New GBS sufferer, my story after 18 months; advice please!!!

Hi Nigel,
The ncv/emg would be a good reference point. Cidp usually happens to both sides, but there are variants and no one person is the same. If it is cidp, be open to this docs suggestions, he seems very reasonable, as some docs start w/steroids because they are cheaper. Your doc is advising ivig first that is very good. Good luck to you.
Dawn Kevies mom

Hi Nigel~ Welcome to the forum! So sorry that you had to go through all this and I do pray that you will see the Piano again playing like you once did. It can be very depressing to see your dreams and your goals get ruined by all this. But I hope they can get you back to normal again and you get to have the life you once had before GBS took over~ Nice to meet you Nigel~
Linda H

Hi NigeL: I had GBS and won’t comment on whether it could be CIDP. But for 18 months out you sound like you are doing really well. It is too early yet, if you are in fact recovering from GBS and not CIDP, to know what will come back and what won’t. I heard a neurologist speak this past week on the two year rule and there is reason to think what you get back in two years will be mostly all you get back, but there are many exceptions. even with CIDP there is the possibility of remission.
All of us who have suffered from these diseases know what it is like to loose dreams and to make radical changes in life styles. Many of us find we like our new lives, but it can be depressing to think of what is lost. I hope you will take the time to deal with your mental health as much as your physical health. It is helpful to have someone to talk with, especially when life feels so empty. Life is never empty-we may have to make serious change, but there are usually powerful rewards for doing so. It isn’t easy though, so you might think about getting some help during the dark times. Good luck. Jeff

Hello Nigel and welcome. I got GBS in October of 2007 so we are close to the same time frame. There was a guy on here for years that has passed away that would say he got his feet back around the two years that Jeff is talking about. His name was Gene.That gives me hope as it should you also. My feet have been problematic for me. My Gbs stopped short of a vent,my feet were so bad I would wear shoes all day and night.I was a saxophone and Bass player in a christian praise team. I have been asked to perform at church in the end of June.I have not picked up my sax in over a year so this month I am going to start playing again. I think I should be able for the only thing left for me is my hands get tired fast and my foot pain that feels like walking on marbles.I hope that you can get a firm diagnosis so treatment if necessary can help you regain your hands. Have you tried any ocupastional therapy? (OT) therapy. That was very tough for me but I had an awsome therapist that worked my hands with splints and rubberbands and all kinds of stuff.
I hope you keep a positive outlook along with your determination to get treatment and diagnosis.
ron Ps was wondering how old are you? I am 54

Hi Nigel! Never give up Hope! Hope can take a person a very long ways. It is your dream and desire that makes you want to play and because of that dream it will make you fight even harder to get well again! You have a goal set and because you have not finished that goal. Your going to fight every inch of the way to make that dream come true!
For some of us it takes a little longer and sometimes we don’t always become back perfect again. But this gives us a reason to become stronger and have that desire to do things that we can’t do therefore we end up somehow someway ending up doing it!
Stay positive and don’t let anything get you down. Good luck dear~ I hope that you get to see that piano again and hope to someday see you playing! Hugs
Linda H

HI Welcome to the gang
All I can say is you gotta keep trying an if worst comes to worst it reminds me of a Mash episode where this concert piano ist lost his left hand an he learned to play sheet music made for 1 hand an even started writing music for the 1 hand.
All I can say is you gotta keep going.
I lost almost everything as I went all the way down an I made it back about 75%. I doubt if I ever get the full use of my hands

Hi Nigel, Welcome to The Family!! Never give up Hope!! You will be back to tickling those ivorys in no time!!:D

Hi Nigel,
Your story is quite fascinating. I look forward to the day I can walk again. My right hand is as you describe your left. My neurologist used to tell me to pretend I was playing the piano to get my fingers moving again. My bony-hand look is starting to improve with a series of exercises my terapist has taught me. You may want to consult an occupational therapist, they can help you.
Your ability is a gift. If you can’t play, you may be able to use you knowledge and talent in a different way. Life is still worth living. Don’t let this disease get the better of you. I hope you can play again.

I am 69 years old and have had GBS three times, the last time in 2002. I can play my piano but don’t do it much as I get tired sitting at the piano a long time. You can get better after two years. Good luck to you.

Hi Nigel! The chances of getting it a second time is there but extremely rare. Staying away from vaccines are one good option of protecting yourself from getting it again.Make sure you talk with every doctor you see and tell them about the GBS and get their advice before having any procedures done. You will see frustration and get angry that you can’t do things but in time things will get somewhat better. I think your determination is going to be what pulls you through! God bless!
Linda H

Keep the faith Nigel! Keep the faith and hope! Never let that go! Will power and determination is going to get you back on your feet! Anytime you get frustrated and feel like you need to let it out! We are here! One thing about this site is the good support that we all give to each other. We don’t always agree with each other and have differences sometimes but we all have to admit that there are times when we are needed in here. If not for ourselves but sometimes just to help others! Glad you have joined the site! Hugs
Linda H

Hi Nigel, I just read through your entire post this morning, and I certainly sympathize with you.
I’ve been a music teacher for about 25 years–piano and guitar.
I’ve had GBS symptoms since my flu shot in November 2007, and I’ve got a lot of crippling; my doctor has ignored my symptoms and this whole experience so far has been hell on earth for me.

As you can see, this site is set up to be supportive and informative, as much as we know how to be for each other.
So here’s my input.

You played Chopin and Beethoven in concert, and recorded too!!!
That’s wonderful! I’ve often performed in public, but mostly I’m an instructor, though the GBS has changed everything for me too.

I just want to ask you some questions?
Right now your big problem is your left hand, right? Can you still play 3 note chords, 4 note chords & ascending and descending arpeggios with it? Can you still play your warm-up scales and regular Hanon exercises? Is it a strength issue, or a control/co-ordination issue or both? Are you right-handed or left-handed, and what size are your hands? Narrow, regular or broad; long or shorter fingers?

My own ability to play piano and guitar has been greatly reduced because of muscle weakness, control and co-ordination issues. Yet, some days are better than others. However, because I play and teach guitar (including classical), my own left hand is stronger and better-developed. That’s because it takes strength just to hold the fingers properly over the frets, place them exactly behind the frets, and press firmly enough to create clear sounds. If you are willing and able to do this, I would highly recommend some basic left-hand guitar training with a classical guitar instructor. The exercises could strengthen your left arm, wrist and hand as the hands of a musician need to be strengthened. You seem to have lost basic left hand strength, and the finger-curl you are describing might actually be useful in assuming correct classical-guitar playing position in beginner’s exercises, which could be beneficial towards improvements in your left-hand strength and control over time (and for piano).

Now, I know it is hard to be/feel diminished in your performance, but do you still have any of your early training sheet music pieces by the composers you love? I’ve found some comfort in that; in some things I’ve had to go back to the basics again. You could improvise or alter that left hand part, re-creating a basic LH chording or arpeggio structure, while you play the RH at a much higher technical level of expertise.

I know that this illness has aged my hands by 20 years; but sometimes when I’m trying to put things in perspective, I realize that things would have changed anyway, over time, especially as I got older, and the skill I had taken a lifetime to acquire would have diminished and been lost. I try harder than ever now to pass on the knowledge and experience I have, to the music students I still have left. Music is a wonderful and powerful gift, and I’ve been blessed to have and share what talents were given me. But even though I’ve changed, and things have changed for me, music will continue in its many forms. I’m adjusting to these changes, still trying to overcome my losses, looking for ways to keep reconstructing what is left to work with.

The mental and emotional toll this illness takes on us is terrible.
But life is much more than our musical talent and expression, so embrace it.
What we are learning now will be much more difficult than presto/allegro scales and complex counterpoint. Remember the frustrations and struggles of the days of our early training, and then again in the intermediate and advanced levels?
God will see us through all of this, as our Teacher and Comforter.
Take good care of yourself.
Bye for now.
–Donna

Nigel,

I have had the “priveledge” of going through Guillian-Barre Syndrome twice. I had it diagnosed in 1994 and then again in 2007.

Both events with me were following extremely stressful periods….studying for final exams the first time, and surviving through a horrific ice storm the second time.

I’ve read your posts with interest…I too used my hands as a “gift” if you will. I typed words in a Courtroom setting at speaking speeds I have adapted and use a stenomask. With that I’m able to dictate words in the same Courtroom at any speed and then type those words later in written format. I use a standard keyboard and can type around 100 words a minute now…and always getting faster.

When I was in rehab, I typed for my occupational therapist at less than two words per minute…2!!! Now, I am able to complete my transcripts on time, and with no delays in time (my last one was almost 800 pages.)

I write this because I don’t want you to lose the idea of playing again, and soon. Frustrated at times? Are you kidding me, one week I was pulling people out of homes and performing rescues in the ice storm, the next week I was started on tube feedings that lasted over a month….and so on and so on.

As hard as it is, keep going. No matter what. Rest is exactly what you need, but when you’re ready, hit it hard, and work towards your goals.

I’ve been able to work on building a house for my wife and little girls….I’m ALMOST done. I began stretching carpet just this past weekend.

Again, hang in there and be safe.

Hi Nigel, I have a “slow” left leg, and it was the first place my GBS started. Some days I feel like it is a foreign body. You sound like your recovery has been awesome. I am almost at 2 years. The NIH in the US came out with a study which showed continued improvement going on 5 years. That keeps me hoping. Some of my muscles look great, others still seem very limp. But I luv that twitching, usually means something positive is happening. Luv2sail

Thanks for posting again Nigel, we’ve all been thinking about you and praying for you. Come here often, because we know and we care about what you’re going through, and we’re here for you.

Some more of my thoughts (bear with me):
When you play the piano now, are you playing tense or relaxed?
Set your fears aside, just concentrate on recapturing your joy of the music. Your brain is rebuilding a lot of connections, so be good to yourself during the healing process.

Some days I can do a lot, other days it’s too much for me. Lately, I’ve been pushing myself to try to learn some pieces I’ve always loved:
“Baker Street”, and some songs by Enya. Bar chords are hard for me too, but on an electric guitar, they’re smooth and easy with the right touch and technic. The amp does the work. If scale-work is too much right now, why not try some 5 finger position exercises, and let your brain redevelop these connections. Have patience…it’s happening, though we can’t see it.

Also, I find that I’m better when I’ve been eating lots of protein regularly.
My concentration and strength improve then. So when I’m feeling weaker than usual I eat ground beef meals, whole-grain cooked cereals & breads, scrambled eggs, and my strength goes up in a little surge which lasts for days.

Truth to tell, the first year of my GBS, I hardly touched my piano; I could hardly bear to sit down and fumble my way around on it. I could still play a little, but then suddenly my concentration would vanish and everything would be clumsy and shaky. I keep my hymn books on the piano rack all the time, and some of my favourite pieces and songs with meaning.
Nowadays, although my skill has diminished, at times there is actually more depth and feeling in the actual expression of the music than before. So in that way, adversity is good for the soul and for the soul of a musician.

Just the other day, I was able to play a more difficult piece, which is encouraging. It’s been 2 years of GBS for me too; I got the flu shot mid November 2007, and the symptoms started a couple of days later, the cramping a couple of weeks later, and by Christmastime it was full-blown.

Just be sure to take good care of yourself; we all deal with the mental and physical strain of coping with this condition, but like a wise teacher/musician once told his class and his audience….”We never, ever, ever, ever give up!”
Blessings be upon you for your well-being and for continued improvement!
–D.U.