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July 19, 2005
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Gene at http://curehd.blogspot.com/ is always a treat to read. He's posted a heart-wrenching article on his family putting his mother into nursing home.
Take a moment and visit Gene's blog. He writes what many fear to say.
Posted by Dave at 06:51 PM | Comments (0) | TrackBack
July 13, 2005
Two (or more) Sides To Every Story
Remember the story a couple of days ago regarding the deputy that was shot by a young man with HD?
I learned from HDAC.org that one of young man's parents has sent out an email and asked that it be passed along. You'll find the email at the end of this post.
As is typical in situations such as this, there are different versions of what happened. We have a first-hand account (with some second-hand) from a parent (e-mail) and we have a second-hand account (via the newspaper/media) of what the police said.
My heart goes out the family. Aside from the emotional stress, there will now be significant legal and medical bills. They'll also lose quite a bit of time from whatever jobs they may have in order to deal with the aftermath. I hope the community comes together and supports them financially and emotionally. They'll need it.
Did the police do anything wrong? We really don't know yet and we probably won't know the entire story even after the investigation is completed. Unlike on television shows, the lose ends are never all tied up and not all of the questions will have answers. The witnesses will never 100% agree. When the rules & guidlines that were given the officers are investigated, it will be found that they were not written for this exact situation (how could they have been) so there will then be discussions of interpretation.
There were some comments in the email that caught my attention. First, the young man is very fortunate to have a family that loves him so much. The HD community has a lot of problems and issues, but there is a lot of love within it.
Second, it appears that the writer of the letter was not informed by the police or others (or perhaps didn't catch it with all the emotion and trauma going on)...It is true that the police really couldn't do much if he wasn't committing a crime while sitting in the car. What is also true is that they must act if they believe that he is a danger to himself or is a danger to the community. BB guns are not harmless, they injure thousands of people a year and, on very rare occassions, even kill.
Any properly trained police officer will not stand back and watch while a person in a mentally unstable state (it increases, not decreases the risk) runs through the neighborhood with a dangerous weapon. They would be fired from their jobs if they didn't pursue.
One other thing the writer may not have been told, the deputies had no legal authority to force the young man to stay in the car. To do so could be considered unlawful imprisonment. Aside from the law, keeping a mentally unstable person that is in a panicked state trapped in the small confines of a car would normally be considered foolish if not cruel.
One oddity, according to the email, is the statement that the deputies targeted the legs when they shot. That would not be normal police procedure. Unlike television, it's not that easy to hit what you're aiming at and police officers are usually trained to not do that.
Since the writer of the letter is relying on the description of the event by the person shot, it would be safe to say that the writer was not there to see the shooting or if there was a lunge with a knife. So we don't really know, at this point, if the legs were targeted or not. The writer also makes it clear that (according to the person shot) the police fired only after the shooter aimed and fired at them. The newspaper accounts mention (repeatedly) a knife, so we do have a contradiction of facts. We really don't know the whole story yet. Hopefully they have a good witness, perhaps living in a hearby house, who saw the events.
This event does demonstrate the fallacy that it is 'safe' to shoot someone in the legs. The femoral artery is one of the largest in the body. A wound to the artery by knife, gun, or any other means can quickly cause someone to bleed to death.
What's likely to happen now? Well, it's going to be tough for the Barron family. They'll be heavily involved in the recovery and in the legal process. In addition to dealing with the criminal charges, they will probably end up filing a civil lawsuit against the county. These typically are settled for a moderate sum of money which will help with bills, but the outcome is uncertain and it could take a very long time to resolve. A lot depends on what the DA determines and decides from here.
Is there a police training issue involved here? It's really too early to say. I can see where a taser would have been useful in this case but we don't know if the police had them available (many departments don't). Even so, it doesn't sound like there was time to get one even if it was available (they're usually stored back in the police car, they aren't part of the officer's uniform).
If you are in a position to help the family (though they aren't asking for any help at this time), please do so. I can't begin to imagine how difficult this must be for them.
The email:
Dear Friends and Family of Joseph Marcus Barron,
As you may or may not have heard, on Thursday, July 7, 2005, at approximately 1:30 a.m., Joseph became a shooting victim and was transported to Brooke Army Medical Center in a near death state. When I arrived at BAMC, a hospital chaplain, who was paged along with the trauma team to receive Joseph in the ER, greeted me. He explained to me that Joseph had suffered major bone and tissue damage to both legs, at the knees, and that in the right leg, one of the bullets had severed a major artery. Joseph had lost a substantial amount of blood and his right leg was essentially dead. He told me I should be prepared to lose my son that morning.
But those of you who know my Joseph, know his spirit and his strength and his love of life. This afternoon (7/9), as his Aunt Yolanda, sister Stephanie, and I walked up to his bedside, he greeted us with a perky, “Guess what? They super-glued my muscles back to my legs!” Oh yeah, he’s still with us, in good spirits, laughing and joking and very much alive. Why? Because of all of your prayers! Prayers offered to our loving and merciful God in heaven. A perfect God who heard you and reached down and touched not only Joseph that faithful morning, but the surgeons whose hands and spirits He guided as they skillfully repaired Joseph’s torn and shattered legs during some 12 hours of surgery that day. These wonderful, wonderful men and women were brilliant! They never gave up, they never said we can’t, and when they needed an additional vascular surgeon they went out and found one and flew him in just for Joseph’s benefit. When they came out to talk to us, they looked tired, but always offered nothing but hope.
You see, we offered a prayer, wondering, did it serve its purpose, was it heard above? Well, be assured, your little prayer, your whisper to God, your gaze up to the Heavens were shouts and screams which yielded a miracle on Thursday. But understand this, Joseph is not out of danger. Don’t stop praying!!!
Joseph has only cleared the first hurdle. He is alive. Now, he must strengthen his body and his spirit in order to endure what is to come. His right leg was without blood flow for so long, he is lucky to still have it. His surgeons robbed veins from other parts of his body in order to construct new arteries to feed his right foot. The graft clotted once and was cleared, but is barely holding. If it fails again, Joseph will lose his right leg at the knee.
His left leg is nothing but shattered bone, but it has good circulation. Only after the right leg is managed, will he undergo total reconstruction of the left leg. Is there good news? Yes! His prognosis is that he will survive, but he will be severely crippled and probably never walk unassisted again. You know why I say probably, don’t you? (Keep praying!)
Now, you’re probably wondering how did this all come to be, right? Well, again, as you may or may not know, Joseph is a victim of Juvenile Huntington’s Disease. He was clinically diagnosed at age 13 and genetically confirmed at 18. One of his greatest problems has always been psychotic episodes of rage, disorientation, delusions, and extreme panic attacks, and he has had many in the past five years.
He was in the mist of one of these episodes when deputies were called to our home that Thursday morning for a “loud music” complaint. Joseph’s music.
On arrival of the first deputy, Joseph and I walked outside together. On seeing the deputy, Joseph jumped into the family car and locked himself in. As Joseph was not in the commission of any crime, the responding Bexar County Sheriff’s deputy asked me what I wanted him to do. I explained that Joseph was a psychiatric patient, and if anything, I needed him (the deputy) to help me restrain and transport Joseph to his mental facility. The deputy responded that the Bexar County Sheriff’s Department had a policy in place that did not allow him restrain or transport psychiatric patients. This should have been the end of the story.
But, at this point two other deputies arrived, and having just quoted me their policy, and in apparent blatant violation of that policy, they decided to attempt to restrain Joseph, who was now in an obvious psychotic panic/distressed emotional state. Joseph was still locked in our car, in our driveway, not in violation of any laws. But then the deputies noticed he had a pistol in his hand. When they asked me about the pistol, I clearly explained that it was a BB pistol. They learned this for themselves when Joseph began discharging BBs, inside the car. The deputies watched as the BBs did nothing but bounce off the window glass back onto himself. They knew well they were not in danger of the BB pistol, especially if they kept Joseph contained in the car. Had they left him to us at this point, this would have been the end of the story.
Well, that did not happen. For some unknown reason, one of the deputies allowed Joseph to exit the vehicle. Joseph did not attack the deputies, he did not point his pistol at any of them, or lunge at them with a knife as reported in the news, he only attempted to run away, attempting to distance himself from them. He was in a extreme panic state, but still, not in violation of any law. Without any provocation or just cause, or prompts from us, the deputies felt it necessary to draw their weapons. Aiming at Joseph, they pursued him down the street. At this point, Joseph's stepmother is screaming for the deputies to leave Joseph alone. The deputies did not acknowledge her. They knew they were going to shoot this boy.
Easily trapping Joseph about a block down the street, the deputies targeted both his legs and fired their weapons striking him twice in the right leg, and one in the left leg. Joseph told us later that he came onto a fence, and when he turned around he saw the deputies coming at him with their nightsticks, so he did raise his pistol and fired one BB at them, wanting to keep them away. They responded with their service revolvers.
Shooting any person for any reason, especially one who you know to be experiencing a psychiatric episode is not an option. The deputies were wrong on many counts. They disregarded their directive not to attempt restraining a psychiatric patient, they targeted both legs, and they left the scene without asking for our statements.
In that we were not allow to give a statement of what had occurred, the deputies were able to get Joseph arraigned that morning for three counts of attempted capitol murder of a peace officer. His bond was set at $300,000.00.
I cannot stress enough, had the deputies followed published procedures and guidelines, had I been given the opportunity the deal with my son alone, this senseless shooting would not have occurred. How this event will affect his mental status, no one can speculate, but Joseph himself has asked for counseling to help him deal with what has happened. To add insult to injury, because of the charges against him, the family has limited access to him while he undergoes all his treatments.
The news of course [ed: referenced article] painted Joseph as a night crawling thug, wielding a gun and a knife, lunging and slashing and attacking the deputies, who of course, shot him only in fear of their own lives. Of this I can only say, the conduct and actions of field deputies only reflect the leadership downtown. These were poorly trained men who had no business carrying guns and responding to calls from the public. One of them was quoted as saying, “He (Joseph) was screaming for us to shoot him, to kill him.” So that request they were apparently willing to oblige; our request for them to leave him alone they were not. Now let me add this, we are talking about three street deputies. Not the entire Bexar County Sheriff’s Department. We know for a fact that there are some excellent, professional deputies on the streets and in the detention centers. Our concern lies with the three who, maybe watch a little too much Cops before putting on the uniform.
If you feel compelled to write to someone, don’t bother writing to [the DA] [ed: Text deleted to protect the innocent, apparently the District Attorney hasn't made herself available to assist help this family.]. Sheriff Lopez is in receipt of my statement, as is the Criminal Investigative Division of his department, and the State Attorney General, Greg Abbot, is in receipt of a request for an independent investigation.
Other than that, just please keep praying for this boy. He is really going to need it. May God bless all of you for your support, and one final note, Joseph is at BAMC, 2 West, but please do not send any flowers or bears or anything. He is under arrest and guarded 24 hours a day because he is a flight risk (the mentally at work here). If you send something, the deputies will confiscate it. Cards and letters are okay. The address is:
Joseph M. Barron
BAMC, Bldg. 3600, 2 West
3851 Roger Brooke Dr.
Fort Sam Houston, TX 78234-6200
Please feel free to pass this email on to as many supporters as you can possible think of. Bye for now.
Posted by Dave at 07:47 AM | Comments (2) | TrackBack
July 10, 2005
Murder Trial Postponed
You might remember this story about the fatal beating of man with Huntington's Disease.
The trial has been postponed again. From the Leaf Chronicle:
Teen's murder trial rescheduled againA trial date for a teenager accused of killing a disabled man in Sunnydale Mobile Home Park last July has been rescheduled again.
Jervion Shante Akins, 16, along with Wayne Lee Pierce II, 31, and Ramone Pierre Gholston, 18, are accused of beating Shane Crossley to death. Crossley suffered from Huntington's disease, a genetic disorder that impaired his speech and physical abilities.Akins trial is scheduled to begin Sept. 19 and a trial conference is set for Aug. 11.
Posted by Dave at 09:19 AM | Comments (0) | TrackBack
July 09, 2005
Amish Involved In Genetic Research
The Toronto Globe and Mail has a fascinating article on the Amish and their involvement with genetic research.
"It's weird and it's wonderful," said Terry Sharrer, medical curator of the Smithsonian Institution in Washington D.C. "I have never seen anything like this."The children's clinic is the creation and life's work of Dr. Holmes Morton and his wife Caroline. The Harvard-educated couple surprised colleagues and friends in 1987 when they announced they were giving up prestigious urban posts in Philadelphia, packing up the family and starting a new life among the Amish and Mennonite religious sects.
It's a place where the laundry of plain clothes flaps in the breeze and barefoot children in smocks and straw hats run around homes shared and passed down by multiple generations. Road signs warn drivers to share the road with the horses and buggies.
Morton hasn't regretted the move.
"We discover a new gene almost weekly," he said.
Isolated populations with homogenous genes such as the Amish in central Pennsylvania, the Ashkenazi Jews and Indian tribes offer genetic researchers unparalleled insight into disease and genetics.
Posted by Dave at 06:32 AM | Comments (0) | TrackBack
Oops - Headline Error
Headline to a WFIE web article:
Potential Cure For Huntington's Disease
Err...wrong.
It is a nice article on the benefits of Tetrabenazine to treat movement in Huntington's Disease.
Tetrabenazine was submitted, in late April, to the FDA for approval as a treatment for chorea (movement) caused by Huntington's Disease. It's expected to be approved sometime later this year.
Posted by Dave at 06:06 AM | Comments (0) | TrackBack
July 08, 2005
Deputy Shot
18-year-old with HD shot by deputies.
It sounds like the deputies handled this situation with great restraint:
Barron walked away from officers as they instructed him to drop his weapons, Garcia said. The man told the deputies to "go ahead and shoot me, go ahead and kill me," Garcia said.The father told deputies that the gun his son was holding was a pellet gun, but Garcia said deputies couldn't be sure because "to look at it, it doesn't look like a pellet gun."
At some point, Barron turned and fired the pellet gun, striking one deputy in the neck, according to officials. Still the deputies didn't fire their weapons.
Deputies say it wasn't until Barron lunged at them holding the knife that they shot him.
Posted by Dave at 08:17 AM | Comments (1) | TrackBack
July 07, 2005
Molecular Trigger For Huntington's Disease Found
That's the headline of a press release for a study published in the journal "Neuron".
Every day researchers understand Huntington's Disease better and better. And, once again, the research shows potential to help in the treatment of other diseases.
Here's the press release:
Molecular trigger for Huntington's disease found
Researchers have discovered a key regulatory molecule whose overactivation by the abnormal protein produced in Huntington's disease (HD) causes the central pathologies of the disease. The abnormal HD protein activates the regulatory protein called p53, which in turn switches on a host of other genes. This abnormal gene activation damages the cells' power plants, called the mitochondria, and kills brain cells.
The researchers also speculated that disturbances in p53 may also play a role in some forms of Parkinson's disease and amyotrophic lateral sclerosis, or Lou Gehrig's disease.
Ironically, p53 is the same regulatory protein that is inactivated in a large fraction of cancers. This inactivation allows abnormal cancer cells to escape the cell's protective "suicide program" that would normally kill them. The researchers theorize that the lower incidence of cancer in HD patients could be caused by the protective effect of overactive p53.
In the July 7, 2005, issue of Neuron, Akira Sawa and colleagues at Johns Hopkins University School of Medicine reported experiments ranging from molecular studies in cultured brain cells to analysis of the brains of human HD patients that demonstrated the central role of p53 in the pathologies of HD.
Their studies with cell cultures showed that the abnormal HD protein selectively binds to p53 and increases its level in cells. They noted that the brains of patients with HD also show substantial increases in the p53 protein, with the highest levels in cases with the most extensive pathology.
The researchers' experiments also revealed that this p53 increase causes an overactivation in the genes regulated by p53, which is called a "nuclear transcription factor" because it regulates the transcription of its target genes in cell nuclei.
In studies of cell cultures and of mice engineered to have HD, the researchers found that the p53 increase causes malfunctions in mitochondria. What's more, they found that this p53 increase induced by the abnormal HD protein greatly increases cell death.
The researchers also found effects of the abnormality in p53 in whole animals. They found that deleting p53 suppresses damage to neurons in the eye of fruit flies engineered to have the abnormal HD protein. And in mice with the abnormal protein, knocking out p53 corrects behavioral abnormalities that the mice otherwise display. These behaviors include abnormal reflexes such as an inhibited startle response to loud noise, which is also present in human HD patients.
"In summary, our study establishes a specific role for p53 in HD," concluded Sawa and colleagues. "As p53 is a nuclear transcription factor that regulates various mitochondrial genes and insofar as mitochondrial dysfunction appears important in HD, our findings provide a molecular mechanism linking disturbances of nuclei and mitochondria in HD." Download PDF
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The researchers include Byoung-Il Bae, Hong Xu, Shuichi Igarashi, Masahiro Fujimuro, Nishant Agrawal, Yoichi Taya, S. Diane Hayward, Timothy H. Moran, Craig Montell, Christopher A. Ross, Solomon H. Snyder, and Akira Sawa of Johns Hopkins University School of Medicine. This study was supported by USPHS grants; foundation grants; Huntington's Disease Society for America grant, Hereditary Disease Foundation grant, Stanley, NARSAD award, S-R; Korea Foundation for Advanced Studies Predoctoral Fellowship.
Byoung-Il Bae, Shuichi Igarashi, Masahiro Fujimuro, Nishant Agrawal, Yoichi Taya, S. Diane Hayward, Timothy H Moran, Christopher A Ross, Solomon H Snyder, Akira Sawa: "p53 Mediates Cellular Dysfunction and Behavioral Abnormalities in Huntington's Disease" DOI 10.1016/j.neuron.2005.06.005 Publishing in Neuron, Volume 47, July 7, 2005, pages 29-41. http://www.neuron.org/
Posted by Dave at 10:01 AM | Comments (1) | TrackBack