Locked-in Syndrome

[Pandorag]

Some of you know what we are going through, and there has been some development in the last week that give us hope. As I said in another post, he is able to communicate with eye movements. He is less communicative these days, as he is working very hward mentally to regain some abilities. At least, when I asked him if he was focusing more on himself, he answered "yes" with his eyes.

Since last week, Fred was declared able enough to start breathing through his mouth and nose. He has been breathing with the help of the tracheotomy and a respirator, but became sufficiently able to breath on his own through the tube, and now, through regular airways. He has been fed small amounts of thicken liquids, and today, had some yogurt for the first time. That means he is able to swallow on his own and it's not going in his lungs.

Also, he gave us quite a surprise last week when he moved his right foot on his own. We are being told since the beginning that there are very little chance that he would move again some day. Well, after I learned from his sister about his foot, I visited him in the afternoon and I was quite shocked to discover that, in fact, he was able to contract his thigh muscles to move his entire leg.

We are able to tell that his right side is getting better and better as time goes by. I have never encountered such a will to live, I find it quite amazing. I am in awe.

He might go to rehabilitation sooner that expected, at least I hope so.

If you want to know more about the locked-in syndrome:

http://en.wikipedia.org/wiki/Locked-In_syndrome

National institute of Neurological disorders and stroke
http://www.ninds.nih.gov/disorders/lockedinsyndrome/lockedinsyndrome.htm

I don't like most of the doctors' attitudes. We read about cases who have regained a lot of abilities after the stroke, some are even walking and talking. I understand though, most have never seen a case like Fred and they never will again in their careers, it's too rare. Also, Fred's case is acute. He has yet another lung infection, but his progress are incredible.

If you have the chance to watch The diving bell and the butterfly, it's a beautiful movie that depicts really well the situation.

[deezelboy]

That's excellent news, Pandorag, and an amazing will to live he has.

[beckmen]

Is something like this a possibility to allow for more communication as he recovers?

http://www.eyegaze.com/applications/disabilities-solutions/

[Pandorag]

Is something like this a possibility to allow for more communication as he recovers?

http://www.eyegaze.com/applications/disabilities-solutions/

Yes, it is a possibility, but I don't know what will be implemented for him or when. Many tools exist.

EDIT: A video sent to me by my sister about a month ago. She got it from the Neurology centre in Montreal.

<a href="http://www.youtube.com/watch?v=ZwuMg0FsKzs" target="_blank">http://www.youtube.com/watch?v=ZwuMg0FsKzs</a>

[Pandorag]

Last week was an incredibly tough week. Fred reacted to something and his heart rate went through the roof. They had to "reopen" his tracheotomy (even though it was never really shut) so he could breathe through it and help him rest while he recovered from whatever he had and from a bronchitis. He felt really down we didn't know if he wanted to continue fighting. So I waited to see him the next day, I napped the entire afternoon. I was apprehending his mood, I was scared he wanted to die.

When I entered his hospital room, he was very awake and he moved his left foot this time, and then he smiled at me... for the first time!!! I was ecstatic!!! I laughed and cried.

His recovery is so quick, it's almost miraculous. Though, I do not wish to think it's a miracle, I believe Fred is that strong. Today, his temperature was down, the bronchitis seemed gone, and Fred moved his index finger. I heard tonight he moved his pinky finger for his sister.

I mean, everything I read about this type of stroke is about patient recovery very little mobility.

I wonder how far Fred will be able to go... How strong can his mind be? We are into the unknown, it's thrilling and very scary at the same time. How does he even find pathways to move anything when he is not supposed to be able to move anything?!

EDIT: Typo

[deezelboy]

When I entered his hospital room, he was very awake and he moved his left foot this time, and then he smiled at me... for the first time!!!

That is amazing! Many thanks for sharing.

[Pandorag]

That is amazing! Many thanks for sharing.

Yesterday, I wasn't sure, but his sister confirmed it, he started moving his fingers of his left hand. Very slight movement, but it's there and he does it on demand. It's all very thrilling.

[LargeLeader]

This is amazing stuff to hear, Pandorag. That's got to take some fighting spirit.

[Pandorag]

I've been scared shitless since it happened.

[Pandorag]

He passed away early this morning...

[deezelboy]

I'm really sorry to hear that, Pandorag. 

[PredBabe]

I'm so sorry, Pandorag.

[Pandorag]

Thank you. I have a hard time coming to terms with it all. Then again, it wasn't a life for him... not talking, not moving, no way to express his feelings... He used to be so full of life, we had so many projects, we loved each other so much.

Now, I feel I am in deep shit. I was made the Liquidator by him, he gave me the house but everything goes to his children, which is totally normal, but his eldest, now angry at the whole situation, thinks I want to screw him over. There is barely money involved, the house needs extensive repair. I feel totally lost about his anger towards me. I hope he will calm down... I stayed because he and his siblings asked me to ... now, I just want to run. I have tons of support, but this is a stress I could live without.

[beckmen]

I hope you get through this with minimal emotional pain, Pan. Not a whole lot I can do to help from here, but if you ever need anybody to talk to feel free to PM me.

[Pandorag]

I hope you get through this with minimal emotional pain, Pan. Not a whole lot I can do to help from here, but if you ever need anybody to talk to feel free to PM me.

Thanks Becks!

We had a long talk last night. They are scared to be alone, they fear I will leave them with nothing. Well, it turns out that it's their mom who is trying to persuade them that I will abandon them and keep the money. She has been harrassing them, she forced her daughter to get an appointment with a lawyer!

Now that I've slept on all of this, it occured to me that if she succeeds, they will lose everything, including me. I have never seen such bitterness in all my life.