Week one

Hi everyone, good morning,

I'm new to chat groups, and new to HIS, so I hope I'm doing this correctly. My Dad is 6 days into this terriblness. Last Sat, he felt a little punky, today he's on full life support, and paralyzed.

We talk to him every day, trying to think of things that may be going thru his mind, hopefully easing this a bit. We believe he hears us, blinks his eyes when we ask him to and such.

My question for any soul that has been there is, what is he feeling? What should we be asking? I recently read that he may be having bad dreams, is there anything we should be doing or saying that might ease his mind?

Big hugs to all of you, so hard for him & for you. The hardest thing for your Dad probably is not having people understand when he is in extreme pain or discomfort. So often it could be easily helped if he could tell you and if you could figure it out. When I was on life support I found it so upsetting when people would rush to figure out what I wanted instead of going slow. An OT came up with a list of ways to ask me what was wrong or what I needed starting with body parts and a blink once for yes twice for no response from me. That helped when people went slow, watched my reaction carefully.

For example. Are you in pain

Is it your head, eyes, ears, etc.

do you need to be moved

And so on

Hope this helps.

A month from now this worst part of your nightmare will feel a bit better. Once the breathing tube is out snd he can communicate it will be better, hang in there! He can do it, I am 65 and am 6 months into being back to doing everything except with some nerve pain/numbness. Praying for all of you.

Thanks for your responses, what a help to know we're not alone, yesterday was day5 of ivg, and this morning, he is responding by nod, moving toes, squeezed my hand. So grateful. He nodded as to "pins and needles" feeling, but shook no to pain question. Had trach put in yesterday, good to get vent out, hopefully feeding tube will be moved fro. Nose to belly soon.

Thanks so much.....he's 78, healthy and strong till now.

When I was comatose yes I did have bad nightmares and alwaysy burning up. I did do the blink response once I was out of the coma. Then when I was able to move my hand and finger. I point to different saying printed out on a sheet of paper. Ie: need pain meds…cold or hot…turn tv channel…turn tv up or down. Etc…

The tv I was frustrated the most with because the nurse would turn to what they wanted not what I wanted. Until I got the papers list then the problem was solved…hehe

Stay positive, keep the faith God well be good. He was with me when I also went straight line twice through this ordeal. God bless. Be in our prayers…

Oh Chuck and everyone, thanks for reply!!! Dad also seems to be hot, nurses cover him, we uncover him. Except for 2days, he's been able to respond with blink or nod, says he's not in pain, (by nodding or shaking head, we're getting good with yes or no questions)- he's kind of squirming around today, I think of restlessness all over. I am imagining nerves starting to refire.



Gayleen said:

Big hugs to all of you, so hard for him & for you. The hardest thing for your Dad probably is not having people understand when he is in extreme pain or discomfort. So often it could be easily helped if he could tell you and if you could figure it out. When I was on life support I found it so upsetting when people would rush to figure out what I wanted instead of going slow. An OT came up with a list of ways to ask me what was wrong or what I needed starting with body parts and a blink once for yes twice for no response from me. That helped when people went slow, watched my reaction carefully.
For example. Are you in pain
Is it your head, eyes, ears, etc.
do you need to be moved
And so on
Hope this helps.
A month from now this worst part of your nightmare will feel a bit better. Once the breathing tube is out snd he can communicate it will be better, hang in there! He can do it, I am 65 and am 6 months into being back to doing everything except with some nerve pain/numbness. Praying for all of you.

Gayleen, very helpful......I'm that person that would rush in and try to fix everything, I will heed your advice, slow down and "listen" to his responses.

Sounds like you are an amazing woman, good luck !

Hi Bekki and sorry to hear about your Dad. Here is a great example of a communication board you can use with your Dad. Basically point to the phrases, letters, blink once for yes twice for no or something similar. I have used these several times when visiting GBS patients. I have had CIDP since 2003, message me anytime if I can help. Here is the link http://www.pinterest.com/pin/301600506268812510/

Thoughts and prayers are with your Dad and all of his family and friends.

Jerimy Schilz

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Oh, my gosh, you described my patient. It seems so hopeless at first, then by some tiny little miracle, a bit at a time he came back. He is still not 100%, but I see improvement each time I go in to massage his hands, fingers, toes and feet. Just keep reassuring him and be as positive as possible. My heart goes out to you Bekki. My patient, does not remember a lot of the first days, only that he was out of it. He was on a breathing tube, feeding tube. Now three months down, he can move his upper torso, eat, drink and speak. We are praying that he will continue, Same for your dad.. It is a hard thing to watch. .



bekki said:



Gayleen said:

Big hugs to all of you, so hard for him & for you. The hardest thing for your Dad probably is not having people understand when he is in extreme pain or discomfort. So often it could be easily helped if he could tell you and if you could figure it out. When I was on life support I found it so upsetting when people would rush to figure out what I wanted instead of going slow. An OT came up with a list of ways to ask me what was wrong or what I needed starting with body parts and a blink once for yes twice for no response from me. That helped when people went slow, watched my reaction carefully.
For example. Are you in pain
Is it your head, eyes, ears, etc.
do you need to be moved
And so on
Hope this helps.
A month from now this worst part of your nightmare will feel a bit better. Once the breathing tube is out snd he can communicate it will be better, hang in there! He can do it, I am 65 and am 6 months into being back to doing everything except with some nerve pain/numbness. Praying for all of you.



myrna said: Gayleen, I am not sure I am doing this right, I wonder if you had any movement in your hands and feet, at first? Where were you to most effected? It sounds like you are coming along. How long to get movement in the extremities? I sure home my patient will be back as far as you have come in six months. Thank you so much for posting.



bekki said:



Gayleen said:

Big hugs to all of you, so hard for him & for you. The hardest thing for your Dad probably is not having people understand when he is in extreme pain or discomfort. So often it could be easily helped if he could tell you and if you could figure it out. When I was on life support I found it so upsetting when people would rush to figure out what I wanted instead of going slow. An OT came up with a list of ways to ask me what was wrong or what I needed starting with body parts and a blink once for yes twice for no response from me. That helped when people went slow, watched my reaction carefully.
For example. Are you in pain
Is it your head, eyes, ears, etc.
do you need to be moved
And so on
Hope this helps.
A month from now this worst part of your nightmare will feel a bit better. Once the breathing tube is out snd he can communicate it will be better, hang in there! He can do it, I am 65 and am 6 months into being back to doing everything except with some nerve pain/numbness. Praying for all of you.

Hi Myrna, I was on a ventilator, without movement trunk, arms legs for two months, I had an awesome Physio when I was starting to be able to pull myself sideways in the bed and was quickly given every chance to get moving with total support and a space like contraption that got me upright with support and sitting in the wheelchair etc. it felt horrendous for weeks but totally paid off. From there I slowly developed strength to stand using a walker that braced me up at shoulder height and everyday involved trying to do as much as I could to get muscles moving with loads of rests in between. GBS can go in reverse when you overdo things so small steps more often with breaks helps. Lots of nerve pain persisted throughout but becoming mobile was my goal and the hard work and support helped immensely. Be kind to yourself, celebrate daily can do’s and believe with all your heart that
"This too shall pass" you can do this, fight on and best of luck. Praying for you!



myrna said:



myrna said: Gayleen, I am not sure I am doing this right, I wonder if you had any movement in your hands and feet, at first? Where were you to most effected? It sounds like you are coming along. How long to get movement in the extremities? I sure home my patient will be back as far as you have come in six months. Thank you so much for posting.



bekki said:



Gayleen said:

Big hugs to all of you, so hard for him & for you. The hardest thing for your Dad probably is not having people understand when he is in extreme pain or discomfort. So often it could be easily helped if he could tell you and if you could figure it out. When I was on life support I found it so upsetting when people would rush to figure out what I wanted instead of going slow. An OT came up with a list of ways to ask me what was wrong or what I needed starting with body parts and a blink once for yes twice for no response from me. That helped when people went slow, watched my reaction carefully.
For example. Are you in pain
Is it your head, eyes, ears, etc.
do you need to be moved
And so on
Hope this helps.
A month from now this worst part of your nightmare will feel a bit better. Once the breathing tube is out snd he can communicate it will be better, hang in there! He can do it, I am 65 and am 6 months into being back to doing everything except with some nerve pain/numbness. Praying for all of you.

Well, I was paralyzed too - and came out of it. I believe your dad will too. It seems to me that everyone does. Some have some problems, but nothing too terrible that I know about. What is he feeling? I do remember one evening in the hospital sobbing ... and some lady in the other bed was saying to me "it will be ok honey". I do recall my legs cramped a lot - just hurt. Your dad did nothing at all to cause this - it just happens. I had a cold and I also had tooth work done, I understand those are 2 of the triggers. He will be told to not get a flu shot - that may trigger it. I understand there is only a 5% chance that it will come back. Everyone that has ever had Guillian Barre gets better. Just be patient. Nothing you can do - just be supportive. Really, he will get better - I have heard about these stores for 20 years ... and they all recover. I had GBS in 1988. About 20% have some minor problems. Nebretta

Thank you for the encouragement.......

I was in the hospital 30 years ago w/ GB paralyzed from the neck down. I met a young lady named Laurie who was in ICU. They had to tape her eyelids shut because she couldn't close her eyes at night. It doesn't affect your mind! Know that your Dad can hear everything.... He just can't respond to them. Laurie made it thru all of it. and was walking again after a year I believe. I am back to normal again except for burning and tingling. It's better than not being able to walk.

Update on my Dad, he is improving every day. He can move arms and legs, mouth words to us. He is receiving an additional 2 days of ivig, doc didn't like the numbers from blood test, but I didn't understand. Dad is hungry but has trach and feeding tube, so not yet. Breathed without help for 15 or so minutes even. He seems to be making big strides/!

That is awesome, he will keep improving! Yeah and great job for you wonderful supporters and to your Dad for working hard to improve.



bekki said:

Update on my Dad, he is improving every day. He can move arms and legs, mouth words to us. He is receiving an additional 2 days of ivig, doc didn’t like the numbers from blood test, but I didn’t understand. Dad is hungry but has trach and feeding tube, so not yet. Breathed without help for 15 or so minutes even. He seems to be making big strides/!

I am amazed at how fast he is responding, almost as fast as he went down hill. I imagine he'll have plateaus, but I'm so hopefull about what I've seen. Thank you Gayleen, hope you're having a good day!

Yes thank you, it was sunny here and I celebrate each day that I am on the move enjoying everyday things just like your Dad will soon. You take great care of you. Sending healing and strength prayers to all of you!

There is little you can do to relieve his anguish. Be with him as much as possible because he really doesn't want to be alone. Talk to him whether he connect knowledge and are not and let them know you love him and that you are there for him. When I first had GBS (February 27, 2004 at the age of 60) I was walking one day and paralyzed from the neck down the next day. 2 days after the paralysis I was put on a feeding tube. 2 days later I was on a vent where I remained for most of the next 4 1/2 months. Fortunately, I knew what was going on but I couldn't communicate with most people. My daughter, a young mother of 2 small children, was able to do some lipreading and was my only source of communication. My wife and my son had a lot of problems communicating with me.
I was put in a drug induced coma for about a week because I was mentally exhausted. My doctors could see what was happening to me and sometimes they told me what was going on and other times they didn't. The hardest part was not knowing. The 2nd hardest part was being left alone by my family. I knew they had to go home to sleep and had to go to work but the loneliness was almost unbearable. Don't get me wrong, there was lots of hospital staff around all day but I needed my family. If it wouldn't have been for them, I would not be alive today. I spent a total of 18 months in ICU, Critical Care, Subacute Care, Rehab and Advanced Rehab. They were with me all the way.
I've been paralyzed now, a little over 10 1/2 years and I'm 71 years old. My wife is now retired and my primary caregiver. My daughter lives a little more than a stones throw away from me and my son about 5 miles. They are both extremely helpful and I don't know what we'd do without them. Only one of my grandchildren remembers seeing me walk. The other 5 only know me in my wheelchair.
I don't know if this will be helpful to you or not, but for me I needed my family and they helped me.

Good luck.

Good luck