GBS: How do adult patients feel during recovery?

    • Anonymous
      June 8, 2011 at 9:45 am

      Hello,

      My DH was dx’d with the GBS almost 2 months ago. Docs said his case was mild because he didn’t need a ventilator. He spent 1 week in a hospital where he had 5 IVG’s for 5 nights. Then he was discharged and directly transported to a rehab hospital for an intensive PT and OT where he stayed another 3 weeks.
      He has come a LONG way since the evening I took him to the ER or even the 1st week at the hospital. He HARDLY made a few steps or could use his fingers then. Two days ago he started using a cane. He’s still numb from elbows down and from knees down. I’ve been driving him to the outpatient PT and OT twice a week for the last 4 weeks…. I’ve got a bunch of questions because it’s scary to watch my DH who was very healthy before the GBS and now fighting this disease that doesn’t have a clear blue print from what I’ve read :-(….

      DH had an EMG done 4 weeks ago, but I was kind of dumbfounded when at the end of it, the neurologist said “OK, I’ll see you in 4 weeks”. Then I jumped in to ask what’s the prognosis and timeline? His answer: “Prognosis is excellent, no timeline”. Is this all you get from the neurologist?
      What questions could we ask him to learn more because tomorrow DH’s going to see hime again? How accurate in the EMG test? What does it tell exactly?

      How do adult GBS patients feel during their recovery? I wonder whether my DH feels sooooooo tired because of GBS alone or due to the medications for his high BP which started after his IVG.

      When might the senses start to re-appear? When in the hospital DH didn’t feel itchy spots on his numb areas, but now he does sometimes. Is this an improvement or just luck?

      How do the GBS patients compensate for the numb fingers? My DH’s body coordination & balance is improving slowly as he learns to feel his muscles (legs are still numb), but his fingers are much harder to control. He works on the computer mostly at his work, so I wonder how he could improve it when he needs to go back to work.

      How do the neurologists decide when their patients are OK to return to work? Ours said he’s flexible…so it scares me. DH wants to return to work, but IMO, he’s clearly not ready. I don’t think he’s safe to drive his stick-shift car. He gets very tired after his daily body/leg and hand/finger exercises and takes long naps or lies around. What employer wants their employees to sleep on the job?

      I’m concerned and probably have too high expectations :rolleyes:

      Thanks for reading.

    • northernguitarguy
      June 8, 2011 at 10:14 am

      hey scaredwife

      nice of you to be the one finding answers here, your DH is fortunate to have you there.

      I clung to and put a lot of expectations around timelines, it became frustrating.

      There is a decent book to read on it you can get from amazon, I think there is only one book on it.

      I think the majority here have become frustrated by neuros because they all give the same answer-good prognosis, no timeline. In fairness to them, they are giving the answers that the foremost medical experts on gbs give.

      what helped me?
      -staying as positive as possible, even if it seemed like denial
      -stretching is number one
      -exercise in any comfortable manner, I found swimming to be very much to my liking
      -massage as hard and deep as he can take it, he’ll know what needs it, I recommend finding a good massage therapist
      -for my mental well-being, meeting positive people who recovered or were moving on in life positively helped immensely. Get in contact with someone to talk to, feel free to contact me.
      -I agree that he should keep an eye on returning to work even if it takes time to recover. Goals helped me.
      -Do something that he always wanted to do with some time off. For example, I have long wanted to rebuild a beat-up guitar. I finally got to do that over last winter. I now have a fabulous guitar I am very fond of.
      -concerts, sporting events, vacations, sex, whatever the body can handle

      Best to you, be patient-you have no other choice.:)

    • Anonymous
      June 8, 2011 at 10:43 am

      We are all different. your husbands case sound very close to mine. I was just in the hospital for 5 days and left for home just after IVIG with a walker and did out patient rehab. I am now post 18 months. I started with a cane after 2 months, gave up the cane in 7 months, and tried working full time in 9 months. I could not keep up the pace at work. 10 to 12 hour days were required and 6 to 7 days per week. I am 61, and currently not working outside the home. I do all home chores; cooking cleaning, laundry, cut the grass, maintain gardens but work at a slower pace and rest when tired. Most people see positive improvement quickly, and numbness and weakness continue longer but should gradually return. My new normal is at about 80% of my old normal. Remember we are all different. Healing comes slow and rest is important. Your husband should do all that he can do but realize his limitations. Try different things to improve strength. Stay positive and enjoy what he can do. also, remember that mental attitude is important. We all usually look healthy and friends and co-workers usually do not understand what is happening. Your support and the support of his friends and family is important. For you, relax, odds are he will get better, but it will take time. My doctor (who really know nothing about GBS) said I would be better in 3 weeks after IVIG. Then said that 1 to 2 years is normal.

    • Anonymous
      June 8, 2011 at 11:35 am

      Thank you for the quick responses.

      I forgot to ask in my first posting. How would you describe your numbness? E.g. my DH walks with a cane, but his other arm looks like he carries it (it doesn’t hang loosely at his side). Honestly, when he just stands still he looks like a sitting rabbit :D. When I ask him why he says that his hands are VERY heavy as if filled with lead.

      Did you all learn to drive your cars while being numb in hands and legs? I wonder if it’s at all possible and if it’s safe.

      HarryB: Does the 80% of old you mean that you still feel numb a little bit or is it a new overall feeling for you because you compare yourself to the good old days? If your work wasn’t as HARD (I don’t think I could do 10-12 hours a day for 6-7 days a week), would you be able to do it now?

      Yes, I try to stay positive, but I surely wish for my old hubby back especially since I need help raising our toddlers. I’ve read a little on these forums, but I enjoyed success stories the most:) … other posts made me sad and depressed…..I wish you all the best dealing with such a nasty disease.

      Thanks again.

    • northernguitarguy
      June 8, 2011 at 4:49 pm

      as I do at times I neglected to also say how important my family and good friends have been. Take full advantage of them:) We were lucky to have people drop off dinners, take the kids for a night, etc. Take whatever they’re giving.

      I’d be out on the streets were it not for my wife Lisa and sons Jerry and Louis

    • Anonymous
      June 8, 2011 at 8:19 pm

      Yes, I drove to the PT appointments while I still had a walker. Once I felt comfortable with my hands and feet I started driving. I live in a small town and you can get from one end to the other in 15 minutes. My promice I made to my wife was that if I felt at all bad I would stop and call. I set you a private message with my phone number so call if you would like to talk
      I live in Central time (wisconsin) and go to ber about 9:30.

    • Anonymous
      June 9, 2011 at 1:04 pm

      My short answer – scared and exhausted. The need to sleep is driven by the body’s need for recovery time. If you are awake there is a conscious drive “to be on”. If one is healthy, you don’t recognize the drive. When DH gets the overwhelming “all done in” symptoms – it is REAL and he can’t over ride it. Pushing on thru may do more damage to recovery, in the long term. This is not well understood in the PT field yet. Nerves take a very long time to heal – the longer in length of the nerve, the longer the healing time. After 17 years I still have nerves trying to heal. GBS is a really wierd world 😮 There are many similarities between patients BUT we have our own unique way of presenting this disease process. Listen to and observe your hubby and never stop telling him that you love him – you are now living the vow of “in sickness and in health”. You both need all of the support you can get. Readily accept any offers of assistance. This is an intense journey for you, too! (nothing “feels” mild when you are the paralyzed one:eek: )

    • northernguitarguy
      June 9, 2011 at 3:16 pm

      [QUOTE=Judi Z]My short answer – scared and exhausted. The need to sleep is driven by the body’s need for recovery time. If you are awake there is a conscious drive “to be on”. If one is healthy, you don’t recognize the drive. When DH gets the overwhelming “all done in” symptoms – it is REAL and he can’t over ride it. Pushing on thru may do more damage to recovery, in the long term. This is not well understood in the PT field yet. Nerves take a very long time to heal – the longer in length of the nerve, the longer the healing time. After 17 years I still have nerves trying to heal. GBS is a really wierd world 😮 There are many similarities between patients BUT we have our own unique way of presenting this disease process. Listen to and observe your hubby and never stop telling him that you love him – you are now living the vow of “in sickness and in health”. You both need all of the support you can get. Readily accept any offers of assistance. This is an intense journey for you, too! (nothing “feels” mild when you are the paralyzed one:eek: )[/QUOTE]
      +1 on getting all the rest he can and when he needs it.

    • Anonymous
      June 13, 2011 at 9:46 am

      Hello again,

      Thank you very much for your posts.

      I am wondering what kind of precautions you take since you’ve been dx’d with the GBS. What medications besides refusing flu vaccinations should people with the GBS avoid? One thread mentioned “anesthetics without epinephrine” at the dentist’s office. Should I/DH start reasearching and write each and every drug he should refuse in order to prevent a relapst?

      Also, my DH doesn’t drink or smoke, but he would like to have a bottle of beer once a week at least (he’s German after all:p ). Is it dangerous? Clearly, I think I’ll become a mental case because now I’m worried of a relapse or something.

      By the way, how can PT/OT harm more than help a person with the GBS as Judi stated in her posting? What I’ve observed so far is that the therapists watch how my DH performs and they also ask ‘is it too hard? Do you feel fatigue?” If an answer is Yes, they don’t push him, but if it’s a “No”, then ask him if he’d like e.g. a heavier weight on his ankle or on a machine and proceed from there. I thought it’s appropriate, but based on Judi, it seems as if you have to go light on everything….:confused:

      PS. I’ll have to find that book on GBS on Amazon.

    • Anonymous
      June 13, 2011 at 2:06 pm

      Everyone of your questions are questions that I have asked. PT/OT sound like your therapist know about GBS and fatigue. I asked my doctor if too much work would hurt recovery and he stated no, it may give you a bad day or two or three but will not cause future damage and I have found this to be the case. Your husband will need to listen to his body and when tired rest. Even skip a session if he is tired. When I went to the dentist, I told him I had GBS and he knew what to do. He block the nerve of just the tooth. I make wine and I do and have had a glass of wine or two ever since I have been home. I take no medication, the body does heal itself in the majority of cases. We are each different but simular. Good luck

    • Anonymous
      June 14, 2011 at 9:13 am

      [SIZE=”2″]Hello SW,
      I got my GBS from a flu shot and didnt see a doctor till Jan. I was blessed as my doctor is one of the best on GBS, The 1st visit I was useing a walker and wheel chair and she did the nerve testing on me.She said 3 hours later you will go direct to the hospital from here. My feet were numb and my ankles and it had started a slow walk up my legs. The 1st night in the hospital I started IVIG and for the 1st time in weeks my feet started to get warm,
      I had 5 IVIGS and then went home in a wheel chair. Monday I started therpy 3 times a week for 3 months and went from a chair to a walker to a cane and walked out on my last day on my own.
      My wife went on line and found everytyhing you want to know about GBS. It mimics (POLO). You will recover from this but not tomorrow. It is slow and rest is a BIG help. YOUR best advice are the people here. Many many doctors do not know what GBS is. If you live close to a university hospital use it.
      I was constanley pushing myself to improve. Here 3 yrs later I am normal but still feel signs of numbness in my feet. they will be the last to heal. PLEASE PLEASE stay away from any FLU–NEUMONIA SHOTS. TELL YOUR FRIENDS TO STAY AWAY.Be postive and be thankful yours didn’t go from your feet to your head in 24 hours. We know more than 90% of the doctors. You are coming back and blessed and a loveing wife and friends. I have you in my prayers Your friend Lakoda [COLOR=”RoyalBlue”][/COLOR][/SIZE]

    • Anonymous
      June 14, 2011 at 9:26 pm

      I was diagnosed with GBS on 12/28/10. Two months after my diagnosis I was only able to walk with a walker. My worst symtoms were my hands and my ankles. I progessed faily quickly and went back to work on 3/14. I was wearing AFOs for ankle weakness but was walking without a cane. As of today I still have some weakness in my hands and ankles and pain and tingling in the bottom of my feet. I am able to handle my work schedule without any problems. There are still days when I get tired. I go to the gym 2 to 3 times per week and I ride my bicycle and go kayaking. I am still not able to surf which was my most enjoyable hobbie. When I look back at where I was, not able to hold a paper cup, not able to lift my legs from the bed, not able to turn over in the bed and not able to walk I realize that I have come a long way. I am not 100% but I can live with my current condition. I think that the only real advice that anyone can get is that your husband will get better but it will take time.

    • Anonymous
      June 15, 2011 at 9:15 am

      I greatly APPRECIATE your responses 😉 . They provide me some insight as what my DH is going through now. He’s a super quiet person in general, so now it helps me a lot to hear people here what they feel when you were sick and how they progressed to their health. The best part is that even though my DH is quiet and doesn’t talk that much about his current condition, he is VERY optimistic that he will get better which gives me mental comfort to carry more than a full load these days.

      I’m wondering now whether age plays into the healing process. If you’re very young, you heal fast and if older the process is slower. Though I do realize that plenty of factors affect healing.

      Have any of you experienced problems with your vision due to the GBS?
      Our neurologist whom we saw last week referred my DH to a neuro-ophthalmologist.
      When my DH started to experience the first signs of the GBS (this is based on hindsight), one day he felt that his vision deteriorated (besides feeling tired and muscle fatigue), but did not get worse and neither did get better as days went by. He’s always worn glasses to see far away like driving, but never took them off to read a magazine either. So, at this point he still could see far, but not up close except large letters. Then his eyes got very sensitive to the light outside. A week later he was dx’d with the GBS. Then 3 weeks later he felt his eyes got a tiny bit better, but still not good enough for reading, and then 1 more week later his sensitivity to the outside light was gone. Then my DH made a discovery so to speak:D . After discharge from the rehab hospital (4 weeks after GBS diagnosis) he came to the kitchen table w/out his glasses. While waiting for me to prepare his cereal, he glanced at the newspaper laying on the table and told me in a confused voice “Huh…I can see letters”. Then grabbed the newspaper and said “Wow, I can read w/out glasses. Now I’ll be able to read at least”. So, go figure. I wonder whether it was like this all along….in order to read he just needed to remove his glasses. I mean he still feels that his eyes are weaker and doesn’t see sharp up close or afar, hence the referral to the specialist.

    • Anonymous
      June 15, 2011 at 9:18 am

      [QUOTE=northernguitarguy]There is a decent book to read on it you can get from amazon, I think there is only one book on it. [/QUOTE]

      Thanks for telling me about the book. There’re a few books, but your mentioned book is the most recent, published in 2007. I’ve requested an inter-library loan for it and looking forward to read it.

    • northernguitarguy
      June 15, 2011 at 3:58 pm

      [QUOTE=ScaredWife]
      Also, my DH doesn’t drink or smoke, but he would like to have a bottle of beer once a week at least (he’s German after all:p ). Is it dangerous? Clearly, I think I’ll become a mental case because now I’m worried of a relapse or something.

      By the way, how can PT/OT harm more than help a person with the GBS as Judi stated in her posting? What I’ve observed so far is that the therapists watch how my DH performs and they also ask ‘is it too hard? Do you feel fatigue?” If an answer is Yes, they don’t push him, but if it’s a “No”, then ask him if he’d like e.g. a heavier weight on his ankle or on a machine and proceed from there. I thought it’s appropriate, but based on Judi, it seems as if you have to go light on everything….:confused:

      PS. I’ll have to find that book on GBS on Amazon.[/QUOTE]
      I’d be a mental case if I didn’t have a few brewskies now and then, ditto for red wine.
      I don’t have hard facts about work during recovery. At a recent conference on GBS the leading doctor at a forum said that the only way to battle fatigue is through vigorous exercise. Take what you will from that.

      However, I firmly believe that returning to doing routine things ASAP is a must. Doing things around the house will count as work and even simple tasks can be draining. I regained strength fast through weightlifting, as much as I could.

      And for the head there is nothing like conquering obstacles, no matter how small or large. Redefine. Push. Rest when needed. Enjoy the hell out of what ever you get back.

    • kevin2010
      June 17, 2011 at 9:50 pm

      PT/OT sound like they are pretty good. Exercise is important to build stength but not to the point exhaustion. At the same time being in active can be a problem so there is a real balance here that needs to be achieved. My advice try to get back to things that are normal for your family in short increments.

      As for the beer go ahead in moderation all is good.:)