I think it is about time I did another blog. A couple of weeks ago I saw a consultant who said that I was doing well and that 18 months is the target time for repair of the mylene sheaf covering the damaged nerves. At the rate of 1 millimetre a day which is only 0.0032808 ft this is painfully slow but there is nothing that can be done to speed up the process. I am learning to live with my hands and mouth in a permanently uncomfortable state and am counting the days to Christmas which will be 18 months since GBS started in the hope that by then things will be much better. The big question is, if all is not normal by then, does it mean that’s it, or does one continuously improve after 18 months?
We are busy with an extension to the kitchen with completely new units which will be fab when all finished and I can sit there and cook and watch TV. Again as my hands are so weak the Christmas deadline is even more important from a cooking perspective.
We have also been meeting up with fellow caravanners who have not seen me since I got GBS but they have been kept informed via my blog. I think they were surprised that I have not changed too much except for my mouth and difficulty in eating anything solid, and that I can walk, albeit only a very short distance. My main blessing is that I can talk reasonably well and laugh and enjoy the company of so many old friends. This month I am meeting up with three of my oldest friends, one I have known since childhood, another who now lives in Australia and the third I met whilst working in Paris in the 1960′s. I will have to brush up on my French but I will enjoy that.
So that is more about us and less about GBS which means I must be getting better, but its ever so slow!
4 comments
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August 9, 2010 at 3:27 pm
Michael Williams
Thank you for sharing your story. I was diagnosed with GBS in March of this year, in June my neurologist changed it to CIDP. I am also waiting for my nerves to repair before I can walk again.
Stay strong!
Michael
September 7, 2010 at 7:58 pm
Christie
Thanks so much for sharing your story. My husband Art was diagnosed with GBS in December 2009. You can read about his story on our blog http://artchristie.blogspot.com/ which is really a story about everything going on in our lives – not just GBS. Ten months later he is walking with a cane and does okay – he still falls especially when he is tired – and he tires easily – and needs assistance with some things. His neurologists wants him working on the walking motion because he has foot drop on one side and only has two of the four motions of walking on that side.
September 20, 2010 at 5:29 am
designsbysachs
My dear friend thru GBS. The day after this Christmas will be 2 years for me. Please know that 18 months is not the end all be all as far as healing goes. While I have met some that never completely recover I have met others that have and taken longer. I will keep you in my prayers and remember that no matter how far you recover in the end you are a Survivor!
Saved by the blood,
Donovan
September 28, 2010 at 8:43 am
maxy
Hi,
Saw this blog today. Its been 10 years for me after GBS. Only thing I cannot do is run as of today. I sweat a lot on my forehead may be a bit of weakness. I do have some residual symptoms but nothing major. Life goes on normally for me. Please be careful not to exert yourself too much in doing excersices, do it as much as your body can take. Swimming is the best after you can move on your own. Contact me on my email if you need to talk. Get well soon.
Regards.