2 years and as good as it will get.
AnonymousSeptember 19, 2011 at 4:52 pm
😉 Been gone awhile, but not a whole lot has changed. 2 years with GBS and still no feeling in hands and below the knees. But you know life is great when the grass is under the feet. The only thing DR. Sheik could tell me is there will be good days and bad days. He is right, but sure wish I could maintain my balance without a cane.
AnonymousSeptember 19, 2011 at 11:39 pm
Don’t give up hope for more improvement. There’s still a couple of years for sure, and even in later years, people have reported positive changes in their condition.
Do you do the rehab exercises to recover or increase your range of motion?
If there’s one thing I wish I’d known when I first got GBS, it is that you have to work hard and regularly to reverse the damage, but not overdo it of course. All these months with my hands becoming more and more locked in rigor, and I haven’t know what to do but wait and endure it, and hope it would get better. But it hasn’t gotten better, only worse, until I began to do the exercises to reverse the crippled state my hands are in. And I see some progress. And it’s going to be a battle to keep the use of my hands. It’s a hard and painful fight, but if the price is pain, I’m willing to pay it if I can improve the mobility of my hands and the rest of me.
Do you try walking without the cane? I needed mine for the first 3 yrs. but since then I’ve grown strong enough to walk indoors without it. But I have to accept the dizziness and wobbling while learning how to walk again in my new way. This year I decided I’d only use the cane if I needed it for my safety indoors, or if I was very tired or in more pain than usual. So I’ve been re-learning how to walk without my former total dependancy on the cane, and as the months have gone by, my gait has been improving. I’ve decided on a new challenge lately: taking out the garbage without my cane and walking around my patio and garden without it. And although I’m staggering and wobbling and my steps are slow and laboured, I haven’t fallen down, and I’m getting some of my balance back slowly. I’m hoping to walk up and down my street without my cane. I tried it lately, but it was really hard; however, I’m building up my strength and soon I want to take it on as a regular part of my day.
Just hoping some of these suggestions may work for you; I know we are all different, but we are all in this together.
AnonymousSeptember 20, 2011 at 2:20 am
Two years is a little bit early to make that kind of judgement call. I would at least say 5 years and there still may be some improvement even after 5 years. Just hang in there and enjoy each day we are alive. I was watching IRT on tv last night and this trucker said he has a coffen on his porch and as he goes out the door to work each morning he touches it and that kinda puts things in perspective for his day. He said you can’t appreciate life until you imbrace death. We all have such a short time here on earth Pat. Just dwell on all the good times we have with one another and especially the family. I think we all have moments that…we think this is good as it is gonna get. That is ok to think sometimes as we all are human, but just don’t stay in that frame of mind. Good to see you again Pat. I too stay away from here some times, but am always glad to stop in from time to time and see if anything new is in the makings that might help us all. Only thing tho…when I am away for a few months and come back here again, it really hurts to see all the new faces that have come here for help of all kinds. I really feal sad for those who have just met us on this forum. I just know they are just beginning their journey and it is sometimes painful. I gotta go now.
DU… that was a very good post !!!
AnonymousSeptember 20, 2011 at 1:31 pm
Drummer and DU, you’ve said what I often intend to say at times, but back away in fear I might step on someones’ toes. You’ve hit my nails on their heads.
It has been said by my wife and others, that only through a good sense of humor have I traveled these last 34 months. Nurses commented that their job was easier, when I made some kind of silly verbal comment or possibly an ornery roll of the eyes.
I can spend hours now, laughing about my problems, which were many. Having spent over two months on the vent, when the respiratory therapist put the doohickie in my throat apparatus so I could ‘voice’ a few words, he asked me to ‘say something’. Out of the clear blue sky I surprised myself with a loud ‘ahh, ****’. The therapist is still laughing because my response was in no way what he was expecting. Two nurses turned tail, not knowing what was next. Kinda funny now, but————-
I’ve put GBS in my folder of, ‘wouldn’t take a million dollars for the experience but wouldn’t give a penny for another half dose’.
I hope no one in the throes of GBS take my comments in a wrong way. I only wish everyone quicker, less painful, FULL recoveries. And that also goes for the caregivers.
AnonymousSeptember 21, 2011 at 3:13 am
A good sense of humor reallly helps with this GBS stuff. If we fall down while trying to walk, laugh about it and if we pull someone down who is helping us laugh about it, as long as no one gets hurt. I make jokes all the time when I am out it public, and it embarrasses my wife and sometimes she will walk away from me as quick as she can. 🙂 Most all, if not all, of my friends have a good humor. It makes life sooooo much easier when we laugh.
AnonymousSeptember 21, 2011 at 8:10 am
[QUOTE=Drummer]A good sense of humor reallly helps with this GBS stuff. …… It makes life sooooo much easier when we laugh.
I agree 100%!! Had I lost my sense of humor during the first few and rather scary months, I don’t know how I would have fought the depression.
Pat G.: I’m 20 years post GBS and never set a timeframe on things returning. Sometimes I’m amazed by things I try and achieve. I’ve realized that the fear of attempting and failing was probably as paralyzing as GBS. Now, I’ll try things and if I can do it; great! If I can’t, oh well, there are other things I can do. I also try to think of my issues as the new normal and trust me, that helps a lot! I wish you all the best!
September 21, 2011 at 10:21 am
It was good to read how humor helps coping with this illness. I have just started using some, but my humor is only meant to be facetious in nature. I hate this illness. It stole my life as I knew it, wiped out half my savings (Medicare only pays 100 days of rehab), and nearly killed me. And I spent 14 months both in hospital and rehab. Aside from that, everything is peachy keen. (See what I mean about the humor?) So forgive me if I cannot connect to the sunny side of life. I’m two and 1/2 years into this illness and my lower legs and feet still suffer from paresthesia (numbness and tingling like legs that fall asleep but never come back down to normal) and I have a slight tremor in my eating hand. There is no medication for these things. I know that 80% of patients make full recoveries, but I am pessimistic about my own case which has gone past two years. So I decided to just stop thinking about full recovery and just live day to day. This was such a relief. I realized that thinking about this every day allows the illness to victimize you twice. I wish I could take on a brighter side, but I cannot. It’s hard, when you lose your independence to do the simple things you always did before this illness. The other day I called the handyman to change a ceiling light bulb. It broke my heart. It took 30 months to make my first joke when my brother asked where I was going the next day (I use a cane or walker on the streets). I gave him a one word answer: BOWLING……he paused and then laughed. But in my mind it was facetious. Take care folks.
AnonymousSeptember 21, 2011 at 12:38 pm
Hedley, I absolutely understand what you mean. This illness struck me when I was 25 years old. Prior to that, I was healthy, athletic, outgoing, active, and financially stable (for my age). In one fell swoop, I lost everything.
I worked for a subcontractor and my employer separated from the company shortly after I was released from the rehabilitation institute, thus preventing me from completing out-patient therapy. I couldn’t afford COBRA as I didn’t have any money and no income as the company didn’t offer short/long term disability. I couldn’t obtain state medical insurance/assistance as I’d made too much money that year (um, okay). I had/have no support from my family, friends started disappearing into the woodwork and had it not been for a couple from my church, I would have wasted away in a nursing home. They took me in and did everything for me. Literally. 😮
So yes, this illness pisses me off too! I lost the ability to play sports, run, walk outdoors without using a cane and/or AFO, walk on grass or even go for long walks without fear of falling and lacking the ability to get up without substantial support. I can’t wear cute shoes because of the AFO. My self-esteem and self-worth dwindled as what guy would want a woman with my issues?
Please, please know that I’m not diminishing how you feel, especially as I can relate as I felt that way almost daily for years. It’s depressing, humiliating and devastating to have almost every aspect of your life (including personal care) orchestrated by GBS.
Fast forward 20 years. I still lament losing the ability to be independent, but you know, “that which does not kill truly DOES make us stronger.”
I truly wish you the best!
AnonymousSeptember 25, 2011 at 1:09 pm
Touche’ for all with the humor on this post. I’m just tired and not very witty this morning. All I know is that I have started using a cane recently and it has helped a lot with balance and fatigue. I got some spray paint and painted my cane a bright purple! It is amazing the signal this gives people… having a “but you look just fine” illness. I do not look for sympathy but having someone keep a door open for me means a lot and I am very grateful.
You have found a very special family in this forum. We are all here for each other!!!
September 25, 2011 at 4:34 pm
For those with balance issues, please note the following: My balance was improved to the point where I can walk unassisted room to room and with a cane. A machine helped me, along with a therapist who knew how to use it. The machine is called the Balance Master. Most large rehab places and hospitals of some reputation have them. It took a few months to get my balance back, but it was worth it. FYI.
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