From time to time I receive emails from people who have relatives or other loved ones that suffer from a neurological or psychiatric condition. I respond to these the best that I can. Today, I'd like to share with you one such response. This is why neuroscience is important; it opens up a better understanding of diseases and treatments. Is your loved one suffering from a vegetative state - is he unconscious all the time, even though being awake - or is he in a minimally conscious state - actually emerging into awareness? Even worse: is he in a locked-in state - being fully aware but unable to communicate, and treated as unconscious?
The email below is anonymized in order to avoid identification. The text is otherwise unedited.
Hello, my name is RD. My 27 year old son, P was in a car accident 3 years ago. He was age 23 at the time of the accident. P suffered a traumatic brain injury. He now lives in a nursing home. In his medical records he is diagnosed as persistent vegetative state. I would call it minimally conscious state, especially these past several months.
We, his family have been very active in his life. I have searched everywhere I can think of for help, in-depth information, clinical trials, anything that may help him. He is aware of his surroundings. He is using his arms now, where 6 months ago he couldn't. He plays ball with his little girl. She was 5 months old when he had his accident. She plays pic-a boo with him. He smiles…especially when someone who he hasn't seen for a while comes to see him, his uncles for instance.
I am looking for someone to take interest in his condition, to see if he can be help. I just pray that someone will give him a chance. I know he has the potential to improve. We just need to be pointed in the right direction. Can you help or do you know who someone who can?
And here is my response:
Thank you for your email and please excuse my much belated reply.
I am deeply sympathetic to your son's condition and your problem. We are all moved by these tragic accidents. Through my previous work as a clinical neuropsychologist, I have seen people suffering from the same condition that your son is now.
My own shortcomings to be of any serious help to you is that I am living in Copenhagen, Denmark. Although you do not mention explicitly, I think you are living in the US. The medical treatment of post-traumatic amnesia, ranging from coma through vegetative state and to minimally conscious states, is still being improved from day to day. In countries such as the US and Denmark the treatment should be similar, on average. However, there may be places that are more focused and knowledgeable on these cases.
On your feelings that your son is actually better than vegetative state, I would suggest trying to find professionals that deal with the diagnosis of these problems daily. You should always bear in mind four (opposing) facts:
Vegetative state patients display signs and behaviours that makes us think that they are aware, conscious and responding. However, if a patient is truly in a vegetative state these signs are automatic responses, and not signs of conscious mental life
Vegetative state is often misdiagnosed (publications by e.g. Steven Laureys in Belgium). Many patients are at a higher level of function, such as minimally conscious or locked-in
Although a diagnosis is set at vegetative state, the condition of a patient might still improve. The rule is often that that the longer a person stays in a coma or vegetative state the worse the diagnosis. Saying that, one should never lose hope. We do not fully understand the mechanisms behind loss of consciousness, and even less about the awakening from such states.
Should a person regain consciousness after a vegetative state, one should always remember that the loss of consciousness had a specific and dramatic cause. Although consciousness may be restored (even as episodes) the brain is often significantly damaged. The person might still be unable to speak, attend, see etc. Many psychological and cognitive functions may be severely distorted or non-functioning
You do not mention where your son's diagnosis has been set, or where in the US you live, but I will suggest some names below. Unfortunately, I have no personal correspondence with Fins or Schiff, but know them through the scientific literature I read. Steven Laureys I know a bit, but I would suggest going to Schiff or Fins first, or the place (university / hospital) they are situated.
Joseph Fins at the Center for Bioethics, Colombia University ( homepage ) Nicholas D. Schiff at the Department of Neurology and Neuroscience, Weill Medical College of Cornell University ( E-mail )
Steven Laureys (Belgium, for further US directions) at the Cyclotron Research Centre ( E-mail )
I hope this could be of any help to you and your family.
Laureys S. (2005). Science and society: death, unconsciousness and the brain. Nat Rev Neurosci, 6(11), 899-909
Laureys S. (2005). The neural correlate of (un)awareness: lessons from the vegetative state. Trends Cogn Sci
Laureys S, Pellas F, Van Eeckhout P, Ghorbel S, Schnakers C, Perrin F, Berre J, Faymonville Me, Pantke Kh, Damas F, Lamy M, Moonen G, and Goldman S. (2005). The locked-in syndrome : what is it like to be conscious but paralyzed and voiceless? Prog Brain Res, 150, 495-511
Laureys S, Perrin F, Schnakers C, Boly M, and Majerus S. (2005). Residual cognitive function in comatose, vegetative and minimally conscious states. Curr Opin Neurol, 18(6), 726-733