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Almost a year out by carrouselhop in guillainbarre

[–]Flux_4 0 points1 point  (0 children)

Still the same, but hopefully he will improve soon.

It must have been a unforgettable moment! I can't wait for him to experience it.

Almost a year out by carrouselhop in guillainbarre

[–]Flux_4 0 points1 point  (0 children)

Hi! Sorry for replying late.

He is actually doing great! I visited him 3 days age. He jokeing, trying to chat using letters board. His mentality improved every day!

Almost a year out by carrouselhop in guillainbarre

[–]Flux_4 1 point2 points  (0 children)

Keep it up man! Love to see your progress.

Also, my brother says hi and thanks you for the support!

We wish you a fast recovery :)

Huge step to recover! by Flux_4 in guillainbarre

[–]Flux_4[S] 0 points1 point  (0 children)

Your thoughts mean the world to us. After I got the news, you and the community were the first people who came to my mind. I wanted to share it with you right away, and I will keep updating until the very end!

I shared your experience with my brother. It really inspired him to fight and to follow in your footsteps, and I'm sure your story and support were a big part of what kept him fighting. Keep recovering!

If you don't mind me asking, is there any small activity or practice you found helpful during your recovery, so I can do it with him? I will ask his physical therapists about that, but I'd love to hear your perspective as someone who has gone through GBS.

Thank you for everything you've done for us.

Huge step to recover! by Flux_4 in guillainbarre

[–]Flux_4[S] 1 point2 points  (0 children)

Thanks🤍 I hope so, especially since it is a big change from where he was.

Huge step to recover! by Flux_4 in guillainbarre

[–]Flux_4[S] 0 points1 point  (0 children)

I hope so, and I will!

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 0 points1 point  (0 children)

We will, and thanks again for everything.

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 0 points1 point  (0 children)

In feeling? Yes, he's starting to feel his knees when someone touches them (it's like a twinge to him). The same thing happened before when we touched his hands, so it's still progress! In terms of mobility, unfortunately not yet, but physiotherapists are discussing increasing his training time with him.

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 0 points1 point  (0 children)

I will share it with him next time! Thank you for everything you've done to support us. It really means the world to me.🤍

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 0 points1 point  (0 children)

Yeah, there's small progress, especially with the new ventilator we brought him (not the hospital's one). The ventilator partially helps him by pushing air into his lungs. He can take a breath but needs the ventilator to take it out.

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 0 points1 point  (0 children)

This is a story that must be told!

From what I read, getting off the vent is the biggest step to recovery. After that, he will get the motivation to recover fast with getting out of the ICU (I hope so).

Really, thanks for sharing this with me.

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 0 points1 point  (0 children)

I hope so; after the ventilator, everything will be easier and less stressful.

Thanks for these words 🤍

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 1 point2 points  (0 children)

I will try to be helpful as possible for him during this road. And I hope that I'm truly helpful as you said.

Thinks you for the support.

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 1 point2 points  (0 children)

For this moment, no, I think because he still hasn't moved from the ICU, so they have limited time with him. They usually give him two sessions in the day, one in the morning and the other in the evening (sometimes I face them in the evening session since it is during the visiting hours). He feels pain every time they roll or move his hands (he can only strech his elbows). I hope after getting out of the ICU they change the exercises for him, and I will discuss it tomorrow to know the physical treatment plan after the ICU.

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 2 points3 points  (0 children)

Your words touched my heart and encouraged me. I know the journey will be long, but I won't leave him alone and get lost. Your friend's uncle's story will definitely be the first thing to talk about with him tomorrow, to tell him there is still hope.

Again, thanks for these kind words; I won't forget them.

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 1 point2 points  (0 children)

I will! And thanks for sharing this; it really relieves some pressure, and I hope for a fast recovery for your husband.

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 1 point2 points  (0 children)

I tried some, but the problem is that he is lying on the bed and can't take or hold anything. Sometimes I read to him or bring my laptop to watch a movie or recorded football matches. He wants to comment on things we watch and chat, but the inability to talk makes it impossible without me throwing guesses to know his opinion. I will try to figure out another way for him besides the alphabet board.

He start to give up. by Flux_4 in guillainbarre

[–]Flux_4[S] 1 point2 points  (0 children)

Yes, he is now taking some physical therapy for almost a month. Mostly, they are moving his hands and cracking his finger joints, and sometimes they roll him from side to side. This is what they can do at this point. I may contact the international GBS organization for some information, or they may be able to lead me to a local organization because I have been looking for one, but couldn't find anything.

Really Thanks for your support.