Guillain-Barre Syndrome

[gbsVanuatu]

I had GBS in 72 as a 8 yr. old. I believe, I contracted the illness after a flu shot. I was living at the time on Espiritu Santo, Vanuatu. Long story short, I am 44 now and am still without complete control of my feet. Doctors call it drop foot. I can make small movements but very little strength in the move. Question is this, anyone know if I can correct any of this thru therapy? I am considering this if it has a chance of some improvement in my feets function.

[seaangel2364]

Yes you can. I too had drop foot severly and although it took awhile I can walk. It's hard mind you and it's like walking on bone and nerve, but therapy did help along with braces to lift the feet as your learning to walk again. I wish you all the best, and if I can help in any way please let me know. Take care, Shawn

[ElizabethKhoong]

My name is Elizabeth Khoong. I was diagonsed withGBS last year July at the age of 33. I was living in Shanghai when I first fell sick. Doctors here could not figure out what happened to me despite various tests and drips given at the hospital for 4 days consecutively.

By the 5th day, I could not move my upper and lower limbs, totally dependent on my husband. My left foot dropped downwards (foot drop) by the 2nd day when I was sick. I lost control of movements, couldn't walk or move, obviously. I then flew to Singapore for diagnosis and treatment. I was given IVIG for 5 days and had then shown improvement since.

12 months had passed by, I learnt to use and increase my muscles strength on different parts of the body. My upper limb seems ok now (except for right hand grip and pinch which are still about few per.cent from normal), however, I still have foot drop on my left foot. I wear AFO (ankle foot orthotics) when I am walking and sleeping. It seems that it takes a long time (well, I did not expect that) to increase the ankle muscles. But I don't know how long it takes. If anyone has recovered from GBS and foot drop, perhaps could advise on this.

Try tapping your foot (and/or feet) against the floor. Or put an ankle weight on your foot on a sitting position and move the ankle towards the side (just like a wiper).

Hope that helps.

[shorty2552]

I had the drop foot also and with physical therapy, I was able to regain all control! I'm sure therapist could help you to regain some of the lost motion in your feet! It is at least worth a shot!

[ElizabethKhoong]

Hi shorty2552

How long did you took to regain control over your foot drop since you had it?

My foot drop is slightly over a year now. Foreign hospitals therapists are extremely expensive in Shanghai and local hospitals do not know how to deal with it. Would you be able to describe the exercises/therapy you did for your foot drop?

If writing is difficult, I could call you if that's easier to explain.

Desparate Malaysian GBS patient in Shanghai, Elizabeth

[shorty2552]

I think because they noticed the drop foot within a week of diagnosed, that i was able to regain control back as they taught me to walk again. They started by making me wear these boots to sleep in. The purpose of the boots was to keep my feet at a 90degree angle with my legs. Maybe you could use a boot that comes up higher then the ankle to copy this idea. Then the therapist would do strengthening exercises to help me build up that muscles again. If you have a person you can recruit to help you, these exercises may be easier on you! I will do my best to describe them but if you get confused, let me know.....
1. I called this exercise the "gas pedal" exercise! Have the person sit at your feet. Have your feet in a 90 degree angle. Have the person place their hands on the bottom of your feet for resistance. Try to press on their hands like a gas pedal. As you strengthen these muscles, the person should be applying more pressure to make it harder for you.
2. This is just the reverse of the gas pedal exercise! Point your toes and have the helper put their hands on top of your foot. Try to pull your foot up into a 90 degree angle. The person helping should be applying pressure to help you strengthen the muscles.

At first the helper person may feel like they are only applying a finger's worth of pressure but something is better then nothing. Try to do each one like ten times each and then progress from there. Hope this helps! I am also still in contact with my therapist and will see what i can do about about getting suggestions from her!
Shorty2552

[ElizabethKhoong]

Hi Shorty2552

I do put on the boots known as Ankle Foot Orthosis. Two types: (i) soft plastic meant for slipping into shoes. So I use this outdoor (ii) padded ones to put on while sleeping. Both are the 90degree angle type. I wear these for a year now since I had GBS.

I will try on the methods you suggested. If you have any new ideas or your therapist have any idea, please do not hesitate to let me know.

I am anxious to get fully well and fully independent.

Malaysian living in Shanghai, Elizabeth Khoong

[mollytykate]

I to am suffering from possible foot drop. I was diagnosed May 3rd of this year, in the ICU for a month and hadn't realized that efforts to prevent foot drop weren't taken until I went to the rehab unit, were they tried correcting it with these uncomfortable boots. I've been out of the hospital since July 27th and my outpatient physical therapy still isn't cutting it. I see my rehab doc. next monday, hopefully she'll have some answers.

[seaangel2364]

All of you, Elizabeth, Shorty just hang in there the best you can. I was in a coma for a month and completely paralyzed, but for my eyes. This was five years ago, but seems like yesterday. I now will at random still loose the feeling in my hands, legs, and feet. Everyday is a surprise!

Anyway's like I said hang in there. When I had it nobody knew what GBS was. I was in complete renal failure, and had strep pnemonia in my blood. They told my husband i wouldn't make it through the night, and he was 5 hours away working. God can't imagine that drive for him. He told them, " you don't know my wife!" A year after I relasped with it again. Like once wasn't enough!

I am not the person I was, and am finally realizing this. No more surfing, walks, gymnastics,anything!!
Every step I take is like walking on bone and nerve. No more going barefoot either. You guys sound like your overcoming well. Keep on and you all are in my thoughts. Take care, Shawn

[ElizabethKhoong]

Hi Shawn

I am so so sorry to hear about your condition. Immediate diagnosis is impt as it affects e immediate treatment for GBS. As I mentioned earlier, I was in Shanghai and for 5 days, the doctors here couldnt diagnose me. I had then flew back to Singapore and diagnosed and treated immediately.

Recovering from GBS is a long recovery process. I wake up every morning now and thank God that I do not have a relapse. I still hang on to full recovery. I continue to strengthen and exercise every day, focusing on my left leg.

Sometimes I felt frustrated and felt like giving up. I told myself over and over again - "Giving up is not an option!". People around me, my husband, my parents, my siblings, my church friends, my friends cared so much and loved about me. I want to recover fully - for myself and for them.

You are right, hang on there.... Simple message but it meant a lot!

Shawn, where are you right now? How is condition now?

Elizabeth