august 2006- the good, the bad, the ugly
The good, the bad and the ugly – best title for latest update re: my recovery and I’ll ad the subheading of the words of the immortal Hunter S. Thompson “It still hasn’t gotten weird enough for me yet…”
The good: My physical and cognitive progress has continued to a point where I am well enough to be driving myself in to work at Convio Tuesdays and Thursdays, running up to 3miles a couple of days a week – and even well enough to fly to New York to attend an industry trade show [CASE conference] where I represented the firm at a booth in the exhibit hall. Was well enough (or so I thought) to extend the trip for some rest and relaxation in Cambridge and Rhode Island.
The bad: on the ride back from Horseneck beach (about an hour south of boston ) to sister sheila’s house in Rhode Island. I fell ill. Thinking I was simply tired or had gotten too much sun at the beach and just needed a nap, I fell asleep in the back seat of van being driven by my mom. Only a few miles from my sister’s home in Bristol, mom noticed that my arms and legs appeared to be flailing. When she pulled to the side of the road and got a closer look, she (correctly) deduced that I was in the midst of a seizure. Nephew Jimmy who was on the ride, called ambulance and I was transported to emergency room at Rhode Island hospital. Examination and review of history including recent stroke by team of neurologist confirmed suspicion that I had experienced a seizure. Many theories were offered as to cause and prognosis, but consensus is the seizure is part of the “normal” course of recovery process from stroke – though recent factors of stress of return to work , travel, disruption to sleep, diet and a few missed doses of my many medications obviously pushed me over an edge that made a possibility an inevitability. In laymen’s terms –seizure during stroke recovery is common because some cells within the areas where damage from stroke occurred are still functional and as motor and cognitive recovery progresses the increased activity in these damaged areas creates electro-chemical activity that runs afoul as it hits the wall of scar tissue along previously functional pathways. These irregular, dysfunctional charges ignite adjacent “kindling” [other irregular neuro chemical activity] creating a circuit overload that results in a seizure essentially a brain cramp in which brain is generating more current than it can channel – aside from the obvious physical risks of falling or biting one’s tongue during seizure is the potential damage to cells in areas in which the seizure originates potential damage will vary depending upon intensity and duration of episode. Prognosis and treatment? Well I’m on my second phase of medications to reduce risk of a repeat seizure: started with dilantin now on keppra a less invasive ant-seizure med and the hope is that this will prevent another episode and that brain will resolve the issue by developing healthy, functional pathways for increased neuro chemical activity that accompanies increased motor and cognitive functions. Tricky phase will be weaning me off the ant-seizure meds and don’t yet know the timing and decision points for that section of the course. The motive for getting off the anti-seizure meds is that the side effects: fatigue, diminished attention and processing speed- because they work by chemically suppressing brain’s neuro- transmitting process. For those of you who’ve been following my medications closely, you may recall that I am also taking drug called baclofen that operates in similar fashion to treat muscle cramping by chemically inhibiting spinal receptors from processing errant/excess signals from brain. So the seizure was somewhat foreshadowed by issue I’ve been having with abnormal brain signal from right side of brain resulting in too much “tone” in muscles on my left side. Are you all getting this? I’m sorry for the length and complexity of the details, but I know that many of you are worried and so want to provide information as best I can to help you understand how and why I will continue to heal ok?
Ok..and now for the ugly. In the midst of all this medical drama at the insistence of my disability insurance carrier, I was “coaxed” with thinly veiled threats of possible ineligibility or disqualification from the disability benefits I am receiving through my employer’s private disability insurance policy -which pays me a reasonable % of my former salary if a medical episode prevents me from fulfilling obligations of my job and or performing at the level of ability I enjoyed prior to injury – great coverage if you can get it but gets pretty testy… as they’re now on the hook for serious$$ if I don’t recover fully- so their interest in having me apply for SSA disability is based on an absurd and grossly self-interested hope that I might qualify for SSA disability benefit- so that they can reduce the amount they pay me by whatever amount I might be able to draw from social security. Here’s where and how it goes from weird to possibly really ugly: after numerous calls to follow up on the status of my application to social security, I received notification that a medical board had reviewed my application and made the determination that the extent my injuries constituted enough disability to be eligible for social security disability benefits – in spite of the fact that I have been discharged from two rehabilitation programs based on extent of progress and recovery and that I was able to exercise vigorously every day, drive and have returned to work two days a week. So off I go for an appointment with a disability benefits representative to discuss distribution of the benefit to which I am now amazingly enough entitled. On the eve of the meeting with the feds, I thought I ought to make absolutely certain that I was not committing fraud by not disclosing to SSA that since submitting my application I had returned to part time work and was now earning some pay from my previous employer. Of course, to cover all my bases I also faxed a letter to my insurance carrier informing them of finding by SSA that I was entitled to benefit and my concern that I was under the circumstances obliged to disclose to SSA tat I was now earning pay through part –time work asking that they notify me ASAP if they did NOT want me to disclose this detail to the federal agency with whom I was meeting to discuss process of collecting benefit to which they had found me entitled. Must admit I did derive some degree of satisfaction forcing these weasels to communicate back to me that yes, they did not want me to commit fraud and by all means should disclose my employment status when meeting with representative at SSA. Just when I thought I had seen it all… the only process that could be more complex than applying for disability through social security is process of refusing to collect benefit to which you have unwittingly become entitled…As explained to me by a genuinely bewildered and sympathetic representative of SSA: the gist of my situation is that, by law, the SSA must dispurse to me the benefit to which I have been found eligible within 15 days but that the following events were most likey to ensue: based on the amount I have earned since june 15th at Convio, some of the benefit I will receive from SSA I will have to pay back to SSA and that my good friends at my insurance company will immediately start to reduce the monthly payments they send me significantly – to recover the portion of what they t paid me while I was actually entitled to a SSA benefit. Recall that my doctors have continually warned me about keeping my workload and stress levels within reasonable levels. This might actually be genuinely fun and funny were it not for the significant negative impact this might all have on my health, finances and attempts to restore my career – all because an insurance company has a policy and a process designed to manipulate my situation for the possibility of reducing their short-term financial liability by a meager amount of about $1,500/month regardless of the risk and disruption this process might have upon my welfare – that my friends is UGLY- what scares me now is that I’m now dealing with the unpredictable behavior of this insurance company that might act like a cornered, wounded animal- I’m visualizing a weasel with sharp teeth and claws with whom I’m competing for wedges of cheese on a monthly basis.I’ll try to keep my sense of humor – helps for me to share this with you all so please laugh with me and thanks for all you friendship, love and support through the good, the bad and the ugly,
Love,
johnnie
The good: My physical and cognitive progress has continued to a point where I am well enough to be driving myself in to work at Convio Tuesdays and Thursdays, running up to 3miles a couple of days a week – and even well enough to fly to New York to attend an industry trade show [CASE conference] where I represented the firm at a booth in the exhibit hall. Was well enough (or so I thought) to extend the trip for some rest and relaxation in Cambridge and Rhode Island.
The bad: on the ride back from Horseneck beach (about an hour south of boston ) to sister sheila’s house in Rhode Island. I fell ill. Thinking I was simply tired or had gotten too much sun at the beach and just needed a nap, I fell asleep in the back seat of van being driven by my mom. Only a few miles from my sister’s home in Bristol, mom noticed that my arms and legs appeared to be flailing. When she pulled to the side of the road and got a closer look, she (correctly) deduced that I was in the midst of a seizure. Nephew Jimmy who was on the ride, called ambulance and I was transported to emergency room at Rhode Island hospital. Examination and review of history including recent stroke by team of neurologist confirmed suspicion that I had experienced a seizure. Many theories were offered as to cause and prognosis, but consensus is the seizure is part of the “normal” course of recovery process from stroke – though recent factors of stress of return to work , travel, disruption to sleep, diet and a few missed doses of my many medications obviously pushed me over an edge that made a possibility an inevitability. In laymen’s terms –seizure during stroke recovery is common because some cells within the areas where damage from stroke occurred are still functional and as motor and cognitive recovery progresses the increased activity in these damaged areas creates electro-chemical activity that runs afoul as it hits the wall of scar tissue along previously functional pathways. These irregular, dysfunctional charges ignite adjacent “kindling” [other irregular neuro chemical activity] creating a circuit overload that results in a seizure essentially a brain cramp in which brain is generating more current than it can channel – aside from the obvious physical risks of falling or biting one’s tongue during seizure is the potential damage to cells in areas in which the seizure originates potential damage will vary depending upon intensity and duration of episode. Prognosis and treatment? Well I’m on my second phase of medications to reduce risk of a repeat seizure: started with dilantin now on keppra a less invasive ant-seizure med and the hope is that this will prevent another episode and that brain will resolve the issue by developing healthy, functional pathways for increased neuro chemical activity that accompanies increased motor and cognitive functions. Tricky phase will be weaning me off the ant-seizure meds and don’t yet know the timing and decision points for that section of the course. The motive for getting off the anti-seizure meds is that the side effects: fatigue, diminished attention and processing speed- because they work by chemically suppressing brain’s neuro- transmitting process. For those of you who’ve been following my medications closely, you may recall that I am also taking drug called baclofen that operates in similar fashion to treat muscle cramping by chemically inhibiting spinal receptors from processing errant/excess signals from brain. So the seizure was somewhat foreshadowed by issue I’ve been having with abnormal brain signal from right side of brain resulting in too much “tone” in muscles on my left side. Are you all getting this? I’m sorry for the length and complexity of the details, but I know that many of you are worried and so want to provide information as best I can to help you understand how and why I will continue to heal ok?
Ok..and now for the ugly. In the midst of all this medical drama at the insistence of my disability insurance carrier, I was “coaxed” with thinly veiled threats of possible ineligibility or disqualification from the disability benefits I am receiving through my employer’s private disability insurance policy -which pays me a reasonable % of my former salary if a medical episode prevents me from fulfilling obligations of my job and or performing at the level of ability I enjoyed prior to injury – great coverage if you can get it but gets pretty testy… as they’re now on the hook for serious$$ if I don’t recover fully- so their interest in having me apply for SSA disability is based on an absurd and grossly self-interested hope that I might qualify for SSA disability benefit- so that they can reduce the amount they pay me by whatever amount I might be able to draw from social security. Here’s where and how it goes from weird to possibly really ugly: after numerous calls to follow up on the status of my application to social security, I received notification that a medical board had reviewed my application and made the determination that the extent my injuries constituted enough disability to be eligible for social security disability benefits – in spite of the fact that I have been discharged from two rehabilitation programs based on extent of progress and recovery and that I was able to exercise vigorously every day, drive and have returned to work two days a week. So off I go for an appointment with a disability benefits representative to discuss distribution of the benefit to which I am now amazingly enough entitled. On the eve of the meeting with the feds, I thought I ought to make absolutely certain that I was not committing fraud by not disclosing to SSA that since submitting my application I had returned to part time work and was now earning some pay from my previous employer. Of course, to cover all my bases I also faxed a letter to my insurance carrier informing them of finding by SSA that I was entitled to benefit and my concern that I was under the circumstances obliged to disclose to SSA tat I was now earning pay through part –time work asking that they notify me ASAP if they did NOT want me to disclose this detail to the federal agency with whom I was meeting to discuss process of collecting benefit to which they had found me entitled. Must admit I did derive some degree of satisfaction forcing these weasels to communicate back to me that yes, they did not want me to commit fraud and by all means should disclose my employment status when meeting with representative at SSA. Just when I thought I had seen it all… the only process that could be more complex than applying for disability through social security is process of refusing to collect benefit to which you have unwittingly become entitled…As explained to me by a genuinely bewildered and sympathetic representative of SSA: the gist of my situation is that, by law, the SSA must dispurse to me the benefit to which I have been found eligible within 15 days but that the following events were most likey to ensue: based on the amount I have earned since june 15th at Convio, some of the benefit I will receive from SSA I will have to pay back to SSA and that my good friends at my insurance company will immediately start to reduce the monthly payments they send me significantly – to recover the portion of what they t paid me while I was actually entitled to a SSA benefit. Recall that my doctors have continually warned me about keeping my workload and stress levels within reasonable levels. This might actually be genuinely fun and funny were it not for the significant negative impact this might all have on my health, finances and attempts to restore my career – all because an insurance company has a policy and a process designed to manipulate my situation for the possibility of reducing their short-term financial liability by a meager amount of about $1,500/month regardless of the risk and disruption this process might have upon my welfare – that my friends is UGLY- what scares me now is that I’m now dealing with the unpredictable behavior of this insurance company that might act like a cornered, wounded animal- I’m visualizing a weasel with sharp teeth and claws with whom I’m competing for wedges of cheese on a monthly basis.I’ll try to keep my sense of humor – helps for me to share this with you all so please laugh with me and thanks for all you friendship, love and support through the good, the bad and the ugly,
Love,
johnnie
posted by brain under repair at 1:02 PM
1 Comments:
After a few weeks, and a little bit of reflection...I posted an alternative view of these events see:http://brain-under-repair.blogspot.com/2006/09/fear-and-loathing-in-austin.html
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