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Reposted from A Day In The Life by Village Vet Editor's Note: Please add this to the group. -- Village Vet

 photo 2015-02-05-21-19-42-1537530589_zpsu28joqcr.jpeg

Friends, I'm sorry to say that today's diary is another "almost rant."

I heard the story directly from the couple that this happened to last week, yes, in Chattanooga.

Let me set the scene.

The couple consists of an attractive blond woman, under thirty years old. She has leukemia, and is on interferon and other heavy duty medications, including medications for her pain. She has Hep C. She also has a 8 month old baby boy. (He is the cutest baby I have ever seen, and is a really, really good baby!) She is just barely managing to work a desk job, which pays so much money that she still qualifies for food stamps and Medicaid. The man is slightly over forty. His fingers were amputated and sewn back on his hands some years ago. He does not have full use of them. He can't really read, and he can't go back to his job of running heavy equipment. He is fighting to get SS Disability and Medicaid. He also has some problems related to the death of his teenage son several years ago. The baby is not his, yet he cares for that child better than I could. He takes care of the baby every day, so the mother can work. Then he takes care of the mother on the days she takes her treatments, and can't stand on her own. They do not own a car. They depend on the bus for transportation. They live a very quiet moderate life now.

Thier problem:

Several months ago, the woman had a grand mal seizure, and she hit her head. She went to the ER in an ambulance, where she had 3 more serious seizures. Because of the blow to her head, and because they did not have her history, the hospital assumed spousal abuse as the cause of the seizures, and they called the police. The detective wrote out a statement from her less than 15 minutes after her 4th seizure, and while she was on IV anti-seizure medication. She does not remember signing it. Her partner was arrested for beating her up. When she really woke up, and was told what had happened, she detracted her statement. However, the state took the case up anyway. They also put an order of protection in place. So far, this doesn't sound too bad right?

Follow me below the fold for the insanity.

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Reposted from KosAbility by mehamo Editor's Note: An interesting diary from a man who suffers from left temporal lobe epilepsy. -- mehamo

Okay, so there is a bit of snark in that subject line.

I have two disabilities. One is epilepsy, and the other is Dupuytren's Disease. (The two are thought by researchers to be related.)

I was in the Navy when I was diagnosed with epilepsy in 1995, an aviation electronics technician first class in a helicopter squadron. Although I do not remember either incident, I apparently suffered a seizure on my sofa at home, and a couple weeks later fell off a helicopter from another one whilst servicing it.

That ended a seventeen year career in the Navy. It also got me declared "unemployable" by the Veterans Administration (meaning it seized my retraining benefits, though my wife can use them).

It played a large part in my divorce from my first wife (but I will not go into that here).

More on the problems of both disorders below the quivering orange line.

KosAbility logoKosAbility is a Sunday 7pm eastkost/4pm leftkost volunteer diarist series, as a community for people living with disabilities, who love someone with a disability, or who want to know more about the issues. Our use of "disability" includes temporary as well as permanent conditions, from small, gnawing problems to major, life-threatening health/medical ones. Our use of "love someone" extends to cherished members of other species.

Our discussions are open threads in the context of this community. Feel free to comment on the diary topic, ask questions of the diarist or generally to everyone, share something you've learned, tell bad jokes, post photos, or rage about your situation. Our only rule is to be kind; trolls will be spayed or neutered. If you are interested in contributing a diary, contact series coordinator postmodernista.

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Sun Sep 21, 2014 at 08:08 PM PDT

The end of a day on call…..

by mehamo

Today in my life, on call as a clinical epileptologist (and neurologist)………...

Poll

How do you feel about work right now?

13%5 votes
36%13 votes
22%8 votes
11%4 votes
16%6 votes
0%0 votes

| 36 votes | Vote | Results

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Reposted from otto by mehamo

I have been meaning to write this.  I have written a number diaries on epilepsy.  I have well controlled Left Temporal Lobe Epilepsy.  Phenytoin controls the seizures, but I like to take as low a dose as possible.  Very rarely, I will experience a seizure that is not extremely debilitating.  I experience no loss of consciousness but it carries with it certain interesting characteristics which give me information about what functions of my brain are being primarily impacted.

I share this because I would like to read it.  I am never certain as to what happens in the minds of others, but it seems like this is one that I would be interested to read.  

I hope it's informative, and thought provoking.  

The assignment I gave myself-

Describe, in detail, what it is like to have a simple partial seizure.  

Update- I feel the need to clarify here that each individual may experience something much different.  In the comments, you will see a description by someone with a similar diagnosis.  The experience is much different.

It's like driving in your car towards the coast.  You can't see or feel any of the coastal scenery just yet, but when you put your nose out the window, you can feel the ocean hanging, suspended in the air.  

It is imminent.  

Here we have this one dishonorable neuron.  Yes, it's true that neurons are electrically excitable brain cells.  But, damn, does this little fucker really have to act this way? He just starts getting too amped or something, and boom, the whole crowd begins to erupt in some sort of mutual misfiring party.  

"Woot! We are gonna shut this place down!"

At any moment, however, the Phenytoin Anticonvulsant squad will shut THEM down.

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Reposted from cloisterwood by Kevskos

Researchers presented evidence at the International Headache Congress, held from June 27 through June 30 in Boston, MA, that attitudes toward people with migraine headaches are similar to people with epilepsy. Robert E. Shapiro, MD, PhD, professor, neurological sciences, University of Vermont College of Medicine, Burlington, carried out the study along with Peter Reiner, VMD, PhD, professor, National Core for Neuroethics, University of British Columbia, Vancouver, Canada. They asked asked 765 people to rate their attitudes to a hypothetical scenario:

"Jane has a _ attack nearly every week. While attacks have always gone away on their own, afterwards she may need to miss work or family activities for an entire day. Unfortunately, treatments for _ attacks do not work for Jane."

In each vignette, "Jane" suffers from 1 of 4 possible attacks; the blanks were filled with "migraine," "epilepsy," "panic," or "asthma" attacks.

"Each scenario has the same number of attacks, the same level of disability in terms of missing work or family activities, and the same prognosis, meaning that treatments are not going to change the likelihood that this will resolve[.]"

Survey participants completed the Attitudes Toward Mental Illness Questionnaire (AMIQ) after reading the vignettes. The questionnaire asked respondents how comfortable they would be to have "Jane" as a co-worker and to invite her to a dinner party as well as how likely that Jane's career would be affected, her husband would leave her, and she get into legal trouble.

Out of a maximum possible score of 500, "asthma attack" received 250 points, "migraine" received 266 points, "panic attacks" received 267 points, and "epilepsy" received 262 points.

Dr. Shapiro said that the stigma or shunning from epilepsy might originate with a fear of possession, but the stigma of migraine may be from the view that the disorder is a character flaw regarding the ability to manage pain, according to an article published by Medscape (Caution: free membership required to view).

Finally, research-based evidence that individuals with migraines are viewed negatively by others.  

Now, if migraineurs only managed to have the disease respected as debilitating as epilepsy, asthma, or panic attacks.

That would be helpful.

Poll

Are migraine headaches as debilitating as epilepsy?

33%10 votes
36%11 votes
20%6 votes
10%3 votes

| 30 votes | Vote | Results

Discuss
Reposted from Horace Boothroyd III by Horace Boothroyd III

"You look too young for that" is a common refrain I've heard all my life. Either for simply revealing my age or when I've been in the position of having to explain why I have arthritis and other medical issues. There is a reason for that. My genetic makeup precludes me from making type III collagen. So I will probably always have a baby face.

Why the zebra?

The problem with the absence of this collagen is I tear easily. From the level of organ tissue to the cellular level I get tears constantly. When I was in school I would injure myself taking tests because repetitive activities like filling in bubbles strains those muscles. On the plus side due to the fact that the process of building stronger muscle involves tearing the muscle tissue means that I'm usually stronger than I look.

Disease characteristics. Ehlers-Danlos syndrome type IV (EDS type IV) is characterized by thin, translucent skin; easy bruising; characteristic facial appearance (in some individuals); and arterial, intestinal, and/or uterine fragility. Vascular dissection or rupture, gastrointestinal perforation, or organ rupture are the presenting signs in the majority of adults identified to have EDS type IV. Arterial rupture may be preceded by aneurysm, arteriovenous fistulae, or dissection but also may occur spontaneously. Neonates may present with clubfoot and/or congenital dislocation of the hips. In childhood, inguinal hernia, pneumothorax, and recurrent joint subluxation or dislocation can occur. Pregnancy for women with EDS type IV has as much as a 12% risk for death from peripartum arterial rupture or uterine rupture. One-fourth of individuals with EDS type IV who have undergone laboratory testing to confirm their diagnosis have experienced a significant medical problem by age 20 years and more than 80% by age 40 years. The median age of death in this reviewed population was 48 years.
This doesn't mean I'm due to have a blowout in a short time due to my age now, I could theoretically make it to an age where I could collect Social Security, if they don't raise the age again. My paternal grandfather, whom I most resemble, made it to 54 before his heart went. I'm on SSD now though due to my essentially fragile state, although my diagnosis with them is depression since trips to the ER for the uninsured are not considered for Social Security. But treatment for severe depression can be obtained if you are poor enough and don't mind being treated like a lab rat for big pharma.
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Reposted from left rev by Sandy on Signal

Going through the high school graduation thing with my second daughter has made me think about milestones. I vest a lot of important in milestones. When my first daughter turned 18 and was eligible to vote, I embarrassed the hell out of her by picking her and her friends up from school, driving them to the polling place and taking a buttload of pictures. I was the parent jumping up and down like a fool when my youngest daughter actually got a (fluke) hit in her last softball game of the season. My middle child had to pretend she didn’t know me at her first competitive choir competition in Middle School, because I was standing on the top row of the bleachers, holding up a sign written on a pizza box the whole time that said  “Sing it Girl!” I love to celebrate milestones. We have prom/Sadie Hawkins/Homecoming dance pictures of my oldest daughters plastered all over every square inch of the hall. Every sport they’ve played, every school performance, every first date…I just can’t get over it. My grandson is on the verge of potty training success, and I’ve got biiig plans in the works.

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Tue Jun 04, 2013 at 01:40 PM PDT

Epilepsey Journey...

by Kevskos

Reposted from Kevskos by Kevskos

Here and back again.  Sort of like a seizure.  Having them every day sucks.

I finally have an appointment  with an Epileptologist tomorrow and that is the adventure.  See, I live in Yuma AZ and I get to go all the way to Phoenix (~200 miles) for the appointment.  I'm taking an airport shuttle van to Sky Harbor Airport and then a shuttle to the clinic.  And back home in PM.

continued under the orange seizure.

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Reposted from mconvente by UTvoter Editor's Note: This has huge implications for epilepsy research so wanted to make sure this diary is getting seen. -- UTvoter

Note - This article is published through my username on behalf of some members of the Penn Science Policy Group, a newly formed organization at the University of Pennsylvania from "which interested Penn science students and faculty can engage in discussions about science policy ranging from issues in science education to US government funding battles of the NIH."  I am a member of this organization.  Some of the text in this diary is copied with permission from articles written by other members; I will cite these within the diary.  Since this article is on behalf of the group, when I offer my own opinions (either in the diary text or comments), I will indicate this as well.  The opinions in this piece may not reflect those of all members in the Penn Science Policy Group.

We hope that you will consider signing the "Speak Up For Science" Petition, which is being sponsored by the American Association for the Advancement of Science (AAAS).


There is only one week remaining until the largest automatic cuts to the federal budget in history - known as the sequester - take effect.  While President Obama and the opposition Republicans battle as to who is at fault, the reality of the situation is that if a deal is not reached by next week, all branches of government will suffer an immediate reduction in funds for the rest of FY2013, and such cuts will continue until restored by Congress.  Reductions have been estimated to be between 5.1% and 8.2%, depending on department.

The sequester arose as a so-called "nuclear option" included in the Budget Control Act of 2011 that ended the debt ceiling battle during that year.  If Congress and the White House could not agree on budget cuts for specific departments by January 1, 2013, then automatic cuts to all departments would go into effect.  This date was extended to March 1, 2013 after passage of the American Taxpayer Relief Act of 2012.

If the sequester process were to be enacted, the economic impact for the entire nation would be devastating.  As reported in the above-linked Washington Post article,  "Macroeconomic Advisers, an independent economic group, said Tuesday that sequestration would cost 700,000 jobs and push the unemployment rate a quarter of a percentage point higher than it otherwise would have been."

The impact of the sequester would hit science and medical research especially hard.  The National Institutes of Health (NIH) makes up only 0.8% of the entire Federal budget, so for a very small amount of savings relative to the entire budget, the number of funded grants would drop by 25%, severely impeding the pace and breadth of research able to be conducted.

As members of the Penn Science Policy Group, we have been active in informing the general public about the many benefits of science and medical research, and we present this information below.

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Yesterday, upon hearing the news that HRC is now hospitalized and receiving anticoagulation therapy for a "clot" related to her recent concussion, I wrote a diary extemporaneously out of concern for this very admirable human being.

Without complete information, I speculated on what was reported and it turns out that my hunch was correct.....it is now reported that she suffers from a dural venous sinus thrombosis - specifically a right transverse sinus thrombosis.

This is a serious complication related to her recent concussion and thankfully, HRC is now receiving proper care for this.  I am so glad that she did not reportedly have any further neurological deficits from this, as other complications related to dural venous sinus thrombosis are surprisingly common.

Below is a brief explanation of what this diagnosis is, how it can develop and what is done to treat it.

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This just in via the NY Times regarding Hillary Clinton:

http://www.nytimes.com/...

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Reposted from mehamo by mehamo Editor's Note: I published this diary in 2010. At that time, I was resoundly ridiculed. This just goes to show that patience is a virtue. It takes a long time for progress to be made. -- mehamo

Towards the twilight of President Obama's glorious two terms in office come 2016, people will realize how the virtuous power of his patience set the course for a progressive golden age.  We all seem to be blaming each other in this post election aftermath in terms of improper strategy, but I am of the minority of progressives who feel that this past midterm election of 2010 will end up being the driving force for a new progressive revolution.

The more this presidency unfolds, the more it unfolds according to President Obama's ultimate long-term plans for the United States.

Let me explain below the fold....

Poll

Optimistic about our long term future as a country?

32%36 votes
19%21 votes
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| 110 votes | Vote | Results

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