*sapphoq healing tbi
Monday, September 14, 2009
Growing Back
shout outs to Dr. Holub, Peter Kahrman and his Life Growth workshops, and Vitolo Rossini
Once again, last night I found myself explaining in layperson's term basic brain factoids to a friend. She proposed the tired misinformation that "the wires of the brain grow back-- and better than ever." I explained that if there is axon shearing, the axons cannot regenerate. When the axons are not sheared, the dendrites can re-connect but there are some difficulties inherent in the process.
Using my arms to represent the axons and fingers to represent the dendrites, I demonstrated that some of the 'wires' reconnect correctly, some reconnect in the wrong places, and a few grow back but do not reconnect at all. I told her about cognitive slowing-- traveling along dirt roads rather than on the expressways. I also told her that when dendrites do not reconnect, there is the resultant central nervous system tremor (something which I myself do have). Thus, one of the side effects of healing is the presence and worsening of a symptom (the tremor) which some of us did not have before. "Well, I'm optimistic," the friend said. "I'm hopeful."
I am also hopeful. Yet my hope lays in a different direction. I am enough of a realist to know that my own brain damage (the words "brain injury" is a nicer way to describe these profound life-altering changes in brain functioning) will not revert to its' former state of affairs and be good as new. My hope is to be able to deal with what is in an effective loving manner. Of course I keep exercising my brain daily in order to access as much improvement as I can. Yet I also continue to employ workarounds for those times when my damaged brain clamps down on my ability to function.
When well-meaning people say, "Oh but the brain rewires itself," I feel discounted. That is not their intention perhaps, but that is my first reaction. When people say, "Oh but I have [insert troublesome symptom] too," I feel that my own experience with brain damage is being trivialized. There is something within us all perhaps that wishes to normalize the traumatic. It is not a kindness to paint masterpieces of normalcy with the brush strokes of my pain. Because what happened within my brain and within the brains of all survivors of brain injury, is not within the realms of average mundane existence.
I have a fairly clear picture of where my brain damage is and the resultant challenges based on medical testing. I have the results of my M.R.I. in an oversized brown envelope at home. I also have the results of my neuropsych testing done at a brain and spinal cord injury rehabilitation hospital. The M.R.I. films and the final report written by a neuropsych demonstrate in black and white the stark reality of my brain injury.
People in recovery from drug addiction (including the drug alcohol) often claim that they have brain damage in an off-handed way. Years ago, I too had also made this claim in my own ignorance. Indeed, what triggered last night's conversation was a dear friend joking about not having two brain cells left to rub together. I remember what my early recovery from the bondage of addiction was like. When comparing the state of my being then to the state of my being after my motor vehicle accident, I find a vast difference between my former unfounded claims and my present reality. Personally, I would prefer that people in recovery and others quit trying to join our ranks unless they have films and neuropsych reports to back their claims.
Brain damage is a profound alteration in functioning imposed by structural changes. The next time you run into a former co-worker at the mall who did not return to work after her accident and she tells you she has a brain injury now, please endeavor to cast aside your own denial instead of discounting the results of her professional testing. If a survivor of a traumatic brain injury shares his pain over recurring troublesome symptoms, please do not attempt to join our ranks with your claim that you "have that too." And people in recovery, please stop saying that you have damaged your brain unless you have medical evidence to back up your claims.
For myself, I strive to keep addressing my defensiveness and to provide basic brain education where possible in a caring and respectful way. Some of you may know of my involvement with the virtual world of Second Life (registered copyright of Linden Labs). I have a role model there, a young man who is himself a t.b.i. survivor. Vito also uses opportunities as they come up in his daily encounters to educate the masses. I've seen Vito in action. He has far more patience than I do when he encounters brain myths. Vito does not present as being defensive. Vito listens quietly and chooses his words carefully. His ending to every conversation is a bow and the words, "With respect."
sapphoq healing t.b.i.
Once again, last night I found myself explaining in layperson's term basic brain factoids to a friend. She proposed the tired misinformation that "the wires of the brain grow back-- and better than ever." I explained that if there is axon shearing, the axons cannot regenerate. When the axons are not sheared, the dendrites can re-connect but there are some difficulties inherent in the process.
Using my arms to represent the axons and fingers to represent the dendrites, I demonstrated that some of the 'wires' reconnect correctly, some reconnect in the wrong places, and a few grow back but do not reconnect at all. I told her about cognitive slowing-- traveling along dirt roads rather than on the expressways. I also told her that when dendrites do not reconnect, there is the resultant central nervous system tremor (something which I myself do have). Thus, one of the side effects of healing is the presence and worsening of a symptom (the tremor) which some of us did not have before. "Well, I'm optimistic," the friend said. "I'm hopeful."
I am also hopeful. Yet my hope lays in a different direction. I am enough of a realist to know that my own brain damage (the words "brain injury" is a nicer way to describe these profound life-altering changes in brain functioning) will not revert to its' former state of affairs and be good as new. My hope is to be able to deal with what is in an effective loving manner. Of course I keep exercising my brain daily in order to access as much improvement as I can. Yet I also continue to employ workarounds for those times when my damaged brain clamps down on my ability to function.
When well-meaning people say, "Oh but the brain rewires itself," I feel discounted. That is not their intention perhaps, but that is my first reaction. When people say, "Oh but I have [insert troublesome symptom] too," I feel that my own experience with brain damage is being trivialized. There is something within us all perhaps that wishes to normalize the traumatic. It is not a kindness to paint masterpieces of normalcy with the brush strokes of my pain. Because what happened within my brain and within the brains of all survivors of brain injury, is not within the realms of average mundane existence.
I have a fairly clear picture of where my brain damage is and the resultant challenges based on medical testing. I have the results of my M.R.I. in an oversized brown envelope at home. I also have the results of my neuropsych testing done at a brain and spinal cord injury rehabilitation hospital. The M.R.I. films and the final report written by a neuropsych demonstrate in black and white the stark reality of my brain injury.
People in recovery from drug addiction (including the drug alcohol) often claim that they have brain damage in an off-handed way. Years ago, I too had also made this claim in my own ignorance. Indeed, what triggered last night's conversation was a dear friend joking about not having two brain cells left to rub together. I remember what my early recovery from the bondage of addiction was like. When comparing the state of my being then to the state of my being after my motor vehicle accident, I find a vast difference between my former unfounded claims and my present reality. Personally, I would prefer that people in recovery and others quit trying to join our ranks unless they have films and neuropsych reports to back their claims.
Brain damage is a profound alteration in functioning imposed by structural changes. The next time you run into a former co-worker at the mall who did not return to work after her accident and she tells you she has a brain injury now, please endeavor to cast aside your own denial instead of discounting the results of her professional testing. If a survivor of a traumatic brain injury shares his pain over recurring troublesome symptoms, please do not attempt to join our ranks with your claim that you "have that too." And people in recovery, please stop saying that you have damaged your brain unless you have medical evidence to back up your claims.
For myself, I strive to keep addressing my defensiveness and to provide basic brain education where possible in a caring and respectful way. Some of you may know of my involvement with the virtual world of Second Life (registered copyright of Linden Labs). I have a role model there, a young man who is himself a t.b.i. survivor. Vito also uses opportunities as they come up in his daily encounters to educate the masses. I've seen Vito in action. He has far more patience than I do when he encounters brain myths. Vito does not present as being defensive. Vito listens quietly and chooses his words carefully. His ending to every conversation is a bow and the words, "With respect."
sapphoq healing t.b.i.
Labels: acquired brain injury, brain, brain+damage, t.b.i., traumatic+brain+injury
¶ 4:58 AM 0 comments links to this post
Monday, July 07, 2008
Kristen Furseth-Mullaney's triumph
http://www.freep.com/apps/pbcs.dll/article?AID=/20080706/SPORTS17/807060590/1065
A big shout-out to Kristen Furseth-Mullaney who is vying for a spot at the Olympics as a racewalker for the United States. She hails from Okemos, Michigan. Furseth-Mullaney suffered a traumatic brain injury in 2006 when she was hit by a car while biking in the Caribbean. After having to relearn how to walk, she began her athletic comeback in the water and gradually was able to swim laps. She wanted to run but the docs nixed that idea. They did allow her to try race-walking and so she did. The mother of two has left frontal lobe damage but that did not stop her from setting goals and achieving them. The most recent m.r.i. shows the possibility of a brain tumor and she is also now diagnosed with adrenal insufficiency. My baseball cap off to a woman who did not let traumatic brain injury stop her from pursuing a dream.
sapphoq healing t.b.i.
A big shout-out to Kristen Furseth-Mullaney who is vying for a spot at the Olympics as a racewalker for the United States. She hails from Okemos, Michigan. Furseth-Mullaney suffered a traumatic brain injury in 2006 when she was hit by a car while biking in the Caribbean. After having to relearn how to walk, she began her athletic comeback in the water and gradually was able to swim laps. She wanted to run but the docs nixed that idea. They did allow her to try race-walking and so she did. The mother of two has left frontal lobe damage but that did not stop her from setting goals and achieving them. The most recent m.r.i. shows the possibility of a brain tumor and she is also now diagnosed with adrenal insufficiency. My baseball cap off to a woman who did not let traumatic brain injury stop her from pursuing a dream.
sapphoq healing t.b.i.
Labels: a.b.i., acquired brain injury, brain-tumored, goals, t.b.i., tbi
¶ 10:01 PM 0 comments links to this post
Wednesday, December 26, 2007
Brain Injuries and P.T.S.D. 12/25/07
Several articles have cropped up declaring that brain injuries "cure" Post Traumatic Stress Disorder. In reading through them, I found that what they meant to say is that brain injuries demonstrated in either of two specific areas of the brains of research subjects lessen the incidence of P.T.S.D. The two areas are the amygdala and the vmPFC or the ventromedial prefrontal cortex. The research results reported are actually fairly impressive. Folks with insults to the amygdala had zero incidence of P.T.S.D. And only 18% of folks with insults to the vmPFC developed P.T.S.D.
No one is planning to go out and deliberately inflict brain injuries upon those with P.T.S.D. The idea of surgery to insert clips to dull activity in one or both areas is rather uninviting. Use of magnetic stuff is more palatable but also more suspect as junk science.
Nothing reported over on Medscape yet so it is too early for me to get excited.
sapphoq healing t.b.i.
http://www.washingtonpost.com/wp-dyn/content/article/2007/12/23/AR2007122300601.html
http://www.sciencedaily.com/releases/2007/12/071224124639.htm
http://timesofindia.indiatimes.com/Brain_injury_may_be_a_cure_for_PTSD/
articleshow/2647593.cms
http://www.guardian.co.uk/science/2007/dec/24/medicalresearch.neuroscience
No one is planning to go out and deliberately inflict brain injuries upon those with P.T.S.D. The idea of surgery to insert clips to dull activity in one or both areas is rather uninviting. Use of magnetic stuff is more palatable but also more suspect as junk science.
Nothing reported over on Medscape yet so it is too early for me to get excited.
sapphoq healing t.b.i.
http://www.washingtonpost.com/wp-dyn/content/article/2007/12/23/AR2007122300601.html
http://www.sciencedaily.com/releases/2007/12/071224124639.htm
http://timesofindia.indiatimes.com/Brain_injury_may_be_a_cure_for_PTSD/
articleshow/2647593.cms
http://www.guardian.co.uk/science/2007/dec/24/medicalresearch.neuroscience
Labels: a.b.i., acquired brain injury, p.t.s.d., t.b.i., tbi, traumatic+brain+injury, treatment
¶ 12:22 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
Thursday, May 17, 2007
INSTITUTIONALIZATION VS. REHABILITATION 5/17/07
In the state that is dieing to pay for almost everyone's health problems, it was interesting to note that some folks with brain injuries are crying "foul." The dirty little secret of nursing homes everywhere is that in the bid for dwindling funds, they have become repositories for folks with brain injuries [both acquired and traumatic], folks found to be mentally ill, folks unable to go home immediately after hospitalization but not sick enough to take up hospital beds and so forth. Anyone who has had direct experience with a loved one in a coma being shipped off to a nursing home [uh, thanks managed care and health mediphorical discintegrarganizations] is familiar with exactly what kind of "rehabilitation" such places offer. It is about time that folks with brain injuries stuck in nursing homes raise their voices in protest. Apparently, Massachusetts provides some services for some folks with t.b.i. but has ignored those folks with strokes and other acquired brain injuries by shutting them away in nursing homes.
Community living with natural supports is much preferred for any civil [civil= human being who is not a law-breaker, able to live in society without being a threat to that society] over institutionalization. Group homes are far down on the list of preferences, yet congregate living is still better than existence in a nursing home. The ideal is for folks with any disability to be able to choose where they will live and then given the means to utilize the [hopefully natural] supports needed to be successful. No doubt, most folks want to be in their own home surrounded by their loved ones. Some may wish to live in an apartment with or without a roommate or two. [N.B. Keeping one of us in a nursing home is far more expensive than allowing us to have a true say in our lives].
To those of you who talk about "special needs," we do not have "special needs." We have the same needs that you do. We have the same needs for self-determination, love, friendships, communications, mobility, sexual expression, productivity, societal roles, a space to call our own, and community participation that you have. Get a clue people. By calling our needs "special," you divorce yourselves from our humanity. Are you afraid that you will wind up like us? We are not contagious. [Wait. Maybe I am. Two of my friends came down with traumatic brain injury after I did]. I remember a woman boarding a bus in Phoenix. I was attempting to get my fare out to put it in the little fare grabbing machine which was new to me. She appeared to be afraid of my walking stick. Or maybe it was what the walking stick represented. Or maybe that somehow I was going to leap off of the bus and steal her bicycle on the rack outside in front of the bus. I dunno. Fear this. Fear a bunch of us united together in our anger and strength determined not to be locked away in nursing homes.
In this society, those of us who become disabled quickly find out what it is like to be a second-class citizen. Some surrender to despair, some ignore the situation, and the rest of us get angry and politically active through organizations like A.D.A.P.T. My sincere hope is that Massachusetts will choose to spend healthcare dollars on her disabled citizens stuck in nursing homes rather than continue to spend them on those pesky illegal aliens who are snapping up construction jobs [and cluttering up emergency rooms] all over the country.
sapphoq healing t.b.i.
In the state that is dieing to pay for almost everyone's health problems, it was interesting to note that some folks with brain injuries are crying "foul." The dirty little secret of nursing homes everywhere is that in the bid for dwindling funds, they have become repositories for folks with brain injuries [both acquired and traumatic], folks found to be mentally ill, folks unable to go home immediately after hospitalization but not sick enough to take up hospital beds and so forth. Anyone who has had direct experience with a loved one in a coma being shipped off to a nursing home [uh, thanks managed care and health mediphorical discintegrarganizations] is familiar with exactly what kind of "rehabilitation" such places offer. It is about time that folks with brain injuries stuck in nursing homes raise their voices in protest. Apparently, Massachusetts provides some services for some folks with t.b.i. but has ignored those folks with strokes and other acquired brain injuries by shutting them away in nursing homes.
Community living with natural supports is much preferred for any civil [civil= human being who is not a law-breaker, able to live in society without being a threat to that society] over institutionalization. Group homes are far down on the list of preferences, yet congregate living is still better than existence in a nursing home. The ideal is for folks with any disability to be able to choose where they will live and then given the means to utilize the [hopefully natural] supports needed to be successful. No doubt, most folks want to be in their own home surrounded by their loved ones. Some may wish to live in an apartment with or without a roommate or two. [N.B. Keeping one of us in a nursing home is far more expensive than allowing us to have a true say in our lives].
To those of you who talk about "special needs," we do not have "special needs." We have the same needs that you do. We have the same needs for self-determination, love, friendships, communications, mobility, sexual expression, productivity, societal roles, a space to call our own, and community participation that you have. Get a clue people. By calling our needs "special," you divorce yourselves from our humanity. Are you afraid that you will wind up like us? We are not contagious. [Wait. Maybe I am. Two of my friends came down with traumatic brain injury after I did]. I remember a woman boarding a bus in Phoenix. I was attempting to get my fare out to put it in the little fare grabbing machine which was new to me. She appeared to be afraid of my walking stick. Or maybe it was what the walking stick represented. Or maybe that somehow I was going to leap off of the bus and steal her bicycle on the rack outside in front of the bus. I dunno. Fear this. Fear a bunch of us united together in our anger and strength determined not to be locked away in nursing homes.
In this society, those of us who become disabled quickly find out what it is like to be a second-class citizen. Some surrender to despair, some ignore the situation, and the rest of us get angry and politically active through organizations like A.D.A.P.T. My sincere hope is that Massachusetts will choose to spend healthcare dollars on her disabled citizens stuck in nursing homes rather than continue to spend them on those pesky illegal aliens who are snapping up construction jobs [and cluttering up emergency rooms] all over the country.
sapphoq healing t.b.i.
Labels: a.b.i., A.D.A.P.T., acquired brain injury, community living, institutionalization, nursing homes, rehabilitation, special needs, t.b.i., tbi, traumatic+brain+injury
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