Huntington Disease Lighthouse Families

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Must Listen: This American Life

Posted by bluedaisy 
Must Listen: This American Life
April 14, 2013 10:53PM
I was listening to NPR yesterday and was listening to this story (totally unaware of the ending of this story) I kept thinking this man's problem sounds like HD. And it was. A story about a doctor who kills his father and wrongly convicted: Dr. Vince Gilmer. Its about an hour long but a truly heartbreaking and important message. A message about mental illness and stereotyping and not actually listening to afflicted people!

Please listen to this story! I hope this man, this doctorwith HD, will be released from prison.

Dr. Gilmer

Edited 1 time(s). Last edit at 04/14/2013 11:04PM by bluedaisy.
Re: Must Listen: This American Life
April 15, 2013 07:31AM
Thanks for the Link. I will pass it along.

As I listen, I think I would have also though of HD from the beginning. I even wonder after the diagnois, does Dr Benjamin G realize how common those actions and symptoms are.

I wonder if the lack of knowledge of Vince's Father's condition was actual or just denial (unawareness).
Re: Must Listen: This American Life
April 15, 2013 08:44AM
I wonder if there is anything the HD community can do to help...

Heartbreaking story...
Re: Must Listen: This American Life
April 15, 2013 10:05AM
I think most of us could have diagnosed this man, once we knew of his behavior problems, from his speech alone.

Dr. Benjamin still has a lot to learn about Huntington's Disease. He wants to get Dr. Vince out of prison, but then what? Who will take care of him? He divorced his wife. His sister is almost certainly ill herself if she took off before her brother's trial and no one has heard from her since. Maybe his mother would take care of him if she is able but is that fair to her given the fear she would live with every day? After her own horrendous marriage, should the rest of her adult life be hell too? Given his past violence there is no nursing home in this country who will take him and in some states they would be legally prohibited from doing so. Maybe Dr. Benjamin should find these things out before he gets Dr. Vince out of prison where at least he is being cared for in the psychiatric section. Not that I think Dr. Vince should be in prison legally or morally, but we have to deal with the real world we live in. With appropriate medication, this tragedy didn't have to happen, but Dr. Vince stopped his SSRIs abruptly on his own. Neither his mother (even if she became his legal guardian) nor a nursing home can legally make him take any medication.

I am thinking of all the caregivers who go to their loved one's doctor complaining of severe behavior behavioral problems and get told, "It's not him/her, it's the disease" as if that was a final answer. Yes, we know that, but now what are we going to do about it? HD is a medical, legal, and social problem and until we have a system in place to deal with it holistically tragedies will continue to happen.
Re: Must Listen: This American Life
April 15, 2013 11:47AM
I truly think that some of those questions are not for us to answer, it is up to Dr. Gilmer's family: just as all of us have difficult situations to navigate through the course of HD. I don't believe he should be held in prison by default. Second, we can't assume based on our own preconcieved notions that his mother doesn't want to care for him or that he doesn't have people who want to care for him. The whole story came to light because Dr. Gilmer had people who believed in him and his true nature.

Dr. Gilmer was experiencing HD symptoms abruptly (most likely as result of his accident) and had no knowledge of his true neurological condition. Add onto that he was triggered into a post traumatic stress-like situation when his father started revisiting sexually abusive behavior. It is hard to judge someone with this type of condition going through a flashback-like situation.

I think this story is important because it does address the violent behavior and abuse that does happen in HD families (certainly not all). I don't want to offend anyone, but I think it is important to open the dialogue about what sometimes happens and how families deal with it. Most definitly, HD does not excuse this type of behavior, but coming from a history of HD with some similar aspects as this story; it helps me begin to understand. I would love to find an answer on how to deal with this so the extreme abusive/violent behavior does not become a family legacy alongside of HD. I grew up with this legacy and didn't realize the HD part until 7 years ago.

Marsha, my dream is to have a HD care center that treats the patients holistically. Medical, Social, Nutrition, Spiritual, Physical therapy, and Psyhchiatry (all with HD specific experts): this place would have a long-term placement facility, respite care, homecare, and outpatient clinic. I have dreamed if I won the 500 hundrend million lottery, I would want to start one. I don't even know if that would be enough.

Even with a cure close, people will still be suffering. Trying to get the treatment, insurance. Those who don't know it's in th family. HD patients truly need holistic treatment while waiting for that cure. Who even knows what stages of HD will be acceptable for a treatment?

Sorry for rambling, this story just got me going. At the very least, Dr. Gilmer's family will know the source of the tragedy and hopefully his extended family at risk will know about HD and take precautionary steps to maintain the best possible health. I know, in my family at least, knowing was the difference that made the living actually better. Even though it was a painful pill of reality to swallow: I will never regret knowing. The secrets destroyed my family and killed a few too. Now we are beginning to heal.
Re: Must Listen: This American Life
April 15, 2013 12:30PM
While those questions might not be for us to answer, there are not necessarily for Dr. Gilmer's family either. There is no one who is legally responsible for Dr. Vince Gilmer. Someone may step up and that would be wonderful but no one has to and my point is that someone needs to or else he may continue to harm himself or others. I don't know what the family situation is and even if Dr. Vince has family who will take care of him I know that there are other people with HD in prison right now who have no family or at least no healthy family members. Dr. Benjamin Gilmer has done his duty as a doctor and gotten the diagnosis and a lawyer may do his and get Dr. Vince out of prison, but if someone doesn't help Dr. Vince to get care in the community there could be another tragedy. With HD, everyone may do their duty but that may not prevent further suffering even when that suffering could be prevented with appropriate holistic care. And it's not just a case of lack of resources, there are also legal barriers.
Re: Must Listen: This American Life
April 15, 2013 01:42PM
The legal barriers which protect the rights of PHD'a to refuse medication to control behavior have in the case of HD caused more harm than good. A PHD has a responsibility and a moral duty if they wish to live in our society.
That being said education of caregivers goes a tremedously long way to thwart extreme behavior. Lets remember that the disease causes the behavior and the inability of the phd to control it. The correct approach to is teach a pHD how to deal with these behaviors even if only in a limited way and it can be done with proper and concerned staffing in a nursing home...along with some additional very strong individuals to help in extreme emergencies, it all costs money. It all seems like a pipe dream but I do believe it can be done along with the proper use of medication
I have a hard time placing phds with hardened criminals.
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