Comments on: Locked-In Syndrome

By: Charles Bradford, E.E. (ret) in Arizona, USA

Charles Bradford, E.E. (ret) in Arizona, USA — Sun, 16 Aug 2009 17:12:00 +0000

I am ready, willing and able to provide advanced single-switch communication-aids at no charge.
Contact info: “chasbrad@vtc.net”;
tel: 520-826-4201 (here it’s GMT less 7).

By: Teresa Balzarano

Teresa Balzarano — Sat, 01 Aug 2009 14:21:59 +0000

My husband has locked in syndrome on 12-31-07 New year eve day time. We have two little girls it happen when two weeks into his 51 birthday.MY GIRLS WERE 7 AND 10 YEARS OLD.I want to help him but how? I like research done, Some one help us life has stop for us but we still have hope! THANKS Teresa ,Joe and girls

By: linda wheatley

linda wheatley — Mon, 29 Jun 2009 14:46:20 +0000

my daughter michelle aged 25 has locked in syndrome since august 2008 she has 2 young children aged 3 and 16 months old it has been very very hard to come to terms with this, her partner is marvelous with her and said he wants to look after her when she does finally come home. she has a trakki in which the hospital are deflating for two hours a day. no movement at all in her arms or body but her head is getting stronger i just wish there was somebody out there who was doing more research into this terrible thing

By: Martina Maguire

Martina Maguire — Fri, 27 Mar 2009 17:03:52 +0000

My daddy took a brain stem stroke with locked in syndrome 12years ago aged 45. My mum has looked after him at home with the help of carers since.
It is such a horrendous condition, which all of us especially my father still struggle to accept. Although during the past 12years my mother & father have been inspirational in the way in which they have coped. Despite being so severely disabled dad has still continued to try and keep life as ‘normal’ as possible. He goes to restaurants for family meals and whilst being there is spoon fed, has gone on family holidays to the canaries, weekends away in hotels (mattress, hoist & even bricks to raise the bed of the floor all included)!! Unfortunatly this past year daddy’s health has started to deteriorate.

By: Dan

Dan — Fri, 17 Oct 2008 22:13:32 +0000

Dear Laura,
i was Locked in, march 03, at age 40, i was given the choice to live or die, i chose life, would i again, (probably not) i just started walking without a cane, this past month, 6 years later, everything i do is robotic, but can do most anything slowly, 2 young kids, expecting a miracle everyday, and not being disappointed if its not today, (thats my secret), and never give up

By: Ann Carter

Ann Carter — Sun, 22 Jun 2008 14:16:55 +0000

This web site says it all about what happend; http://www.helpdedra.com

We are hoping to have a electrode system when we can find the company that makes them which may be helpful .
Sincerely
Ann Carter

By: Wilma Crawford

Wilma Crawford — Fri, 09 May 2008 23:50:00 +0000

Hi I am writing about my husband who had a brain stem stroke in September 2006. I feel that he is doing very well, but he doesnt . My husband has great control of his head movements, he is able to hold it up very straight and also move it from side to side. He als is able to move his left arm up and down and also tries very hard to stratch his face and nose. He has totally lost the will to live and I dont know what would be the best thing to do to help him to come to terms with this. I have carers with me 24 hours a day helping to look after him and he does normally wants to be left in his room with the blinds and curtains shut at all times and also door shut. My husband is able to communicate very well by attempting to talk and also by using an alphabet chart. I am really proud of the way he has improved, but because of the lifestyle he had before the stroke he no longer wants to live and has felt like this since he took the stroke. He can be very very moody it is like turning on a switch and his form just changed. What advise would you give on how to further help him
to make things alittle easier for him and make him get interested in something. He was a bodybuilder fitness guy before he took ill.

Many thanks

Hope to hear from you very soon

By: Lindy

Lindy — Tue, 29 Apr 2008 19:35:52 +0000

My 43 year old sister suffered a brainstem stroke on 3/15/08, with four more strokes occurring by 3/17/08. She was completely paralyzed and left with locked in syndrome, communicating solely through one blink for yes, two for no.

Several major hospitals refused to accept her, citing lack of further treatment and that she would most likely not survive transport. My 21 year old nephew, her next of kin, was asked to consider termination of life support; something my sister was asked numerous times over the course of three days.

Through blinking, she responded affirmatively each time. Her choice is one I honor and will never judge as persons who’ve not embodied this rarity do not possess that right.

Her life support was terminated at 4:30 p.m. on March 21, Good Friday. Despite depictions in Lifetime movies, death does not come swiftly. She held on to life until 10:00 p.m. Easter Sunday night, such is what happens when seemingly strong and healthy people are struck down in what should be the prime of life.

I will remain haunted by her tears and the look in her eyes, the depth of fear she felt is unfathomable. That final week of her life was the first time in seven years we’d connected beyond random phone calls and emails. The pain and joy of reconciling a past in a present that yielded a very limited future is indelibly etched upon my being, as well it should be.

Several people on the morning of March 21 tried unsuccessfully to rouse her from rest. I remembered a photo tucked in my wallet for 20+ years and recited it’s history as I held it in front of my sister’s face: “Pat, look, this was mother’s favorite picture of us, taken in April, 1969. You got to choose the dresses, mother said it was probably the last time we ever smiled together.”

My sister with every fiber of her being opened her eyes wider than I have ever seen. Streaming tears notwithstanding, I know we smiled together on that day too.

Now she smiles over me, her son, his son, and my daughter. And that is the picture I choose to remember.

By: Lorna Elwick

Lorna Elwick — Sun, 02 Mar 2008 15:22:35 +0000

i am very interested in your comments about the notion that people who have suddenly become paralysed being less able to adapt to their new condition than those who have become paralysed gradually. I have incomplete locked-in-syndrome, becoming ill in June 1993. From being totally locked in, I can now move my head. swallow, suck liquids up through a straw, breathe unaided and can communicate in various ways including shaping letters or words with my mouth. So, quite a lot. It would appear on the surface that I have adapted to quite a large extent However I am dissatisfied with my lot in life. I can do lots but my care takes ages and I easily get tired so I don’t work. It’s rather unsatisfying! it’s difficult to see why I am here.

By: Bj�rg L�ge

Bj�rg L�ge — Sun, 17 Feb 2008 19:36:32 +0000

Dear All,

My father, who is a LIS patient, has now been given
a medicin called Zolpidem every day since January 1, 2008.
He confirms that the following has improved after
taking the medicin:

- he has much better control of his tongue and feel
that it is much easier to swollow.
- he has much more control of his eyes and view to
both sides
- he feels more alert
- he sais it’s easier to communicate, that he feels
more alert in his head too
- he has no longer headackes
- we can now move is arms much more than before
and also he feels that his body is more moveable

He got his stroke for approx. 1 year and lung infections have almost been there all the time, but
after taking Zolpidem he did not get a lung infection for almost 1,5 months. We think this is so, because he has much better control when swollowing.

I really recommend this medicin.

After all, do you have anything to loose in trying?