First time in, HELP

Hi Peggy,

Bill is still in the beginning of this illness and he needs time to recover.

The motto here is [B]GBS—-Get Better Slowly.[/B]

Recovery rate is so different for everyone. Many, Many people still have no feelings in their feet and hands because of the nerve damage. It can come back at anytime or never come back. It can takes years to recover from GBS and some never recover, all depends on the amount of nerve damage. This is not like the common cold where it goes away after a certain amount of time.

Did he have any treatments to halt the GBS(Not a Cure as there aren’t any cures)) and is he going to physical therapy? Does he have any pain, because with GBS there can be extreme pain, mild pain, or some have no pain?

Is he walking or is he in a wheelchair or using a walker or a cane?

You will get more answers from other members soon.

Wishing your brother well.

Hello Peggy,

As Brandy said, He is still very much “in the beginning”, which I know is very hard to hear. There is absolutely no reason to be concerned as this is quite normal. You ask how long it will take, and its possible that you wont like the answer. It can take from months to years, and unfortunately there is no sugar coating it. It is important however to remain positive and to keep working on improving through PT, but remember not to overdo things. Its important to look back after a few months and see what improvements have happened over one or two months eg. He may not been able to wiggle or feel his big toe, possibly a month or two down the line he is able to do that. Maybe you should start a diary of your own and write down all the little things you see happen every day or week, and after a few months, give him the diary to read to show him that there are improvements. This often lifts the spirit.

Hi Peggy – Bill’s sister,

I’m glad you found us as you and Bill will probably be hearing much advice from us that this is all so slow on recovery. It seems like GBS can come on so fast and do so much damage, but that is the way it is. We will be looking forward to seeing Bill’s own post some day soon! In the meantime, he will be sleeping a whole lot – he needs it.

I’m always the curious one here… tell us more about where you all live, what work does Bill do, etc. You are part of a world-wide family now 🙂

It took nate 8 mos before he got any feeling at all in his feet. He is 29 yrs old. He was hospitalized 9 1/2 mos. He got out Sept 30, 06.
He is 14 mos out from diagnosis, and still has partial paralysis and numbness in both his lower legs and feet as well as arms and hands.
The damage starts in the legs and feet and moves up from there.
The place that it started is always the last place to recover with the most damage occuring there.
The covering on the nerves and the nerves are damaged and either will repair themselves or grow new roots to replace the damaged ones.
Unfortunately, it takes a long time to do that. Nerves are the slowest part of the body to heal.
Try not to be too anxious about time frames though. Everyone is different and everyone heals at a different rate.
The best thing is to keep reminding him and yourself of the small changes and little bits of progress he has made. Remember, he came very close to going over the edge. Just coming back from there is a great feat.
Take pics of him if he will let you for your diary. One day you will look at them and remember how bad it was and how good it is now.
Try to keep upbeat even on the darkest days.
It will help all of you.
Trudy, natesmom

Peggy, I was DX 1/8/07 so I know what he is going through. Very important to allow himself to skip PT if hurting/tired. This I have learned is not something you can push harder to get better. The nerves have to repair. Rest is best -I found out the hard way. I did extra exercises on my non PT days and actually set myself back and couldn’t even go to PT last week. I had to crawl up the basement stairs after my work out. I’m 38 y/o mother of 2 family doctor and previously very physically active. I used to jog, show horses(barrel racing), water ski, karate and now I am excited to go to Wal Mart and make it without the scooter. It helps to talk to others and as soon as he can get on the computer – I would be glad to talk with him. This forum has really helped me. Dr. Shawn

Hi Peggy and Bill,

I think you will find the forum to be such a huge help, not only for asking questions, but just venting your frustrations. Our forum family is very compassionate and supportive. This sounds awful in a way, but it was so good to find people who were going through, or had been through what I had, just speaking to others who are in the same boat seems to lift a certain weight off ones shoulders … 🙂 realizing you actually arent going crazy 😉 .

Have you contacted or been on the gbs-cidp.org website (the Foundation) and requested their patient and caregivers packs? If not, it is well worth it to do that, and you will get a newsletter about 4 times a year that has very good articles in it for you to read.

I am going to send you a private message (PM), you will be able to see if you have one, once you are signed onto the forum, if you look on the right hands side towards the top of the page, Just click on ‘private messages’.

Hi Peggy, This forum has become my best friend. I am 4 months out of dignosis for a very severe, very fast acting GBS. I am 62 and I have just gotten the feeling back in my legs, feet and hands in the past week. It comes so slowly you almost don’t realize it happened. Ali’s idea of a diary is a wonderful way to keep track of any improvement. The last two weeks have been horrible for me. It’s the “oh, woo is me syndrom” Plus alot of pain that wasn’t there before. My calves, lower back, and neck hurt. And my whole body feels like it is vibrating on the inside. And tomorrow, everything may change. Everyone on this forum is wonderful. I find reading all the info on this virus helps. Lots of love, laughter(which is very hard somedays) and prayer to you and your brother and all the rest of you with GBS. This too shall pass. And a small glass of wine in the evening helps.
Diane

[B]Peggy>[/B] Welcome you have been adopted by the GBS/CIDP family. Nice group and full of ideas and reminders and suggestions and stories. The information you obtain here will be different for each case but you will quickly pick up on the similarities.

[B]Diane>[/B] I am in my 15 month since my onset and basically have found what you have found to be what I am experiencing. Some things change within a week and then I notice they are gone when I read about them on the forums. So I agree with the Journal or Diary. I find the vibrating on the inside is very distracting and I can feel it just draining my energy level. My hands and feet burn some days. They are both numb but for the most part the needles and pins have been gone. If I hold my hand infront of me and watch my fingers they twitch! I am not taking any medications and do have a daily exercise plan that I keep a close eye on. When in PT or OT I will notice they are starting to pile on the extra weight or reps and I do what I can and make sure I never over do it! From the begining when the feeling started to come back I noticed that where I had pain was actually weak muscles. Abs are in terrible condition and that lets the support my back needs to cause those weaker muscles in my back ache. Same in the arms and neck. Now I make sure each and every tiny muscle gets moving and getting some strenght. If It does not it might cause cramps in the hands. Also the tendons have to stretch and so do the ligaments. I have found that a well planned or balanced exercise routine has really helped me. I also agree with you that from day to day things can change. I take all those changes as good signs of getting better slowly! If they persist I mention them to the OT or PT group….they have been wonderful with working on the tiniest muscle to the largest ones. Do you have problems with swelling in your hands and feet?

Good morning Peggy.
I am going on 3 months with GBS. I was blessed as only my feet were damaged. I had IVIG and now am walking without my cane or walker a little more each day.
My feet still feel numb but when touching them find they are also very sentive. I go to therpy 3 times a week and only do as my therpist tells me. The hard thing I had to accept was patience. patience. I turned myself over to God and let it go. each morning I look for improvement and find it. The more you fight GBS the slower your recovery accept you have it and you will find the days and weeks go easier. look at others that are worse than you and be thankful you are where you are. this can be cured and will be but patience is the secret and doing more doesnt make it heal faster. May Gods blessings be with you and let his healing powers be done

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

Peggy,

Give him lots of hugs and love, keep him warm and let him know you care much, feel for him as you obviously do. No magic tricks here, it is a drawn out recovery for most, but look at the alternatives! Strange as it may sound, GBS is a much nicer disease to get than some of the other neurological disorders we know even less about. Odds will have it he will be tap dancing in no time, but if he has ongoing issues he is fortunate to have a Sister who cares enough to learn about his condition!

My experience has been that family members are supportive during initial treatment, then think all is well once the person is out of critical care. I feel frustrated with my family at times because they cannot relate to residuals, which is a whole different story. Anyway, what a wonderful person you are to come and visit here to understand his plight.

Hi Peggy,

We are neighbors!!! I am so excited. I haven’t ever met anyone locally. I live in NW OKC. I would love some day to meet you and your brother 🙂

You are such a sweet sister taking care of him and all. And you are so sweet to take the time to respond to all of our comments.

Let me know if you would like to meet for coffee or lunch some day!

Peggy, Found your reply. Thanks also! Shawn