Hopeful, Carol

Hi Carol,
Based on what other people here have said, you can continue to get better for years and years and based on my own experience – I am able to walk again for short periods and better yet – I regained control over bladder control (never lost bowel control thank goodness!) Of course all come back under fatigue and stress but I think you should go ahead and stay hopeful that you will recover more of your functions. 🙂
Julie

Carol,
There’s so much good info here and the people are great!Think you will love the site!

hi carol & welcome,

pls tell us if you are making any improvements anywhere, the time frame, & what they are. i will give you an honest opinion & what you may be able to do to help your recovery. take care. be well.

gene gbs 8-99
in numbers there is strength

carol,

first, you do not sound like a pathetic complainer? in fact the opposite. sounds like you have & are doing everything you can think of to improve. your positive attitude is your best ally. even though it is true what your neuro says, abt keep trying & don’t give up, i know you are looking for a more concrete response. here goes; since you are slowly making improvements, you can COUNT ON more. gbs stands for Get Better Slowly. it will not happen fast so pls don’t expect that. i am 8 years post gbs this month & still recover. as time goes on, the improvement does get slower, but it is still there. i think that is a million times better than no more recovery, don’t you think so too? yes, there will come a time where the recovery is so slo that you can’t find it, but you far from there. what i suggest requires no one but yourself, so forget insurance etc. first, continue all you do. it sounds right. now abt the lower half of your body – start w small things you want it to do. i don’t know your exact capabilities so 2 examples might be; 1] work on that toe that now slightly moves. make it move more, 2] from a sitting position pick each foot up one at a time as far as you can. even if nothing happens, do your best in your mind, but pick simple tasks. picking your feet up is a basic necessary step [pun not intended] in walking. get the idea? work on as many little things as you want. if you start to feel tired you must recover from them in 12 to 18 hours or it is too much. w time you will see improvement, just do not expect miracles. this stuff takes time. this is what i did & it worked for me & i hope it works for you. be an active member of this board. it’s good & it’s good for all of us. you’re doing great. never give up. never give in. take care. be well.

gene gbs 8-99
in numbers there is strength

[QUOTE=Carol J]Oh Julie, it was so nice of you to reply. Tell me about yourself. When did you get GB and how bad was it? Did it last a long time or did you recover in a fairly short time. [/QUOTE]

Hi Carol,
Actually at this point we aren’t completely sure whether it was GBS or is CIDP. The timeline is more like CIDP but other things make my neuro think GBS. I would say I’m not typical but I don’t think there is such a thing with this family of diseases. :p

Otherwise, I started getting numbness in July 2005 but it progressed very slowly until last summer when I was nearly completely paralyzed (all but my leg leg) within a few days and ended up in ICU etc etc etc. I have gotten much better and reading other people’s testimonies I will say that it was pretty quick. I got out of the hospital mid-August and was about at the level I’m at now by January. Things have been more or less the same since then with monthly ups and downs.

Like Gene, I came up with my own routines for getting better – there were certain things I wanted to work on like my vision, my ability to swallow and my ability to hold my bladder that didn’t require PT so I did them on my own. I did do some PT in a controlled environment, enough to know how to do my exercizes properly and then I just worked, worked, worked. While sitting at my desk re-training my eyes I’m also wiggling my toes, jiggling my foot or stretching something or another. Honestly some of that is just the sheer joy of being able to do that again! The improvements may be hard to see unless you keep some kind of journal, or your husband has your past paralyzed state firmly imprinted on his mind and reminds you frequently how much better you are. 😉

Keep at it and keep us posted on your progress – everyone victory is a shared event on here!

P.S. I’m 42, I don’t know how much age has to do with an easy recovery, it seems more like how severe the attack was. I’m sure some of the parents with kids will respond with their experiences though.

Welcome to the site Carol! You sound so positive and full of life, not a complainer – and if you were to complain, this is the place to do it so that everyone can be of support to you.

You really seem to be doing all the right things, exercising to keep your muscles from wasting is the best thing to do – not to mention socializing helps too;) . All I can say is that you carry on with the exercise and great attitude, hopefully those pesky nerves will start to show you a sign sooner than later.

Carol J we are very close in age. I realize that you are still having problems with walking. If there is any way you can get rehab in a pool, they are great for helping with strenghting all muscles, range of motion and balance. They give you enough support and there are devices you can wear to assure your up right position. I got so much out of aqua therapy. Being in the water took away the fear of falling and helped work muscles that were still too weak to stand or walk. Some pools are equip with paralell bars and some with chair lifts. They all have steps and rails to help the handicapped. Worth checking into some pools in your area. Maybe there is some one that can help you get intouch with one of the fitness centers or rehab places. YMCA or YWCA that have indoor pools. Check for referrals thru your local hospital. You are doing great with this site and once you are comfortable with PM or private messages you can use them too. Or you can email me at [email]yourpalkit@hotmail.com[/email] Put GBS in the subject line!

It is always nice to see someone from MN on the forum; so I would like to sincerely welcome you. I know what it is like to be in a wheelchair for that long, for me it was only through a miracle that I was able to walk again. I know what you mean by independence, I lost that for so long also. You will find so many wonderful people on this forum, I have friends that I still email or talk to after 5 years. I hope you will become a regular.
Blessings, Pam
BTW I also sent you an email, I hope you got it.

Carol,

Welcome to the Forums! Not much I can add, to what already has been “expertly” mentioned by our fellow GBS’ers, I think “mind over matter”, in your case is one thing to focus on. I mean, (you already seemed very determined and have a positive attitude). Yes, your nerves have been damaged. So, now, you must try to use your most powerful tool in your body……the brain…….to concentrate and communicate with the muscles directly, since the nerves are not able to send the siglnals as yet. And wriggling the toes is the place to start, as Gene said. Work your way up from there, until you are standing and then eventually walking. Aqua therapy would be a good thing for you as some of the others have suggested.
I am your age and I got hit with GBS Sept. 4, 2004. I recovered fairly quickly, but I wondered if I would ever walk again?!! But, I have, and you will too…..just takes more time for some. We all are still recovering and improving in different ways and areas.
Stay positive and know that we are here, and keep discussing your intent to walk again with your neurologist. (And all the other things you want control over)..

Per