Reply To: Father with Axonal GBS- No change after 3+ months

October 24, 2015 at 6:16 am

Your father’s GBS seems to be quite similar to mine. “Luckily” for me I was unconscious (10/16 – 12/10) during the time I had a trache and pneumonia so I had a later start on the mental anguish he is now going through. My wife tells me that the respiratory doctor was very aggressive. Fortunately his approach worked for me.

On 12/19 I was shipped to a rehab hospital. At that time I could bend my right arm to touch my ear but no other movement. My left wrist was limp and my right foot dropped. I also had extreme difficulty swallowing on my own which required several weeks of therapy to correct. Also, I did not have the strength to change the channel with a remote. The buttons were too hard for me to press. When I was released on 1/24 I was able to take about 100 steps using a walker and get from my wheelchair to either a couch or a car.

On 1/29 I began out-patient physical and occupational therapies which continued until 6/30 for occupational and 7/31 for physical. By 3/1 I was out of the wheelchair and using the walker exclusively. On 4/19 (the Saturday before my birthday) I had the first movement of my left wrist. I can’t be as definitive about my right foot since I was always working it with the walker. Though not perfect it is no longer dropped. By 7/1 the walker was gone and I was using a cane with braces. By 8/15 I was walking (with a noticeable limp) and began drive.

Today, 3 years out (10/15/12) I still limp a bit but I am able to play golf 2 to 3 times a week. I continue to do my therapies for about an hour a day. My left hand remains a bit weak and my right leg aches a bit. I always feel I need to loosen up a bit but can’t quite do it. And the feet. Everyone who knows me stays clear of them.

If you ever hear that the want to use a “tilt table” REFUSE. It is extremely painful and did nothing to stretch me out. Also, keep in mind that time drags for your father. He can’t believe that he will ever be able to do anything but lay there. He really needs your support.

Please let me know if I can be of any help.