My daughter's GBS started from campylobackter on 19th January. Although she can now close her eyelids and facial muscels are working so she can speak, she is totally paralysed. She spent 7 weeks in ICU and battled through all the problems with a trachea and feeding tubes and has now been moved into a neuro rehab unit - which is superb, however, she is increasingly alarmed that she is not recovering any movement to any limb. I think the only thing keeping her so positive is her intention to sue the provider of the chicken that caused the trouble!
I'd like to pass on to her any positive experiences of you folk who might have suffered from total paralysis.
It is such a long process, and not a straightforward one. My case was mild compared to your daughters, and I had an acute exacerbation after two months (a lot like a relapse, but technically different) that has put me back in the hospital. I'm typing from my hospital bed now. It's important to remember that on a good, restful day the nerves and sheath will repair about a millimeter. And it's got a lot of millimeters to go. Rome wasn't built in a day! Try and be patient and positive and celebrate the progress as it comes. It will come.
Also, please prepare yourself and your daughter for the weakness that comes. I was paralyzed from the waist down, and was so over-the-moon thrilled when I was able to move my legs again. But there is moving your limbs, and then there is using your limbs. It's a long, frustrating process where you ache to just have "normal" back - but eventually it will come. I am thrilled to be able to walk with a cane, and I yearn for the day when I can keep up with my kids again and have our dance parties in the living room.
I'm too early to have a full recovery story - I'm sure others will be able to provide that kind of encouragement. But from early on, and through rehospitalization - I can tell you it does get better. I'm so happy that she is out of ICU, in a great unit, and with a loving family. Stay strong and stay patient.
I had a similar course as your daughter. i was totally paralyzed for a few months too. It is extremely frustrating not being able to move, scratch an itch or do anything at all for yourself. But the probability that she will recover is extremely positive too. But it is a snails-pace slow process especially when you are a prisoner in your own body.
You will see progress for her much quicker than she will. You have to remain as positive as you can be. One thing to be sure is to make sure she wears those God awful boots to prevent foot-drop. No matter how much she complains about them when she starts getting sensation back, she HAS to wear them. I know one lady personally who did not wear them enough and she has a bit of foot-drop on one foot. Massage her hands feet and legs. Wipe her face with a washcloth. Brush her hair. Those things seem so small, but I remember them the most.
When she starts doing more physical therapy keep encouraging her. If she is like most of us, she will want to be back to normal immediately and will get frustrated with the slow progress. Remember that GBS stands for Getting Better Slowly! Keep the faith.
Thank you for the reply, I like the Getting Better Slowly and will pass that on to Karen. She managed to sit upright without support for almost 5 minutes so her spine seems to be improving doesn't it? She now has about 1 hour therapy a day until she feels her shoulders can't take any more, I wondered if ordinary massage would help if I arrange for a weekly session?
She's okay about wearing the velcro boots and she also has hand braces, the staff are wonderful and have been turning her in bed and to their credit, after 4 months in bed, she has no bed sores but I'll bear in mind the little things like not having any control over her temperature in bed so her father and I will ask if she wants arms outside covers etc. Thanks again, continue with your own recovery.
How long ago did you get GBS? Karen was introduced to the only other sufferer in our area of England. He was 70 when he got it 4 years ago and has spent about 2 years in hospital . He tried to reassure her that his recovery was delayed as he couldn't have enough therapy in the early stages because he had other respiratory problems. She said she would rather not have met him. I'm going to print out yours and TLC's replies and take them in to her. We are so proud how well she coped initially in ICU when she had no way of calling for help not being able to speak or press a call button We have seen an improvement since she was transferred to a flat with doors to a peaceful garden. Perhaps time for her to rest is as important as visting by ourselves and her partner??
Geoff is in his 70's and I'm pretty close myself, we've seen a lot of life but have never even heard of this terrible illness and have only witnessed this degree of incapacity of people in West Africa who suffered from polio etc. How can I bounce upto her bed and say everything is going to be fine, 1mm a day?. BrokenBear said:
It is such a long process, and not a straightforward one. My case was mild compared to your daughters, and I had an acute exacerbation after two months (a lot like a relapse, but technically different) that has put me back in the hospital. I'm typing from my now. It's important to remember that on a good, restful day the nerves and sheath will repair about a millimeter. And it's got a lot of millimeters to go. Rome wasn't built in a day! Try and be patient and positive and celebrate the progress as it comes. It will come.
Also, please prepare yourself and your daughter for the weakness that comes. I was paralyzed from the waist down, and was so over-the-moon thrilled when I was able to move my legs again. But there is moving your limbs, and then there is using your limbs. It's a long, frustrating process where you ache to just have "normal" back - but eventually it will come. I am thrilled to be able to walk with a cane, and I yearn for the day when I can keep up with my kids again and have our dance parties in the living room.
I'm too early to have a full recovery story - I'm sure others will be able to provide that kind of encouragement. But from early on, and through rehospitalization - I can tell you it does get better. I'm so happy that she is out of ICU, in a great unit, and with a loving family. Stay strong and stay patient.