My experience – 5-1/2 months in

Peggy:

I feel for your brother. I came down with GBS on Sept 9th, 2006. While I never lost all sensation (and there were times I wished I had due to pain) I was paralyzed from the waist down.

There is wide variation on how people get the disease and recover – this is how I came back to where I am now.

Sept 9th – After a week with the flu, my abdomen became numb, I went to the hospital and collapsed that evening.

Sept 12th. First day I remember since the 9th. I was totally paralyzed from my nipples down to my feet. Some feeling in legs but not much. Spent week in Intensive Care.

Sept 19th. Moved to local hospital that deals in Spinal Cord Rehab. No movement as of yet.

Sept 19th to Oct 25th. Blurry vision, hands become weak and tingly. Therapy is spent learning how to do board transfers (bed to wheelchair, wheelchair to bed). Very scary but I don’t get dropped. Also trunk excercises since I couldn’t hold myself up. Spend hours on the PT mats on my back with my legs bent trying to hold them up (and they keep falling over). Also had a lot of painful muscle spasms in my legs. Of course since this began I have hade no bowel or bladder control. Several episodes of fainting when sitting up. (This is common with spinal cord injuries apparently).

Oct 25th – Nov 18th. Transferred to nursing home (actually an old folks home that does therapy). They use electro therapy on my legs and tell me to curl my toes when the electricity is on. This is the first time I see my muscles start to move. Just the toes and ankles a bit but at least there is improvement. Still working on trunk muscles without much success. Very severe muscle spasms in legs – every 8 seconds at times.

Nov 18th. Sent home by Insurance Co. Have hospital bed at home. Can barely transfer to car from chair. Still incontinent. (this means diapers!)

Nov 18 – mid December. Seeing more movement in legs. Have home therapy 3 times/week. Can turn a set of bicycle pedals with help from the therapist. They stand me up for 2 minutes at a time – it seems forever.

Mid December to Dec 31. I can use my legs to turn over in bed. This is a BIG improvement since I would otherwise need help to turn from side to side.

January 07 – Getting more strength. I can stand up in to a walker on my own. See improvement every day. I go swimming in a local pool.
By mid month I can drive an automatic transmission car. I can transfer into bed or into car from the wheelchair without using the transfer board. Can get in to tub on my own. Also am able to sense when I need to use the toilet and get there (most of the time). I can cross my legs in the chair. This helps when putting on socks or shoes.

February 1st to 15th – In therapy they have me using the parallel bars to walk. Also using a machine where you push pedals to do steps. I can drive a standard shift car. I can stand up to pull on my pants. I can sit up in bed by using my trunk muscles. Spasms are gone except in the morning when I stretch.

Feb 15th to Feb 28th – Use the walker around the house for short distances. Can walk in to a restaurant with the walker. Working on trunk muscles in therapy.

As you can see I did not see much improvement until after about 3-1/2 months. Then things started to progress at a faster pace.

Don’t know how your brother will progress. However when I was in the hospitals and nursing home no one would give me any idea on “how things come back” even though I asked. There was no computer access either so I couldn’t look anything up.

Hope this helps

John