I am not omnipotent:) I can specify seven or six basic descriptions of myself that are the basis of my reflections, I do not describe everyone who use the same terms to describe a part of who they are. That said, I offer an alphabetical list of descriptions. An alphabetical list--I cannot prioritize the list more effectively.
1. Born in 1960
2. Born and living in the United States
3. Cerebral palsy
4. Epilepsy--manifested by seizures
5. Osteoarthritis
6. Tremors
7. A woman
I have had many discussions with women affected by cerebral palsy, and epilepsy. My interactions with men who live with cerebral palsy date back to the 1980s. I cannot remember more recent conversations. I believe more such conversations would serve to enrich and enhance understanding and insight.
Being born in 1960, I have lived through greater openness regarding, and receptivity to what we now call "individuals with disabilities." To show the progress we have made in language, I attended a school with the important part of its name being "School for Crippled Children." I omit the full name because my intent is not to condemn what the school offered. My intent is to demonstrate what language was accepted during the middle 1960s. In the late 1970s and early 1980s, I was active in a "handicap" awareness committee. In the early 1980s, I worked for a disabilities council.
With my frame of reference established--a foundation laid--I may articulate my conception of a "healthy, intelligent medical partnership."
1. Whom do I conceive to be the people included in a "healthy, medical partnership"?
2. To whom do I intend my comments apply?
3. Could "a healthy, intelligent medical partnership" be applied to a wider group of individuals than I describe?
For clarity's sake, I speak of "a" healthy, intelligent medical partnership, but, do not be mistaken. What I conceive of is not one-dimensional. Just as any law firm, medical practice, business, or family, for that matter, more than two individuals are involved. As such, there are interrelationships that create and nurture the partnership. However, in order for my partnership to be healthy and intelligent, it must be broken down into smaller components, and then reassembled once it is understood, so that it may live and breathe--so that it may thrive.
Included in a "healthy, intelligent medical partnership" are individuals with disabilities, and "health care providers," as I define them herein. My intent is that my concept must apply to everyone to whom I address, or it has no chance of working--of being effective. Finally, although the statutory definition of "disability" that I begin with--the Americans with Disabilities Act of 1990 (ADA) definition of "disability--would seem to exclude many individuals from my model, every individual is included. That will become clear when I offer my definition of "individual with a disability."
Questions articulated, brief answers outlined, let me make clear that I speak for myself. Even if I was so arrogant, and pompous to believe otherwise, I am not omnipotent:) I can specify seven or six basic descriptions of myself that are the basis of my reflections, I do not describe everyone who use the same terms to describe a part of who they are. That said, I offer an alphabetical list of descriptions. An alphabetical list--I cannot prioritize the list more effectively.
1. Born in 1960
2. Born and living in the United States
3. Cerebral palsy
4. Epilepsy--manifested by seizures
5. Osteoarthritis
6. Tremors
7. A woman
I have had many discussions with women affected by cerebral palsy, and epilepsy. My interactions with men who live with cerebral palsy date back to the 1980s. I cannot remember more recent conversations. I believe more such conversations would serve to enrich and enhance understanding and insight.
Being born in 1960, I have lived through greater openness regarding, and receptivity to what we now call "individuals with disabilities." To show the progress we have made in language, I attended a school with the important part of its name being "School for Crippled Children." I omit the full name because my intent is not to condemn what the school offered. My intent is to demonstrate what language was accepted during the middle 1960s. In the late 1970s and early 1980s, I was active in a "handicap" awareness committee. In the early 1980s, I worked for a disabilities council.
With my frame of reference established--a foundation laid--I may articulate my conception of a "healthy, intelligent medical partnership."
Monday, November 19, 2012
The Birth of Medical Partnership
Few people, if any, speak of the notion of "a healthy, intelligent, medical practice," much less "a healthy, intelligent medical partnership." Typically, the relationship between doctor and patient is understood to be a meeting between a patient and a doctor. In such meeting, the patient is understood to report symptoms and/or complaints. In response to that information, the doctor prescribes a course of action, be it medication, diet, exercise, to name a few.
Health care reform, and budget-saving measures can serve to reinforce this mentality. I propose a different model that I believe need not be in opposition to the reform of health care, or budget-saving measures, but, rather, may be a means of achieving those two ends.
My perspective is based upon my 52 years of living with a variety of disabilities--cerebral palsy, epilepsy, osteoarthritis, and essential tremors. Each disability has spanned different times over my lifetime, and has had different effects on my perspective.
Though my cerebral palsy has been my intimate since birth, her impact on my developing and nurturing "a healthy, intelligent medical partnership" has been tangential to my other disabilities.
Epilepsy ranks second in its longevity in my life. I took my first anticonvulsant at the age of approximately six or seven.
Osteoarthritis, though not formally diagnosed at the time, began affecting my life at the age of 40. Unexplained stiffness in my right ankle seemed to me to be a mere manifestation of my cerebral palsy. Essential tremors are relatively recent intimates. First diagnosed in 2009, hindsight tells me fear prevented me from learning to live with essential tremors. First and foremost, I had never heard the term "essential tremors." I fancied myself to be a knowledgeable patient. Though not trained in sciences specific to medicine, in general, and neurology, specifically. still I considered myself to be fully informed. All I knew was my fears. I knew of three men with Parkinson's Disease, yet, my contact with them was second-hand--my contact with them was sporadic at best. Compounding my lack of contact, I knew little to nothing of the daily ins and outs of the condition--how did it affect the individual with it, not just the functional aspects.
That is the foundation upon which I endeavor to build medical partnerships with my doctors, nurses, lab technicians, and other non-medical personnel to the extent that my disabilities affect my relationships with them.
Health care reform, and budget-saving measures can serve to reinforce this mentality. I propose a different model that I believe need not be in opposition to the reform of health care, or budget-saving measures, but, rather, may be a means of achieving those two ends.
My perspective is based upon my 52 years of living with a variety of disabilities--cerebral palsy, epilepsy, osteoarthritis, and essential tremors. Each disability has spanned different times over my lifetime, and has had different effects on my perspective.
Though my cerebral palsy has been my intimate since birth, her impact on my developing and nurturing "a healthy, intelligent medical partnership" has been tangential to my other disabilities.
Epilepsy ranks second in its longevity in my life. I took my first anticonvulsant at the age of approximately six or seven.
Osteoarthritis, though not formally diagnosed at the time, began affecting my life at the age of 40. Unexplained stiffness in my right ankle seemed to me to be a mere manifestation of my cerebral palsy. Essential tremors are relatively recent intimates. First diagnosed in 2009, hindsight tells me fear prevented me from learning to live with essential tremors. First and foremost, I had never heard the term "essential tremors." I fancied myself to be a knowledgeable patient. Though not trained in sciences specific to medicine, in general, and neurology, specifically. still I considered myself to be fully informed. All I knew was my fears. I knew of three men with Parkinson's Disease, yet, my contact with them was second-hand--my contact with them was sporadic at best. Compounding my lack of contact, I knew little to nothing of the daily ins and outs of the condition--how did it affect the individual with it, not just the functional aspects.
That is the foundation upon which I endeavor to build medical partnerships with my doctors, nurses, lab technicians, and other non-medical personnel to the extent that my disabilities affect my relationships with them.
Thursday, August 16, 2012
Left Speechless
I love surprise. I am hard to surprise, but, I love surprise.
When I was born, my umbilical cord was wrapped around my neck five times. Oxygen was cut off to the left side of my brain, which controls the right side of my body. That physical reality of my birth caused my brain damage, which expresses itself through my cerebral palsy, and through my epilepsy.
When I was born, doctors told my dad that I might never walk, and I might never learn to talk. I have done both. Dad teases me--anyone who has known me for any length of time may agree--once you learned to talk, I wasn't sure you would stop talking.
I love to talk. I love surprise. Rarely am I rendered speechless. I smile when I remember those precious moments of speechless surprise.
Yet, not to diminish those moments of surprise, the prospect of losing speech, or living with impeded speech frightens me. I have no evidence to indicate that my future includes speech impediments. Yet, that is paramount in my fears. I fear little. I cannot afford to. Yet, I do fear losing the gift of speech. I am well aware of the doctor's words to Dad. I want to give Dad something he can continue to tease me about.
When I was born, my umbilical cord was wrapped around my neck five times. Oxygen was cut off to the left side of my brain, which controls the right side of my body. That physical reality of my birth caused my brain damage, which expresses itself through my cerebral palsy, and through my epilepsy.
When I was born, doctors told my dad that I might never walk, and I might never learn to talk. I have done both. Dad teases me--anyone who has known me for any length of time may agree--once you learned to talk, I wasn't sure you would stop talking.
I love to talk. I love surprise. Rarely am I rendered speechless. I smile when I remember those precious moments of speechless surprise.
Yet, not to diminish those moments of surprise, the prospect of losing speech, or living with impeded speech frightens me. I have no evidence to indicate that my future includes speech impediments. Yet, that is paramount in my fears. I fear little. I cannot afford to. Yet, I do fear losing the gift of speech. I am well aware of the doctor's words to Dad. I want to give Dad something he can continue to tease me about.
Confronting Fear
Confronting my fears--about my brain damage--through writing helps immeasurably. It is my indulgence. I hope it may be more than that, but, it does a world of good to air fears.
Dying of a seizure frightened me. My seizures are well controlled by anticonvulsants. I had heard of a form of seizures that kept going--status epilepticus. I had heard that during pre-menopause that bodily chemistry changed, or was unstable. Putting those two together, my paralyzing fear was that I would fall victim to status epilepticus. There was hardly anyone I could ask. My job was to assure family, friends, and colleagues--especially colleagues, who did not know me well--that it was highly unlikely that I would have a seizure. My mother was a whole lot of help. She had experienced no chemical imbalances during menopause. Doctors were clueless regarding the living realities of epilepsy. They knew little more than the chemical--the clinical--aspects of seizures.
Menopause--successful, peaceful menopause--was a gift. I could relinquish my fear, and move on to a new chapter of my life.
Fear has not left me. Yet, writing has liberated my fear--not eliminated it, but, writing has given voice to my fears. Some are put off by confessing--by confronting--fear.
Zoomer moved me away from fears of other people--of their judgments of my "chair." I do not begrudge anyone such fears. I am haunted by my fear of a co-worker's wheelchair. She died at the hands of her mentally-ill husband. She understood my fear. She did not confront me with it. We never spoke of it aloud. She knew that I needed to move through my fear. She could not force it. Jean, I wish you could have met Zoomer.
Being "given" less stamina, and less strength in my left hand, I am learning how to adjust. What may I say? What must I do? What help do I need?
Dying of a seizure frightened me. My seizures are well controlled by anticonvulsants. I had heard of a form of seizures that kept going--status epilepticus. I had heard that during pre-menopause that bodily chemistry changed, or was unstable. Putting those two together, my paralyzing fear was that I would fall victim to status epilepticus. There was hardly anyone I could ask. My job was to assure family, friends, and colleagues--especially colleagues, who did not know me well--that it was highly unlikely that I would have a seizure. My mother was a whole lot of help. She had experienced no chemical imbalances during menopause. Doctors were clueless regarding the living realities of epilepsy. They knew little more than the chemical--the clinical--aspects of seizures.
Menopause--successful, peaceful menopause--was a gift. I could relinquish my fear, and move on to a new chapter of my life.
Fear has not left me. Yet, writing has liberated my fear--not eliminated it, but, writing has given voice to my fears. Some are put off by confessing--by confronting--fear.
Zoomer moved me away from fears of other people--of their judgments of my "chair." I do not begrudge anyone such fears. I am haunted by my fear of a co-worker's wheelchair. She died at the hands of her mentally-ill husband. She understood my fear. She did not confront me with it. We never spoke of it aloud. She knew that I needed to move through my fear. She could not force it. Jean, I wish you could have met Zoomer.
Being "given" less stamina, and less strength in my left hand, I am learning how to adjust. What may I say? What must I do? What help do I need?
Monday, August 13, 2012
The Birth of Brain Damage Diary
Brain Damage Diary will be an extension of my reflections regarding brain damage through two other blogs I write--Patty's Ponderings, and Patty's Epilepsy Chronicles.
Brain Damage Diary will explore the subtleties that exceed the confines of epilepsy--the contents of Patty's Epilepsy Chronicles. Do not be mistaken. Epilepsy is one manifestation--one expression--of my brain damage.
Patty's Ponderings differs from my plans for Brain Damage Diary in its scope, and subtlety. Patty's Ponderings explores insights regarding world events, and daily living. Both blogs shall continue. I pray I may do justice to my other two blogs by developing this blog.
Brain damage expresses itself in two forms directly--cerebral palsy, and epilepsy. Osteoarthritis is not a direct manifestation of my brain damage. Rather, osteoarthritis is an expression of the aging process--a process accelerated by the brain damage I experienced at birth. So, I may refer to my osteoarthritis. Brain damage did not cause osteoarthritis in me. Brain damage introduced me to osteoarthritis earlier than I hoped it might. Pardon me in so doing. May my comments, insights, and reflections regarding osteoarthritis add to, rather than detract from my primary topic--brain damage.
Brain Damage Diary will explore the subtleties that exceed the confines of epilepsy--the contents of Patty's Epilepsy Chronicles. Do not be mistaken. Epilepsy is one manifestation--one expression--of my brain damage.
Patty's Ponderings differs from my plans for Brain Damage Diary in its scope, and subtlety. Patty's Ponderings explores insights regarding world events, and daily living. Both blogs shall continue. I pray I may do justice to my other two blogs by developing this blog.
Brain damage expresses itself in two forms directly--cerebral palsy, and epilepsy. Osteoarthritis is not a direct manifestation of my brain damage. Rather, osteoarthritis is an expression of the aging process--a process accelerated by the brain damage I experienced at birth. So, I may refer to my osteoarthritis. Brain damage did not cause osteoarthritis in me. Brain damage introduced me to osteoarthritis earlier than I hoped it might. Pardon me in so doing. May my comments, insights, and reflections regarding osteoarthritis add to, rather than detract from my primary topic--brain damage.
Subscribe to:
Posts (Atom)