A friend of mine has been diagnosed with this syndrome a few days ago. He lives with his wife and 6 month old baby in Sweden. His wife is absolutely exhausted with running between him and the baby so I will be taking 10 days off work and flying there to help them out. Meanwhile it seems both him and his wife are extremely anxious since he is just getting worse day by day. We all know that this is natural but still... He is also very frustrated and very worried all the time about his family and specially his wife. I think he needs his wife by his side more, for emotional support.
I would really appreciate it if any survivors here would offer some tips about how to cope while being hospitalized and unable to move. Also was there anything that helped you emotionally during that time? I can imagine that he is very bored with nothing to do all day, he is even too tired to be able to read. What can I do to help them more? Any tips would be appreciated. I will mostly be spending my time in Sweden babysitting, I think, so my friend can stay at the hospital with her husband but I would like to be able to help them as much as possible since they don't have any family there.
And also if anyone has a personal word of encouragement for him that would also be very nice :) His name is Farrshiid ( I spelled it wrong on purpose for patient confidentiality). We can print out the messages or read them out to him. I really really want to help keep his spirits high. I hate to see him getting more sad and slow everyday.
How is his condition like? Unable to move meaning totally paralyzed or partial? During my bout with GBS, I found praying to God to be my source of solace. Trusting in the Lord, the great healer is a great comfort. In May 2013 I was totally paralyzed from my head to my toes. By Jan 2014 I was back at work. I had the worst case scenario a GBS patient would dread. Not only the myelin sheath of my nerves were damaged, but also the nerves axon. My neurologist told me it would take at least 2 years before I could go back to work. My neurologist was blown away how quickly I recovered. Also determination to get better is key to recovery. Therapy may be difficult but is essential to recovery. If you give up and don't put in the effort, then don't expect to see results. Let Farrshiid know the silver lining about GBS is that he will recover.
For you, stay positive. Read up on GBS. A GBS patient can be very demanding. Tell his wife that as the caregiver she also needs to take care of herself. I know I put my wife through hell. Thank God for blessing me with her.
Hi Spencer,
Thank you very much for your reply :)
He is partially paralyzed, he can still move a little in his bed and type on his phone and talk but with difficulty. They have started treatment 4 days ago so I think they have actually diagnosed quick enough. I just hope his condition gets stable before he gets much worse. I will forward your reply to them.
How are you now? Are you completely recovered? I wish you much health and happiness.
Thanks again
Hi shema,
This will be probably the worst time for your friend. It may continue to progress until the paralysis is complete (this was the case with me), and then subside. I was at my worst at about the two week mark. Don't be surprised if they have to insert a breathing/ventilator tube into his throat and feeding tube into his stomach. (I had both of these, and it's pretty common.) I don't want to alarm you with that, it's just a part of this unfortunate condition. It will take anywhere from several months to several years to recover. I was in the hospital or rehab center for 3 months altogether before I came home. I continued to recover little by little until I'm almost "back to normal" now (about 2 1/2 years later). There are residual nerve issues in my extremeties, and fatigue is sort of an on-going thing to deal with. These are very common with this ailment. Your friend will more than likely go on to have a pretty normal life, but he (and his family) will have to have patience, because it takes a while.
As far as what you can do now, just be there and be a friend. Try to keep the patient's wife calm and stress-free as possible (it's really nice that you can go there to take care of their baby). Even if he is completely paralyzed and seemingly non-responsive, he will be conscious and aware of your presence. (Although if they have him on a morphine drip, also pretty common, he will be a little "out of it.")
Good luck, best wishes, and have patience!
Dear LanceB,
Thanks for your kind response and for being straightforward about what one might expect. I wish you complete recovery very soon. I appreciate your advice.
Best regards
Sheema
Hi Sheema,
I'm about 90% back at 19 months since the start of my GBS. Fatigue is still an issue though. Lance and I had full blown GBS where we were totally paralyzed. Yes I too had to be intubated for about 11 days. So yes the worst days may still be ahead of him. But as I mentioned, prayers do help. God Bless.
sheema said:
Hi Spencer,
Thank you very much for your reply :)
He is partially paralyzed, he can still move a little in his bed and type on his phone and talk but with difficulty. They have started treatment 4 days ago so I think they have actually diagnosed quick enough. I just hope his condition gets stable before he gets much worse. I will forward your reply to them.How are you now? Are you completely recovered? I wish you much health and happiness.
Thanks again
Hi everyone,
I just wanted to update you about my friend. Today he felt a little better and sounded much more positive!
I am so so happy :))
The past two days were awful.
Hi sheema, I didn’t see if your friend is paralyzed or very,very numb. Hope he is doing better this is a crazy disease him and his family are very lucky to have such a great friend like yourself. We are all lucky to have friends in our lives such as yourself keep us updated.
Dawn.
Hi Dawn,
His legs are paralyzed and he cant lift his arms. His face is very numb as is his mouth and throat.
Actually I haven't yet been able to do anything for my friend or his wife other than calling them. But a great plan that we have arranged in our group of friends is to take turns to go there and help them out. One friend will be there until the end of next week, then I will fly there on the 12th until the 21st then another friend will fly there and stay for a couple of days and so on. We will just take turns as long as it is necessary. But I am so excited and happy now because he couldn't talk to me yesterday but today he did and he sounded good and said he felt better :) My biggest wish is that he gets to hold his baby and give his wife a hug before the 21st when I have to leave them.
I have so much respect for those of you who have had or are fighting this syndrome. I wish you all health and strength.
Sheema that sounds great.....you all sound like you have a great plan. i to am completely numb leg,arms, face tongue gums teeth, also no feeling in private area when wiping or bowel sensation, thank heavens no accidents. this is a very hard disease i to feel blessed to have my live-in boyfriend and heart to be so caring,loving,and understanding. we are all lucky to have our loving friends and family... all my best
.
Hi sheema, If your friend couldn't talk yesterday, but can today, that's a really good sign. If the progression has been stopped and reversed before he was completely overtaken that's about the best thing you can hope for, and it will probably be a relatively quick recovery. I sincerely hope that to be the case. Best wishes!
Dear Dawn,
I'm sorry to hear how numb you are. But its good that you are not paralyzed. Lets focus on the good :) How long is it since you have started treatment? I hope you start to recover very quickly. Please take care of yourself and stay positive no matter what. I hope you feel a lot better soon.
Take care.
Dear LanceB,
Thank you for your response. I hope so too. I had never heard of GBS before and I was really surprised to see so many people going through this. Human will power is so much more it seems than I ever imagined.
Best regards
Sheema
I was paralyzed from the neck down but thank God no breathing tube or vent inserted. Drs think because I am a singer that it was possible not to have those things. My lungs were fairly healthy until the multiple blood clots. Even then the Drs give credit to being a singer. My heart rate shot up to the 180s when they turned me in ccu. Thought it was gonna explode in my chest.
Now I just have nerve damage to fingertips and toes. Still numb and tingly. Also very tired and can’t tolerate cold or hot weather very well.