*sapphoq healing tbi
Wednesday, May 28, 2008
Stuff that annoys me, stuff I am happy about
A list in no particular order inspired by a blogger who wrote a list of how to annoy an aspie. Unfortunately, I can't find the link to that particular post at the moment. When/if I do, I will add it.
If you have a brain injury and not all of the stuff on my list annoys you, that is okay.
Write your own wish if you want to.
If you don't have a brain injury and not all of the stuff/most of the stuff on my list annoys you, that is probably okay. Write your own. I don't have the monopoly on being annoyed and some of the stuff mentioned here is not specific to folks with disabilities.
So here goes:
1. "Oh yeah, I have that too." Unless you also have atypical neurology, NO YOU DON'T.
2. Repetitive forms.
3. Too loud, too bright, too scratchy.
4. The world requires multi-tasking for almost everything. My ability to multi-task has shit the bed and ain't coming back.
5. Cognitive art therapists who claim to have degrees from "schools" which are suspected of being diploma mills and reported as such when Googled.
6. Anyone who insists that said cognitive art therapists are loved by gazillions of fans. That whole being loved thing is the emotional stance of infants.
7. Medical doctors who do not listen.
8. Expressive aphasia sucks.
9. "You are a person WITH a traumatic brain injury." No asshole, I have a t.b.i.
10. Referring to t.b.i.-ers or survivors of t.b.i. as t.b.i.s. Uh, hello. We are not our labels. We are not alcoholism, broken legs, or brain injuries. [See number nine.]
11. VESID. VESID sucks. [VESID is called o.v.r. in other states.] And by the way any vocational rehabilitation counselors who may have stumbled across this post, disabled people do NOT spend all of their time home watching television. Even people with developmental disabilities do NOT spend all of their free time home watching television. Your sheltered workshops are a modern form of slave labor and an abomination.
12. Being talked down to by professional "helpers" who don't help.
13. Dealing with the mail order pharmacy.
14. Fatigue.
15. A body that does not bend due to neurology.
16. Inadequate pain management.
17. "The brain rewires itself." Yep, it does. The result is a dirt road where high speed freeways used to exist. And when the neurons don't connect up correctly, say hello to permanent central nervous system tremor.
18. There is a reason why I am not working. Not working does NOT obligate me to be your fetch and step. If I felt well enough to do you all those favors you seem to think I am capable of doing for you, I would be working. So bugger off.
19. Perception problems and visual disturbances getting in the way of a variety of activities.
20. Happy happy joy joy 12 step people who assure me that their g-d wanted this to happen to me as part of some masterful plan. Please take your mental masturbations elsewhere. I have enough of my own.
21. Automatic assumptions that my anger is somehow bad or dysfunction and needs healing. When I want your opinion, I will ask you. And besides, you are not my shrink.
22. Unclear directions.
23. Not enough help to do the things that I can no longer do.
24. A-motivational syndrome-- mine.
25. A social security disability system which denies disability to those of us who have worked all of our adult lives and now can't as well as to people who are on chemo for crying out loud. Along with worker's comp and "no fault" [we ain't paying cuz it ain't our fault] auto insurance companies, health maintenance organizations, and in laws.
***
Stuff I am happy about: being alive, being abstinent, my friends, my family, my dog, my cats, my frogs, the stuff inside of me that enables me to keep striving.
sapphoq healing t.b.i.
If you have a brain injury and not all of the stuff on my list annoys you, that is okay.
Write your own wish if you want to.
If you don't have a brain injury and not all of the stuff/most of the stuff on my list annoys you, that is probably okay. Write your own. I don't have the monopoly on being annoyed and some of the stuff mentioned here is not specific to folks with disabilities.
So here goes:
1. "Oh yeah, I have that too." Unless you also have atypical neurology, NO YOU DON'T.
2. Repetitive forms.
3. Too loud, too bright, too scratchy.
4. The world requires multi-tasking for almost everything. My ability to multi-task has shit the bed and ain't coming back.
5. Cognitive art therapists who claim to have degrees from "schools" which are suspected of being diploma mills and reported as such when Googled.
6. Anyone who insists that said cognitive art therapists are loved by gazillions of fans. That whole being loved thing is the emotional stance of infants.
7. Medical doctors who do not listen.
8. Expressive aphasia sucks.
9. "You are a person WITH a traumatic brain injury." No asshole, I have a t.b.i.
10. Referring to t.b.i.-ers or survivors of t.b.i. as t.b.i.s. Uh, hello. We are not our labels. We are not alcoholism, broken legs, or brain injuries. [See number nine.]
11. VESID. VESID sucks. [VESID is called o.v.r. in other states.] And by the way any vocational rehabilitation counselors who may have stumbled across this post, disabled people do NOT spend all of their time home watching television. Even people with developmental disabilities do NOT spend all of their free time home watching television. Your sheltered workshops are a modern form of slave labor and an abomination.
12. Being talked down to by professional "helpers" who don't help.
13. Dealing with the mail order pharmacy.
14. Fatigue.
15. A body that does not bend due to neurology.
16. Inadequate pain management.
17. "The brain rewires itself." Yep, it does. The result is a dirt road where high speed freeways used to exist. And when the neurons don't connect up correctly, say hello to permanent central nervous system tremor.
18. There is a reason why I am not working. Not working does NOT obligate me to be your fetch and step. If I felt well enough to do you all those favors you seem to think I am capable of doing for you, I would be working. So bugger off.
19. Perception problems and visual disturbances getting in the way of a variety of activities.
20. Happy happy joy joy 12 step people who assure me that their g-d wanted this to happen to me as part of some masterful plan. Please take your mental masturbations elsewhere. I have enough of my own.
21. Automatic assumptions that my anger is somehow bad or dysfunction and needs healing. When I want your opinion, I will ask you. And besides, you are not my shrink.
22. Unclear directions.
23. Not enough help to do the things that I can no longer do.
24. A-motivational syndrome-- mine.
25. A social security disability system which denies disability to those of us who have worked all of our adult lives and now can't as well as to people who are on chemo for crying out loud. Along with worker's comp and "no fault" [we ain't paying cuz it ain't our fault] auto insurance companies, health maintenance organizations, and in laws.
***
Stuff I am happy about: being alive, being abstinent, my friends, my family, my dog, my cats, my frogs, the stuff inside of me that enables me to keep striving.
sapphoq healing t.b.i.
Labels: a.b.i., accessibility, acquired+brain+injury, tbi, traumatic+brain+injury
¶ 2:45 AM 0 comments links to this post
Tuesday, October 09, 2007
A QUESTIONNAIRE
The wonderful folks at Medscape bring an article detailing a questionnaire which NCNeuropsychiatry P.A. has made available on-line to medical personnel which their patients and/or family members can take. It has 207 questions which are correlated to groups of symptoms and specific conditions indicated by them.
The questionnaire is notable for traumatic brain injury patients because it includes a short test for problems related to concussion. Results below for a fictitious patient who presents with moderate disability from a traumatic brain injury have been directed pasted from the test site:
*****************************************************************************
SYMPTOM SCALE
CONDITIONAL SCALE
[end of cut and paste from site]
********************************************************************
It is noted that report of symptoms does not indicate that the patient has or doesn't have any of the conditions associated with them. Some patients may over-report symptoms and some others may under-report. The test results of the fictitious patient above may indicate perception of mild problems with attention, mood stability, fatigue, and sleep. The symptom clusters aggregate into a possible clinical picture of the presence of post-concussion difficulties as well as mild autism and Asperger's. An experienced qualified clinician can utilize the testing results in fact gathering and diagnostic interviewing. Because the patient can re-take the test throughout treatment as well as at termination, there is a direct way to measure any progress in reduction of symptomology.
NC Neuropsychiatry P.A. offers evaluation, treatment, and medication management for those people who have symptoms of a variety of disorders including but not limited to serious psychiatric conditions, learning disabilities, cognitive impairments, A.D.D. ad A.D.H.D., and broad autism spectrum disorders as well as traumatic brain injuries. Clinicians are researchers as well as qualified specialists and the practice also offers clinical trials.
The website itself is easy to read and easy to navigate. From the well-written section on traumatic brain injury, I found that traumatic brain injury is one subset of acquired brain injuries. The practice also offers for purchase a series of tests which measure things like working memory, ability to shift tasks, and flexibility in cognitive tasks. The tests may also be accessed from a computer [the clinician can download a complete battery] and norms are included. The series of tests together is referred to as the CNS Vital Signs Assessment Battery. The things that the tests propose to measure have implications for traumatic brain injury patients and for those with mild cognitive impairments, A.D.H.D., and stroke.
The subject of words, definitions, and labels has recently come up in two e-lists I belong to which deal with brain injuries. One of the ideas that was expressed was that researchers are only in it to "make a name" for themselves thus they have a vested interest in the nomenclature associated with brain injury.
From my own perspective, it is vitally important to recognize the medical terminology associated with brain injuries. Common civilian words that are used to describe brain injuries and the effects of are not adequate when reading peer-review research studies. The N.C. Neuropsychiatry P.A. website illustrates the commitment of the researchers associated with that practice. Doctor Johnson has a long list of publication credits and Doctor Gaultieri's is even longer.
Researchers do not work in ivory towers. With the increasing religiosity inherent in the U.S.A. government decisions of who gets what funding as well as competition for research dollars, researchers by and large do have to possess a commitment to the subject of their research as well as to displaying verifiable results.
I encourage anyone reading this who is a medical consumer with a specific chronic condition or disorder to familiarize yourselve with medical terms and research protocols. Medicine continues to advance at a rapid pace. We can become our own best advocates if we are willing and able to gather information in order to communicate intelligently with the professional helpers on our medical teams.
Financial Disclosure: sapphoq has never been a patient at N.C. Neuropsychiatry P.A. located somewhere or other in North Carolina. Neither they nor Medscape paid sapphoq for the nice things she said about them. Thank-you.
sapphoq healing traumatic brain injury
traumatic brain injury
symptom scale
N.C. Neuropsychiatry P.A.
cognitive testing
The questionnaire is notable for traumatic brain injury patients because it includes a short test for problems related to concussion. Results below for a fictitious patient who presents with moderate disability from a traumatic brain injury have been directed pasted from the test site:
*****************************************************************************
********************************************************************
It is noted that report of symptoms does not indicate that the patient has or doesn't have any of the conditions associated with them. Some patients may over-report symptoms and some others may under-report. The test results of the fictitious patient above may indicate perception of mild problems with attention, mood stability, fatigue, and sleep. The symptom clusters aggregate into a possible clinical picture of the presence of post-concussion difficulties as well as mild autism and Asperger's. An experienced qualified clinician can utilize the testing results in fact gathering and diagnostic interviewing. Because the patient can re-take the test throughout treatment as well as at termination, there is a direct way to measure any progress in reduction of symptomology.
NC Neuropsychiatry P.A. offers evaluation, treatment, and medication management for those people who have symptoms of a variety of disorders including but not limited to serious psychiatric conditions, learning disabilities, cognitive impairments, A.D.D. ad A.D.H.D., and broad autism spectrum disorders as well as traumatic brain injuries. Clinicians are researchers as well as qualified specialists and the practice also offers clinical trials.
The website itself is easy to read and easy to navigate. From the well-written section on traumatic brain injury, I found that traumatic brain injury is one subset of acquired brain injuries. The practice also offers for purchase a series of tests which measure things like working memory, ability to shift tasks, and flexibility in cognitive tasks. The tests may also be accessed from a computer [the clinician can download a complete battery] and norms are included. The series of tests together is referred to as the CNS Vital Signs Assessment Battery. The things that the tests propose to measure have implications for traumatic brain injury patients and for those with mild cognitive impairments, A.D.H.D., and stroke.
The subject of words, definitions, and labels has recently come up in two e-lists I belong to which deal with brain injuries. One of the ideas that was expressed was that researchers are only in it to "make a name" for themselves thus they have a vested interest in the nomenclature associated with brain injury.
From my own perspective, it is vitally important to recognize the medical terminology associated with brain injuries. Common civilian words that are used to describe brain injuries and the effects of are not adequate when reading peer-review research studies. The N.C. Neuropsychiatry P.A. website illustrates the commitment of the researchers associated with that practice. Doctor Johnson has a long list of publication credits and Doctor Gaultieri's is even longer.
Researchers do not work in ivory towers. With the increasing religiosity inherent in the U.S.A. government decisions of who gets what funding as well as competition for research dollars, researchers by and large do have to possess a commitment to the subject of their research as well as to displaying verifiable results.
I encourage anyone reading this who is a medical consumer with a specific chronic condition or disorder to familiarize yourselve with medical terms and research protocols. Medicine continues to advance at a rapid pace. We can become our own best advocates if we are willing and able to gather information in order to communicate intelligently with the professional helpers on our medical teams.
Financial Disclosure: sapphoq has never been a patient at N.C. Neuropsychiatry P.A. located somewhere or other in North Carolina. Neither they nor Medscape paid sapphoq for the nice things she said about them. Thank-you.
sapphoq healing traumatic brain injurytraumatic brain injurysymptom scaleN.C. Neuropsychiatry P.A.cognitive testingLabels: A.D.D./A.D.H.D., acquired brain injury, acquired+brain+injury, Medscape, N.C. Neuropsychiatry P.A., N.P.Q., nomeclature, peer-review, questionnaire, research, t.b.i., tbi, traumatic+brain+injury
¶ 8:04 PM 0 comments links to this post
Friday, June 29, 2007
Letters to My Self *suicide, trigger*
Forgive me, if you will, my familiarity. I have known you for your whole life, although--like one in the deepest of comas-- you have consistently failed to recognize me. I am skin of your skin, blood of your blood, your breath, your everything. And you are mine.
You say you are endeavoring to fit your life together like a puzzle. Yet the puzzle has no pieces and nothing can be glued together. Stop that.
Here is something for you that you can do. Throw out those old puzzle boxes. Your life is an intricate weaving together of diverse elements into patterns. Patterns that defy the status quo. You are you.
You are not your labels, problems, disabilities. You are you and only you. There is no path for you to be on. You are a trailblazer who has been growing new legs. Get up now and walk on those legs, receiving the strength that is yours and yours alone. Then go out and share that strength. Only in the interconnection of all life will you ever find happiness.
Love Always,
All That Is
Dear "All That Is,"
What kind of stupid-ass name is that? I don't much like you. You and your talk about interconnections and weavings and patterns.
I have suicidal thoughts. They are my Plan B. Plan B is persistent and seductive in her constant whisperings. Plan B says,
"You won't find any jobs. Look, see there are no state jobs waiting for you in the wings. You are
scheduled to language away trying to catch up to the grindstone. There is poverty and degradation .
I'm a secret Plan B. You mustn't tell. Anyone."
You try living with Plan B, always there in the background with her twirly sheer skirts and flirty ways. It's not easy to be me and I may die. Still, it is a lot better than being you. You pompous assinine zipperhead. And by the way, I am no one's "heartlove."
In Total Apathy,
spike
Dear Heartlove,
"I always have options. I just don't always know what they are." Didn't you used to say that?
Love,
All That Is
Dear Pompous One,
Bugger off.
spike
Dear Plan B,
You are not a real Plan B. I name you Imposter. You are a collection of lies and old tapes. I repudiate you.
I may not know where I am going. I do know that I will make it through this.
You can bugger off too, along with that "All There Is" Pompous Asshole.
Basta,
spike
Forgive me, if you will, my familiarity. I have known you for your whole life, although--like one in the deepest of comas-- you have consistently failed to recognize me. I am skin of your skin, blood of your blood, your breath, your everything. And you are mine.
You say you are endeavoring to fit your life together like a puzzle. Yet the puzzle has no pieces and nothing can be glued together. Stop that.
Here is something for you that you can do. Throw out those old puzzle boxes. Your life is an intricate weaving together of diverse elements into patterns. Patterns that defy the status quo. You are you.
You are not your labels, problems, disabilities. You are you and only you. There is no path for you to be on. You are a trailblazer who has been growing new legs. Get up now and walk on those legs, receiving the strength that is yours and yours alone. Then go out and share that strength. Only in the interconnection of all life will you ever find happiness.
Love Always,
All That Is
Dear "All That Is,"
What kind of stupid-ass name is that? I don't much like you. You and your talk about interconnections and weavings and patterns.
I have suicidal thoughts. They are my Plan B. Plan B is persistent and seductive in her constant whisperings. Plan B says,
"You won't find any jobs. Look, see there are no state jobs waiting for you in the wings. You are
scheduled to language away trying to catch up to the grindstone. There is poverty and degradation .
I'm a secret Plan B. You mustn't tell. Anyone."
You try living with Plan B, always there in the background with her twirly sheer skirts and flirty ways. It's not easy to be me and I may die. Still, it is a lot better than being you. You pompous assinine zipperhead. And by the way, I am no one's "heartlove."
In Total Apathy,
spike
Dear Heartlove,
"I always have options. I just don't always know what they are." Didn't you used to say that?
Love,
All That Is
Dear Pompous One,
Bugger off.
spike
Dear Plan B,
You are not a real Plan B. I name you Imposter. You are a collection of lies and old tapes. I repudiate you.
I may not know where I am going. I do know that I will make it through this.
You can bugger off too, along with that "All There Is" Pompous Asshole.
Basta,
spike
Labels: a.b.i., acquired brain injury, acquired+brain+injury, employment, suicidal thoughts, t.b.i., traumatic+brain+injury
¶ 2:23 PM 0 comments links to this post
Monday, June 25, 2007
Excuses, excuses, excuses
Anthony O'Toole told the court that an old head injury [not several pints of alcohol] caused him to have seizure activity which necessitated the calling of an ambulance and himself being intubated in order to maintain airflow. The stupid judge bought that story. The cop who arrested him for public intoxication apparently knew better.
To those of us who have a traumatic brain injury or any other disability or belong to any minority group-- the way to acquire equal protection under the law is through taking equal responsibility [i.e. the same responsibility that everyone else takes] for our bad behavior. We have choices and we can choose to lie about what we do or to face the consequences just like everybody else. Until we learn to quit using our otherness as an excuse, we have virtually no recourse in the dialogue for equal rights, period. Get a clue. Anything worth having is worth working for. If we want equal rights, then let's start taking equal responsibility.
Dude was drunk in public. Dude claims his seizures were from a head injury. That is possible. However, folks with traumatic brain injuries [even those without an addiction problem] should not drink or use street drugs at all. For a doctor not to know enough to access someone with a brain injury is negligence in my book. For a doctor not to know enough to advise that we should not drink or use street drugs at all is criminal.
Here's the link.
sapphoq healing tbi
To those of us who have a traumatic brain injury or any other disability or belong to any minority group-- the way to acquire equal protection under the law is through taking equal responsibility [i.e. the same responsibility that everyone else takes] for our bad behavior. We have choices and we can choose to lie about what we do or to face the consequences just like everybody else. Until we learn to quit using our otherness as an excuse, we have virtually no recourse in the dialogue for equal rights, period. Get a clue. Anything worth having is worth working for. If we want equal rights, then let's start taking equal responsibility.
Dude was drunk in public. Dude claims his seizures were from a head injury. That is possible. However, folks with traumatic brain injuries [even those without an addiction problem] should not drink or use street drugs at all. For a doctor not to know enough to access someone with a brain injury is negligence in my book. For a doctor not to know enough to advise that we should not drink or use street drugs at all is criminal.
Here's the link.
sapphoq healing tbi
Labels: a.b.i., acquired brain injury, acquired+brain+injury, excuses, responsibility, t.b.i., tbi, traumatic+brain+injury
¶ 10:20 PM 0 comments links to this post
Monday, February 05, 2007
MACULAR DEGENRATION MEDICATION AND RISK OF STROKE IN OLDER PATIENTS 2/5/07
http://www.medscape.com/viewarticle/551479
A medication called Lucentis (ranibizumab) has been tentatively linked to an increased risk of stroke in older patients in an ongoing study designed to test its' safety. Lucentis is prescribed for patients who have the wet form (neovascular) of Age-related Macular Degeneration (A.M.D.). The pharmaceutical company Genentech sent a warning letter to physicians on approximately January 23rd.
In the study, patients who got the recommended dose of ranibizumab were at increased risk for stroke over patients who got a lower dose. Patients who have a history of stroke were also at increased risk for having a second stroke. There was no increase in stroke-related deaths.
Age-Related Macular Degeneration is a disease of the retina. It is the leading cause of vision loss in the elderly. It is progressive. It comes in two forms-- dry, and wet. The dry form can shift over into the wet form which is thought to be the more troublesome of the two. Although a thorough eye examinations including dilation is not prioritized by adults aged 50 and over, there are advances in treatment for A.M.D. and hopefully at least one of them will not care the increased risk for stroke.
sapphoq healing t.b.i. and a.b.i.
A medication called Lucentis (ranibizumab) has been tentatively linked to an increased risk of stroke in older patients in an ongoing study designed to test its' safety. Lucentis is prescribed for patients who have the wet form (neovascular) of Age-related Macular Degeneration (A.M.D.). The pharmaceutical company Genentech sent a warning letter to physicians on approximately January 23rd.
In the study, patients who got the recommended dose of ranibizumab were at increased risk for stroke over patients who got a lower dose. Patients who have a history of stroke were also at increased risk for having a second stroke. There was no increase in stroke-related deaths.
Age-Related Macular Degeneration is a disease of the retina. It is the leading cause of vision loss in the elderly. It is progressive. It comes in two forms-- dry, and wet. The dry form can shift over into the wet form which is thought to be the more troublesome of the two. Although a thorough eye examinations including dilation is not prioritized by adults aged 50 and over, there are advances in treatment for A.M.D. and hopefully at least one of them will not care the increased risk for stroke.
sapphoq healing t.b.i. and a.b.i.
Labels: a.b.i., A.M.D., acquired+brain+injury, Age-Related+Macular+Degeneration, cerebral+vascular+ accident, Genentech, Lucentis, ranibizumab, retinal, stroke
¶ 7:42 PM 0 comments links to this post
