Musician with CIDP

hey rodger

I’m a musician with gbs too. While I mainly play music where dissonance is the prime focus, I hope that playing ac/dc, ramones, neil young, etc. covers counts in your books.

Your message to keep playing (and fighting) even from a chair is inspiring! Your playing and singing sound tight! I just bought a glass slide to mess around with open tunings, however it would be hard to match the beautiful tone you get out of that dobro.

I would very much like to chat with you about how you persevere and continue to climb on to the stage:)

I invite you to please listen to some of my ‘recovery’ tunes. My favourite is my latest called ‘my babbling gbs’. All me except for the drum loop and yes I do admit to those vocals.

[url]www.soundclick.com/bands/default.cfm?bandID=1088068&content=music[/url]

Aside from the impact this bastard of a sickness had on my family, losing the ability to make music was the hardest to take. However, even when I was near paralysis I played my djembe for as long as I could most days. It was a great way to vent out gbs frustrations while doing something musical.

Cheers for the great story and video!

One year later and I’m back, a little mellower but playing nonetheless!
[IMG]http://i1198.photobucket.com/albums/aa444/northernguitarguy/BOTB_afternoon1486.jpg[/IMG]

You guys are in good company as Lance Abair has cidp and struggles with the same thing. Lance Abair is famous but if you have never heard of him I am sure that you have heard of his daughter Mindy Abair. She is awesome. I cried when I read about how Lance deals with all of this. He has a strong faith.

thanks for the reply. I haven’t heard of either, but I will look him up. It’s good to see people enjoy their passions despite cidp/gbs

For the non-believers out there, you might gt just enough back to satisfy an urge-don’t give up!!

Hi N Git Guy. I was a musician, too. I have fought my way through 17 months of being called a nut case… then spinal cord surgery due to misdiagnosis… and finally my doctor gave up on me because I needed too much of his time. After 2 years I felt very beaten and found myself thinking about the worst possible thing I could do. Finally, my journey lead me to the good people at PNA and I am waiting for the last few tests before treatment for CIDP. I miss playing my guitars, mandolin, violins, etc., too. Music was always such good medicine for me. Now, I take out my guitars and look at them, remembering how great it felt to play. I really miss my Ovation Patriot. Took me years to find the one I wanted and only had a chance to play it for a year before getting sick. Sure hope you keep going with the tunes and the instruments. After reading your message I now dare to think maybe, just maybe, I’ll be able to play a little again one day. I’m sure I’ll never have the classical technique I once had but I’ll settle for any ole song! Thanks for the encouragement. I was really slipping tonight and needed a little lift. Did treatment help you a lot? I’m very nervous about the treatment. Be well and keep pickin’!

Hi Cindy
I jammed today for about two hours. My drummer is just getting back on his feet as well so we took it easy (sort of). My condition is one where I wont be receiving any treatment. At present, I am told that I will have the residuals from GBS (though I say BS to that). As my hands were hardest hit, my guitar work is still mostly choppy. There’s still lots that I can play, as long as dissonance is a factor. We jammed some Soundgarden, the Clash, the Stooges and the Ramones today.

I hope your treatment gives you some relief. My friend Rory DOES have CIDP and he’s a guitar player. Sometimes he really struggles to play, but he says that after getting IVIG he’s good to play for a few weeks.

I looked up the Ovation Patriot. Very cool looking guitar! Do you have any gear to plug it in? I was thinking that with a couple of modulation pedals (like a Chorus, Flanger, Phaser, pedal) you could create some cool music by just playing some simple chords. The Edge from U2 makes good use of these and often he’s playing the simplest of chords. How about slide playing? Or perhaps you could have your guitar strung with ultra-light strings.

Myself I like the electrics. My favorite is a Yamaha SG and a Japanese Les Paul copy. Both weigh a ton! I remember coming home from the hospital and strapping on the Les Paul and almost falling forward on my face (I wasn’t worried about that, I instinctively kept the guitar safe!) If I knew I would come down with GBS I would have taken to much lighter axes, like a Charvel.

Thank you for the very kind words, you give me encouragement too! Stay groovy!

Really great to hear from you. I tried the ultra lights. Not much luck. My Patriot is one of the 176 made with electronics and it sounds great as an acoustic or plugged in. I sold much of my electronic equipment but your ideas are great. My hands are a big problem… have involuntary movement of fingers and sometimes they lock up. Makes playing really tough. I have a number of guitars from my professional days and just haven’t reached the point where I’m ready to sell them. Have a Mossman 12 string which I cannot possibly play. I love the sound of that guitar. Also have a Yairi DY90. Still have my drums but cannot get hands and feet to do the tricks they used to do! Know what you mean about the Les P. They are HEAVY. First time I strapped mine on I nearly tumbled forward, and after playing my first full night with it I had to get a shoulder massage everyday for 2 weeks. Decided my Gibson ES335 was an easier option. Sold it and sure miss it. Sorry to hear that treatment is not an option for you… but your attitude sounds more likely to accomplish the job! Studied music therapy for several years and there is real healing power in music and attitude takes you the rest of the way. Right now I do more listening than playing but I keep picturing myself playing… I often sit at the piano and try playing scales with my right hand. My voice was effected by my illness so singing is out. Haven’t been able to write since very early 2010. Recorded my last work in August 2010. Wasn’t my best… just a solo album with my guitars dedicated to my grandfather. I wrote Walk In My Soul The Gentle Way for him… he was Mic Mac. I consider myself fortunate inspite of the illness and the bleak prognosis. Did your friend get CIDP from the flu shot? I did. At times I get angry with all the changes in my life but I cool off quickly and remember how lucky I’ve been. You keep your chops up! Music is grace! Someone once told me that he who sings prays twice. Between music and chanting my mantra, I manage to keep fighting the illness. I sure hope the treatment works but if not I’ll figure out something else! Don’t stop the music! And thanks for answering my message. I was really down when I sent the first message… and seeing your response really picked up my spirits tonight. Never give up! Here’s a word for you to remember: josho. It means ‘ever victorious.’ Do you know Wayne Shorter and Herbie Hancock? They’re members of my Buddhist lay organization. Awesome players. Take care. c/

Hi Cindy

Sound like you are struggling, but your attitude will serve you well. I don’t think non-musicians could possibly understand how much is robbed when you can’t create music anymore. I tried to never give up. At first in my illness my djembe was my only solace. I remember putting on really heavy music, like Black Sabbath and TOOL and sitting there as long as I could. It didn’t sound very Ghanian at all, but it served to help ease my initial rage.
Wow, you sound like you have some very nice guitars. That Alvarez (Yari) sounds and looks beautiful! Does yours have the beautiful abalone work done around the soundhole? My only acoustic is a decent Yamaha that I had a bone nut and saddle installed on. I know what you mean about the 12-string, I already sold mine. It was nothing special (just an Art and Lutherie) and I figure if I change my mind I can always acquire another one. Sorry you sold the Gibby. I love the ES-335! I have a great Japanese copy, but I think I may trade it away for a lighter axe. I like the idea of a Gibson SG with P-90s (think Santana, Terry Kath, early Tony Iommi!).
My fingers lock up and don’t do as they’re told as well. For some reason, I have the worst time playing a basic D chord because my ring finger almost NEVER makes it where it’s supposed to go (it always hits the third string, if I’m lucky I muffle the second!) Hand stretches help somewhat, there is a good youtube video called ‘Essential Hand Stretches’ that I learned a lot from. I also have found that warming them up before hand can help a bit.
Have you seen ‘It Might Get Loud’? This is a very cool movie and tribute to the electric guitar. Jimmy Page (Led Zep), The Edge (U2) and Jack White (The White Stripes) are profiled. The movie explores their individual styles but also brings them together for a soundstage summit where they trade licks and talk influences. Seeing the look on the Edge’s and Jack White’s face when Page teaches them ‘Whole Lotta Love’ is worth watching alone (hint, they look like humble children in awe). You might like it, I really enjoyed it (and no you don’t have to be a fan, there’s plenty to like in this movie fr ANY musician).
Rory doesn’t know where he got CIDP or how. He just keeps plugging along and I’m really proud that he doesn’t give up. I’m glad you haven’t either. You may have to change how you play, but there could be a possibility. Perhaps the piano is your best option. Synthesizers can be fun too (I have an old Roland JX-3P).
I hope we can stay in touch. if you wish we can ‘meet’ here or I can send you my e-mail address.

P.S. Your Dad is Mikmaq? I suppose that means you are on the East coast?

Best

Photo of my ‘family’. The Strat copy is a rebuild that I did last winter when I really couldn’t play at all. It took forever, but now it’s a fantastic player. It kept me interested in guitars and I learned a lot.

Yeah! So great to hear from you today! Had the biopsy and EMG this afternoon. Docs are trying to get a definitive (beyond a shadow of a doubt) diagnosis so we can get on with treatment… you know how insurance requirements are. Was bummed when Dr L told me the EMG was normal. I cannot understand why so many tests can be normal and then others be so drastically abnormal. Have to wait 2-3 weeks for biopsy results but that might be the answer. Gotta tell ya, the pix of your axes really lifted my spirits! And all your electrics – yahoo! Strat looks great… they all do. I have a digital camera and can take pictures but haven’t got a clue how to get them from the camera into the ‘puter and then post them! Will ask my daughter to do it for me and so I can send you pix of my guitars. I still kick myself for selling the Gib 335. It’s one of those shoulda’s: “shoulda kept it!” My only electric now is the combo Patriot. Has a surprisingly nice sound either way. I also have a very nice Yamaha acoustic. For some reason, I fell in love with the sound of it and on many occasions have chosen to use it over the others during several recording sessions. I believe it’s the 375 model…. oh my sad memory. It is the cherry sunburst with the big body. Far as I know they stopped making that model some time back… I’m probably way off on that model number but you probably remember the cherry sunburst… very stunning look and well done… I’ve always thought it was their very best finish. I got a custom action job, gold Grovers, and switch off between Marquis lights and Silk n Steel. Every now and then I love the sound of the silk n steel strings. About your fingers and hands… learned an old trick from an elderly classical guitarist I met at a studio session at Pantheon Studios in Scottsdale/Paradise Valley, AZ, 1978. He was so smooth and nimble inspite of those old hands and I had to ask what his secret was…. raw almonds. He told me to eat 2 or 3 everyday, preferably in the morning before breakfast. Gotta tell ya, it seemed to work great. As bad as things are with my hands now, I believe it would be even worse if I hadn’t kept up with my almonds. There is a distinct difference between my pain level in the hands compared to other parts of my body. He told me there was some chemical in the almond that was beneficial to the muscles and ligaments in particular. He told me his grandfather taught him about the almonds. He was a true Spanish classical player. Maybe you could try the almonds and help your fingers. Can’t hurt! Be sure to use raw almonds. I usually find fairly large bags of them at the health food store for less than $4. Gib SG will probably be a lot lighter than the 335. I remember playing a 330 once and it was a tab lighter than the 335. The wood Gibson used was the best and tended to be heavy. Almost all of the semi-solid arch-tops were heavy. I originally lived back east. My grandparents were all from Canada. Maternal from Quebec and paternal from New Brunswick and Nova Scotia. I live in AZ now… but wish every single day that I was back there in the north country. I miss the clean air, small population, pine trees, ocean, etc. I enjoyed my stays in the big cities… did the big city thing musically but feel like I belong back home now… quiet, peaceful life. I don’t check my email as often as I should but here’s my email address: Pelletierc1@AOL.com. I agree in regard to the piano! Synthesizers were soooo fun back awhile. I kept 2 or 3 in my equipment van and got some of the craziest sounds. Interesting but good. Had all sorts of things – remember syn drums? We did one song that required the sound of a ricochet gunshot… used the 8″ syn drum and sounded so real it scared the tech the first time we used it…. neglected to tell him, slightly on purpose. He was not a happy camper but got over it and agreed it worked great. Will be away for 3-5 days traveling to several different docs. Having a surgical procedure in April and need clearance from certain specialists. Hope you stay well and try the almonds… remember raw only – no salt! Will check in when I get back. Keep pickin’! c/

DARODG: Sorry I hijacked your thread talking with NGG. Wanted you to know I watched your vid on Youtube and so enjoyed it. You and NGG have inspired me to try again and try harder! I wasn’t one to quit and my motto for most of my life was “never give up”… but this disease/disorder really knocked me down and pushed me around for awhile. Sure glad I kept fighting for help, found PNA, and this forum. When you post new videos would you please let me know? Sure would appreciate it! Thanks. Cindy