All about Guillain-Barré Syndrome - Kenny has difficulty recovering from GBS. Can you help?

Kenny began getting sick in Oct. 2000.
It started by his feet getting numb, and as time went on more things began to get numb. He spent several nights pacing the floor because he was having a lot of pain in his legs and hips. This all started on a Fri. evening, and by Sunday he felt so weak he couldn't do anything.

Monday morning I took him to the doctor. Our family doctor thought he had the flu and gave him some pain medicine and sent him home. He wanted him to go the next day for blood test.
The next day I took him for the test, and he could hardly walk and was still hurting. I call the doctor back, and he prescribed some different medicine.

Wed. morning my husband got up crying and was numb all over. He could hardly walk, talk, blink his eyes, or swallow. I called the doctor, and we went right into the office. When our family doctor saw Kenny, he put him in the hospital. Our family doctor doesn't go to the hospital, so another doctor took over.
After studying Kenny's records, and symptoms he knew right away what he had. Of course only a spinal tap would tell for sure, and that is what he did. At that time the doctor told us he didn't know just how far the illness would progress, or how far he would come back. Of course Kenny thought he was dieing.

We were very fortunate as he never became completely paralyzed. He went in the hospital on Oct. 18th, and was discharged on Oct. 29th. Compared to many people on this we were very Blessed. But being self employed, we couldn't afford therapy at the hospital so we told them to tell us what to do, and we would do it.
Kenny had to learn to walk again as his balance was very bad. He worked very hard at trying to get it back.

Since therapy is very expensive, Kenny has really tried hard to do things on his own. The spring after his illness in Oct. 2000 he tried riding a bike for about three months each day for about 45 minutes. He said it didn't seem to help, and by the time he was done he could hardly get to the house when he got home.

Not knowing much about this illness, Kenny thought if he worked hard, he would get back to normal. We owned a small town barber shop, and both worked there. I went back to work in three weeks , after I knew it was o.k. to leave him alone. After eight weeks, he tried to go back to work part time, but that was hard, because so many people wanted an apt., and it's hard to say no. It wasn't long till he was back full time. I didn't realize how hard it was on him at first, but he was just exhausted all the time. He would go to work, come home, eat supper and go to bed. Day after day this is the way it was for one and a half years. He finally decided he couldn't take it any more, and we retired.

Kenny was 56 yrs.old at the time of his illness. It has been over three years now, and he still has numbness in his face, back and feet. His feet sometimes feel like they are freezing, but are warm to the touch. The calves of his legs are still tender, and legs are weak. His biggest problem is fatigue. He just can't do much of anything for longer that an hour or two without becoming very exhausted. He can do about anything, but only for short periods of time.

To add to his problem, he was trying to help do a good deed for his church by cleaning out an old cemetery, and ended up having a tree fall on him. It broke his back, a burst fracture of the second lower lumbar vertebra. After almost four months he is still trying to get better from that. This has seemed to make his fatigue problem worse.

We are both living each day, and feel blessed that all is as good as it is. I could have lost him with either problem he has had. From reading things on the computer, it sounds like about 30% still have problems after GBS, and more so the older you are.
Kenny really didn't want to do it, but after he broke his back, we decided to try for Social Security. The thing we have run into with this, is I don't think people really believe he really has a problem because he looks pretty good and as I've read in the information I got from the GBS Foundation, his problem usually can't be detected in a regular office visit. I just wish these people could come and live with us a few day and see just how hard it is for him. They turned us down for SS and we have appealed, but don't know still if they understand. It is very frustrating.

How did we make it thru GBS? I guess because we love each other very much, and have a lot of faith in God, and prayer. We both feel GRATEFUL for what we have, and that is one another. Thru all this, I could have very easily ended up alone. Kenny doesn't complain much, but the other day he did say, "I sure do get tired of feeling this way."

We still do things. We joined a Senior Center, and try to do things there. Kenny has to pace himself though. We try to walk about two miles each day (which we still do weather permitting), just to keep the legs going. He says by the time we get home he feels like he is carrying someone on his back.
We also belong to a Senior Center and have started do water exercises two to three times a week. It is a one-hour session, but Kenny isn't able to do all the exercises. He must pace himself or he is so fatigued he can hardly get out of the pool. At that point we go straight home and he is on the couch about the rest of the day.

If we have plans to do something like go out with friends or just to do any activity other than stay home, he must rest most of the day before we do that or he can hardly keep going. Some times when he gets fatigued, he feels bad a couple of days.

He tries real hard not let this keep him down but I know it is very hard for him not to give up. That we won't do!!!!! At this point, there is no way he can work, and this problem with Social Security has been very stressful too. I look for us to have to get a lawyer if we want to continue this. The thing is, he tried so hard not to go this route. He has always been a very hard worker his entire life and if it weren't for GBS he would never have even given this a thought. To look at him, most of the time, you wouldn't know there is anything wrong with him.

I don't wish this on anyone, but sure is nice to know we aren't alone in this. I guess what I would like to know, and maybe compare with others is after three years, is there any chance he will get any better, or as he ages will things maybe get worse. We would like to prepare ourselves for what ever we may have to face in the future, just want to know what we might expect.

We would love to hear from others!

Very Sincerely,
Kenny & Bonnie Kistler
11.2003

January 2004: Since october we have been turned down for the second time for Social Security. We are appealing again with the help of a lawyer. Finally got a doctor to do a nerve conduction & electromylogram study on him. That will be Jan. 15th. He has also had to go to Bureau of Vocational Rehab. He did that just today.

There is just no way Kenny could work a full time job, but I guess that is part of the game. He still has problems with a lot of fatigue, weakness in legs and numbness in toes, face and back. Things really haven't gotten worse, but no better either. The Neurological doctor he went to last week did give him some medicine that is suppose to help him with the fatigue, we will see. That is the first time any doctor has offered that. We are still doing the warm water exercises two or three times a week. And we try to walk too, weather permitting. Kenny has to pace himself. He does over do some times, and spends a lot of time on the couch.

This Social Security things is rather hard on him. We will both be very surprised if he gets it. We will get along o.k. if he doesn't , but it sure would help. Our health ins. is over $600. a month now and goes up a couple times a year. And that's not for very good ins. I really can't complain too bad. They paid pretty well when Kenny broke him back.

We did bring in the New Year going to a dinner & dance. We had a good time. Kenny laid around the whole day before we went, and a couple of days after New Years he spent on the couch. He didn't drink a drop, just danced and had a good time. He knows he will pay for it, but doesn't let it stop him from having fun. We both enjoy life and try to keep going the best we can.

Kenny & Bonnie Kistler
01.2004

March 2004: Kenny still has a big problem with fatigue, and since his broken back if he does much, his back hurts. But he continues to do things, while still pacing himself. That's a hard thing to do at times.

In regard to the Social Security, we now have a lawyer, and we went back to the original doctor that treated Kenny, ( we thought he had retired), but turned out only part time. To make a long story short, he wrote a letter recommending that Kenny get S.S. and he understood his situation completely.
The lawyer told him to go to job rehab, which he did. After several trips, and filling out many papers, the lady there said , " Have you ever thought about going on SS?" Kenny said that was why he was there because our lawyer said he had to. She also said she would recommend he get SS. Sure hope all this will do some good, but as yet we haven't heard from any one in regard to when his hearing might be or anything. So now it's just a waiting game.

I really don't know how we could have given them any more proof of his situation. We are just praying now that all this will help him toward getting it. It's now just a hurry up and wait game. I'll be sure to let you know what happens.

Sincerely, Bonnie Kistler
03.2004