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More on Locked In Syndrome
- David J. Elpern (8 July 2005)
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Thank you for this article.
- Joseph J Ierano (8 July 2005)
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More PVS research required!!!
- Ali Rasool (9 July 2005)
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Thank you
- Jane Woo (9 July 2005)
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I am really surprised
- Andre M Japiassu (10 July 2005)
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Thank you Nick and his fellowmen
- Monika Birmontaite (11 July 2005)
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hope
- Jane Worlding (12 July 2005)
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Awareness of LIS crucial
- Faye Armitage (22 December 2005)
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Thank you to Nick and Grant
- Geoffrey S Bloom (12 September 2006)
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Helpful Teaching Tool
- M. Joy Gilbert (22 December 2006)
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Thank you for your honesty.
- tamico l. galtier (8 January 2007)
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You gave me insight
- Cyndi M Jasper (13 February 2007)
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Thank you, Nick
- Nathan S. Ivey (16 March 2007)
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Thank you Nick for Your Story
- Michelle A Fabre (16 April 2007)
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Waitaki school days
- Natasha J Flynn (2 May 2007)
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Thank you
- Jeanne L Catherine (3 June 2007)
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It is sad, but teaches us much!
- Ali Rasool (13 July 2007)
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My Mother is like you
- Latha Rajendra kumar (9 August 2007)
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Link to Documentary
- Fraser Grieve (28 August 2007)
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Thank you, Nick
- Cynthia J Tefft (7 May 2008)
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Never give up
- P Soto (20 May 2008)
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Low Blink System
- John S Dixon (28 May 2008)
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Looking for help for sister, recently diagnosed
- Kathy Sipple (4 August 2008)
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Life is a locked-in syndrome
- Hugh Mann (6 August 2008)
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Re: Looking for help for sister, recently diagnosed
- Odette Longo (13 August 2008)
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Re: Re: Looking for help for sister, recently diagnosed
- Kathy Sipple (10 October 2008)
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Listen to your heart
- Holger Schnaak (24 October 2008)
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Re: Low Blink System
- sankaran kishnamurthy shruthi (31 October 2008)
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Eye-tracking software opens online worlds to people with disabilities
- Sondra A. Balouris (16 July 2009)
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David J. Elpern, Dermatologist Williamstown, MA 01267 USA
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This is an extraordinary article. A great addition to the medical literature. In 1997, Jean-Dominique Bauby published a memoir of his experiences with locked-in syndrome: "The Diving Bell and the Butterfly." Knopf, 1997. This short eminently readable book is great supplemental reading to Nick Chisolm and Grant Gillett's brillant article. I think most people who liked this article will value Bauby's book as well. Perhaps, it was referenced here, but I missed it. Competing interests: None declared |
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Joseph J Ierano, Chiropractor 12 Old Hume Hwy Camden NSW Australia 2570
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I would like to thank the authors for this article and the BMJ for reproducing it. It was astounding to learn about a phenomenon I had only heard of, through the eyes (literally) of the sufferer. I hope I shall never forget this man's plight. Competing interests: None declared |
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Ali Rasool, Student B28 8QN
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Having wrote a dissertation for my Law degree on persistent vegetative state and now looking forward to embarking on a degree in Medicine, I would like to thank the author for providing first hand knowledge of a topic which deserves decorous attention. This sensitive area which is full of ethical and moral dilemmas needs to be discussed and researched further. Ali Rasool. LLB (Hons) Competing interests: None declared |
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Jane Woo, Medical Officer Rockville, Maryland, USA
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Thank you for this enlightening, descriptive, and frank account. I once had a patient who was locked in, and I wondered how he could bear his plight. I also thank the editors for not censoring some of the bluntest phrases; most US journals and newspapers would puritanically eschew such terms, even though they accurately capture the writer's true meaning. Competing interests: None declared |
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Andre M Japiassu, physician ICU UFRJ 20000-000 Brazil
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Physicians really make wrong judgements about locked-in patients: we think they want to die soon, but Nick's words touched our minds and made me warn my colleagues about this fact. Thank you all for the paper. Competing interests: None declared |
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Monika Birmontaite, student of medicine Lithuania, Vilnius
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Truly thanks to Nick and his fellowmen. As here we have never thought or heard about the transparent Perspex board. I know a person in locked-in syndrome, it might help him to communicate. Or at least help to feel not so lonely in such a state, as he hears about You. I'll read him the article. Certainly, there are ways we are trying to help him. They do just a very little still. Stay alert, Nick, maybe someday you'll hear a something to help you become more expressive. We'll try. Keep believing. Competing interests: None declared |
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Jane Worlding, Consultant Clinical Oncologist Walsgrave NHS Trust CV2 2DX
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All patients even those dying of cancer have hope! Hope of a miracle or just more realistic hopes of some treatment and more valuable time! This remarkable young man clearly has hope! This article reminds all of us that we should not assume we know what is best for our patients, even if it is what we think we might want for ourselves if we were in that same situation. It also reminds us of the value of human life ,no matter how compromised it may be. Competing interests: None declared |
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Faye Armitage, Caregiver/Educator Jacksonville, FL 32259
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Nick and Grant, thank you for providing such extraordinary insight into LIS. My son Jason(16) also suffered a basilar artery occlusion six weeks after he collided with another soccer player at age 7. Presumably he had a vertebral artery dissection with thrombus formation. He has been LIS since Dec. 1996 and lives with the fervent expectation that a cure will be feasible from stem cell research. Nick's sentiments about life with LIS are very much in line with Jason's own experience. Thank you so much for increasing awareness to the plight of people living with LIS. Competing interests: None declared |
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Geoffrey S Bloom, Lawyer to health industry Sydney, Australia 2026
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Thank you to Nick and Grant for your article. It was informative and moving and really well expressed. My personal experience with doctors is that they can easily be discouraging without realising the effect that they are having. There is a New Zealand case concerning an application to withhold life sustaining treatment from a man with severe locked-in syndrome, Auckland Area Health Board v Attorney-General [1993] 1 NZLR 235. The court ordered that the 'machines could be switched off" resulting in the entirely expected death of the patient. In that light, it is salutary to read about Nick, who clearly has enormous capacity to live a meaningful life and enjoy life. Nick, without meaing to be presumptuous, I am sure that you can continue to make significant improvements and become the old Nick again. Competing interests: None declared |
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M. Joy Gilbert, Speech Pathologist Brain Injury Rehabilitation, Inc. , Toronto, Ontario
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Thankyou for this most informative material. I can only imagine the difficulty of putting all this into words, but I am sure from the responses that your effort is greatly appreciated. I am stuggling to write an assessment report on a similar patient and came across your paper in the process. Reading this has given me a different perspective on my patient's condition and I will proceed to write the report in a more positive manner than I might have otherwise. I will also print the article for the staff who are working with this patient. Thankyou for sharing your experience with all of us! Competing interests: None declared |
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tamico l. galtier, housewife home 70363
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I am feeling so confused as to whats the best thing to do for my sister with this same condition. But after reading how much of a battle and times of frustration and suicidal thoughts..I know my sister would not want this. Nor would she want to put her 6 and 9 yr old daughters through this if she could only survive for just a few more years. This is like a bad nightmare because she was such a role model and an angel and a true christian for everyone in our family. Thank you for your honesty, Tamico Competing interests: My 38-yr old only sister has this. |
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Cyndi M Jasper, mom home
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This story gave me great insight into what my 15 year old daughter is going through. She was left in a coma after an auto accident. All the doctors were not only negative, but almost cruel in their responses. Pushing for life support to be removed, talk of persistent vegetative state, and being told that my daughter had nothing left worth saving. I picture her hearing all of these things and being so trapped, so scared. The pain I feel as her mom can not even begin to compare to what she must have and is still feeling. Well, after many months of nobody in the medical community caring what happened to her we were finally able to get someone to listen to us. I knew my daughter was trying to communicate with us. We started getting some eye blinks when we would ask her to. We have only been living this for just over a year, but she is slowly.....ever so painfully slowly getting some tiny little movements back. She smiles and laughs, groans and cries, tries and tries to move with little to no success with the exception on triggering horrible muscle spasms. Thank you for sharing your painfull story. Although I am in tears just reading about the pain and anquish you have gone through.....knowing that it is very much the same thing my daughter is going through, the story has helped me know her deeper. Competing interests: None declared |
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Nathan S. Ivey, graduate student/neuroscientist Tulane University, New Orleans, LA 70118
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Dear Nick, Thank you for taking on the immensely difficult task of enlightening the public about Locked in Syndrome. I am a graduate student in neuroscience at the Tulane University of Louisiana and I was preparing a lecture when I stumbled on your experiences. I will be giving a lecture on Locked in Syndrome to a large group of medical students and I hope to share some parts of your story with them. It is so important that these future physicians are aware of the salient issues here: that a person can be aware without giving outward signs. Nick, I worked for many years with veteran's of the Iraq War who had neuroinjuries before I was admitted to graduate school. I saw a wide range of problems that people faced. From inability to make new memories to inability to control excretion, to hemiparalysis, these guys had all kinds of problems. From those experiences, I learned two things about neuroinjury. Number one: The person with the injury needs to channel their anger, hope, depression and everything they have into wellness. It sounds like you are doing this. Number two: It is exceedingly rare, but miracles can happen..I worked with a young guy who had lost his sense of smell. One day, he got into a fistfight with another patient. The other guy socked him in the nose. Suddenly, his sense of smell returned. He fell on his knees and thanked the guy for punching him in the face! I thought you might enjoy that story. All the best, and I hope you will have a miracle of your own. Competing interests: None declared |
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Michelle A Fabre, Project Assistant Leicestershire County Council, LE3 8RL
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Dear Nick Thank you for sharing your story. It moved me very much and gave me some comfort to know that my mother is not alone in suffering from this very cruel condition. My mother, Linda suffered a very severe stroke on 22nd December 2006. We were not told what she'd had suffered from until 2 months ago, we were told that she'd sustained massive brain damage because the Resuscitation Team had take 25 minutes in all to get her heart started. It was a dire time for us over Christmas not knowing what was going to happen to her, she looked so awful with her eyes bulging out of their sockets and bleeding and she was so swollen all over her body. The Drs kept saying she was going to die and we should be prepared. Mum was moved to a hospital where they did the tracheotomy and she stayed in Intensive Care for a further 3 weeks. The staffs at Queen Elizabeth’s in Greenwich were marvellous and wonderful and we shall never forget the wonderful care and warmth they showed to her and her family. Unfortunately my mother had to be transferred back to her local hospital in East London. The hospital has to service a very large part of East London and is an extremely busy hospital. Again we were told by the Drs that the prognosis was not good and that she would probable die as she would keep on getting infections and this would be very hard for her to battle. My mother is still here and still battling. Mum has had many infections and many courses of antibiotics and she keeps on proving her doctor wrong and he's amazed that she's still here. Mum can move her head from side to side and she can follow someone moving around the room with her eyes. Mum can also show us her emotions, she can smile, cry and show us she's in pain or unhappy. The Drs are not convinced that she is aware of her surroundings and very negative when they talk about her, although we've never seen them talk about her in her presence, they always take us out of her room. We know that she can understand us as she smiles when we are joking or sentimental with her and she frowns when I tease her and that's not a coincidence! Some of the staff at the hospital she's in treat her without telling her what they're doing, this frightens her, and you can see it in her eyes. She has to be aspirated regularly but this doesn't always happen. One night when the nurse did check on her she'd stopped breathing as her tracheotomy had blocked with the shitty secretions, the nurse managed to unblock it but she was very close to dying. They should have checked on her more regularly. I and my two brothers, grandchildren, friends, partner visit her regularly and we talk to her about what we've been doing and what’s been going on and we have a laugh and take the piss out of each other. Mum smiles and sometimes she laughs. But there are days when she wont smile or do anything but make sad faces, we just sit with her and try to just keep her going. I like to massage her hands with creams but until recently they've become very stiff and she now looks a bit uncomfortable when I do it, so I’ve stopped. I try to imagine what it would be like to be locked in my body and not be able to tell anyone how I felt, not be able to just get up and walk, eat, laugh, love, cry, shout and I cannot imagine it at all, I like my mother am very verbal, demonstrative and gregarious, it would be my worst nightmare. There is so little information about LIS and the Drs don't really know too much about it. All I know is that my poor, frightened mother is locked in a prison and there is no key. My mum was a gregarious, outgoing, warm and funny person and to see her like this breaks my heart, no one can understand the shear sadness I feel. But I won’t give up on her no matter what the evidence says about people dying from this condition, where there's a will there's always hope and where there's a loving family there's strength. So I stick my two fingers up to LIS and will do my best to make sure my mother’s nurses and Drs read you’re article and become more interested. Keep hoping Nick and keep going my love! All the best Michelle Competing interests: None declared |
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Natasha J Flynn, Self-employed/mother Blenheim 7031
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I remember Nick well as I also went to school in Oamaru (Waitaki Girls)and the fact that Nick was also good looking helped, so every girl in their right mind noticed Nick!
I didn't know Nick as a friend but knew of him as I was good friends with his high school sweetheart and my sister (Tammie) was 'friendly' with Nick's younger brother, Matt.
When hearing of your accident I remember at the time feeling very sad for you and your family. You have often crossed my mind since, especially to remind me how we must value our time here & value our friends & family every day. So since seeing your story on TV it has only reminded me of all this.
You are an incredible guy Nick Chisholm and I really do feel for you as I know you certainly lived life and had worked hard through personal battles. You are an inspiration and I dearly hope for recovery and further medical intervention to improve your quality of life. Love the hair, you still look great! Keep moving on and know that you have touched many people's lives. Warmest wishes, Natasha Flynn (nee Wharton) Competing interests: None declared |
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Jeanne L Catherine, Life Coach 1312 Kenwood Lane, Charlottesville, VA 22901
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Dear Nick, Thank you for sharing your story. My friend is in the hospital now and we are taking turns sitting with him so he never has to be alone. We are aware that brain injuries cause a high level of exhaustion and we have a schedule for visits and rests. I know he must be so frustrated that he can't communicate to us. Sitting in the sidelines I am aware of the cycle of hope and grief that each person around him struggles with. Your article is a ray of sunshine in a medical establishment where diagnoses and outcomes are often confused. I remind myself often that the only thing I can do is choose how I want to respond to this crisis. What I want to do is be here with him. Pray, listen, watch and share the outside world with him in any way I can. Any recommendations about what gave you hope when you were completely locked in? Music? Singing? Stories? Quiet? What things sustained you - even for a moment? I will think of you often as we go forward. Please add us to your prayers. Competing interests: None declared |
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Ali Rasool, Teacher and self-employed businessman P.O. Box 28311 Newark, New Jersey USA 07101
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Everyone must be more careful when making serious judgments, whether doctors, friends or family because even when a person can not act or speak for themselves they still have rights. Most family and friends know what their loved one would have wanted done if they had the choice and that must be respected at all times, even after death. People must keep in mind that the sick, dying and the dead can hear what is being said so be very careful in your words about those in these states. On the Day of Judgment we all will have to answer for these things. Any questions or comments about what I have said can be sent to: ALIRASOOL2003@yahoo.com I was in college for physical therapy and so I sympathize with people in these types of situations and prefer natural methods to be carried out in all circumstances whenever possible to its fullest extent. Competing interests: None declared |
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Latha Rajendra kumar, Professor Physiology AIMST, Sungai Petani,Malaysia
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Dear Nick, It is with great admiration I read your article. My Mother went in to locked-in- sydrome in 1981 and is still suferring in her state. I often tell "Not even my enemies should get this" I read the same expression in your article. I often ask God why he has done this to my mother. Couldnt he give any other disease. She had a prenomition before she got this and said," Some thing terrible is going to happen to me" . But this is torture. I often want to know how she feels early morning when every person around her move and talk and she can only open her eyes and not communicate. She is in India and there are no means to improve her communication. We can see enough and cannot bear any more. Her constant needs both physical and emotional has drained my father. And the deep feeling that nothing will improve takes us to despair. We try to keep a positive attitude but it is nearly imposisble. Emotions erupt, we find faults, dont know what is best for her and have to keep a stright face for society. I am very touched by your courage. Only one thing I would like to tell you. You are cleanest and best and puerst person. In words and deeds you cannot harm others. And you take in all the injustice. God would have the reserved the best place for you. You are a super human being. I tell my mom this when ever possible. I salute your parents and care takers for the extreme devotion and care they are rendering. But at the end of the day you are the sufferer. Alone. In your world. I cannot describe the intense affection I feel for all people in Locked-in- syndrome. If at all I have any ambition, it is to alleviate people from this syndrome. This is my passion. I pray to God to give you all the strength and be with you. Dr Latha Rajendra Kumar Competing interests: None declared |
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Fraser Grieve, Accountant London SW66PP
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Amazing story, amazing guy. Please see the following link to the 20/20 article http://tvnz.co.nz/view/page/410965/1064186
Competing interests: None declared |
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Cynthia J Tefft, mom home/95356
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I recently watched the movie "The Diving Bell and the Butterfly", along with my 13 year old son. I was compelled to get more information on locked-in syndrome, as well as an overwhelming urge to volunteer somehow to help these individuals communicate or just to read to them. I have a new outlook on life and feel I have no right to complain. I have more than alot of people and if Nick can continue to be positive, then so can I. Thank you, Nick, for your story. It needs to be told. People need to hear your story. It is one of determination and hope. My son had no idea about this syndrome and he has gained a new respect for his life and the trials of others, that can happen so unexpectedly. My heart goes out to you. Competing interests: None declared |
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P Soto, Administrative Assistant II City of Laredo 78045
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My husband suffered a basilar artery occlusion 3 months ago. He was also diagnosed with Locked-In syndrome but is slowing coming out of it. He has since regained movement of both arms and legs, with his left a little stronger than his right. Doctors also told us he would probably never come out of it. He is proving them wrong. We hope, with time and alot of prayer, he will be able to overcome this syndrome. As you mentioned, this is something we wouldn't wish upon anyone. Never give up. God bless. Competing interests: None declared |
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John S Dixon, Executive Phoenix, AZ 85048
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After watching "The Diving Bell and the Butterfly", I created a low blink system for communication using a set of zones navigated by combinations of eye positions and eyelid movement. The system you are using with the transparent board seems to be getting at the same issue - speed. What has to happen is computer recognition of eye position (up, mid, down, right, center, left) and eyelid movement (rapid, single blink, multiple blink and paused shut) - each unique combination representing a letter AND the computer's ability to predict each word as it is being built. If my low blink system would be helpful - please let me know and I will scan and send wherever - I have worked out the rules that govern the system as well. I feel for you and hope I can help - stay courageous. Competing interests: None declared |
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Kathy Sipple, Caregiver Detroit, MI 48202
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My 38-year old sister was just diagnosed with Locked-In Syndrome. She, like Nick, has been a very active person and I'm looking for any advice on how to help her at this time. I watched the movie "The Diving Bell" a few months ago before any of this happened and was completely amazed by the man's story. I'm amazed by Nick as well. I would definitely be interested in receiving information about the low blink alphabet or any other tools available for communication. My heart and prayers go out to all who are living with Locked-In Syndrome and their caregivers too. We all need patience and perserverence to help us communicate with one another. Competing interests: None declared |
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Hugh Mann, Physician Eagle Rock, MO 65641 USA
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The locked-in syndrome is more than just a brainstem stroke with quadriplegia. The suffering and courage of locked-in patients has captured the public’s imagination, because we can all identify with such patients. We realize intuitively that the locked-in syndrome is a metaphor for the loneliness, helplessness, and hopelessness of life. With few exceptions, we are all “locked- in” bad jobs, bad relationships, bad marriages, and bad financial, legal, or health problems. Let’s dedicate ourselves to finding the key to opening all locked-in states. Competing interests: None declared |
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Odette Longo, PA Malta MRS 1545
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www.mlongo.net excellent source of information for locked-in patients sorry re yr sister... my husband has been locked in for 8 yrs now (since he was 38) Competing interests: None declared |
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Kathy Sipple, Supportive family member Northville, MI
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I posted a few months ago about my 38 year old sister who was diagnosed with Locked In Syndrome. I am happy to report that the doctors in this case were mistaken, as she has begun to recover use of her limbs and has even begun to talk again within the past week. We expect a long road (possibly several years) for her recovery, but I think she will reclaim many of her previously lost abilities with continued rehabilitation work. I will continue to pray for everyone on this site who has been touched by Locked In Syndrome and am hopeful that research will continue for ways to help. Bless you all. Competing interests: None declared |
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Holger Schnaak, Logistics Melbourne, Australia
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Hello Nick Thank you for your story. Please don't give up and just say to yourself 'Listen to your heart'. there is nothing else in the world anyone can do but listening to your heart. We are one big family. There is also a song by the band Roxette called 'Listen to your heart' . Listen to it over and over again and it will make you feel better. Just do it, All the best Yours Holger Competing interests: None declared |
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sankaran kishnamurthy shruthi, physiotherapist singapore-168955
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i have a client with locked in syndrome. am really working on him and the client has already learnt to express yes or no with head nodding movements and winking.i want to know in detail about the low blink system and various other systems if available to maximise the potential of the client. am a physiotherapist. Competing interests: want to know in detail about the low blink system and other system if available. |
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Sondra A. Balouris, Instructor University of Pittsburgh
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This article may be of interest to Mr. Chisholm and his clinicians. http://cordis.europa.eu/ictresults/index.cfm?section=news&tpl=article&BrowsingType=Features&ID=90668 Regards, Sondra A. Balouris, MS, MPT
Competing interests: None declared |
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