EMG today - ouch!

[Diane63]

Rheumatologist ordered this test.  Doc who did it said he sees no real problem with my muscles and believes it is brain/CNS stuff.  I mentioned before on this board  that I had a "stroke that wasn't a stroke" back in December and still have residual effects from it on my right side.  Also lousy balance - lurch/fall to the left.  So it appears SS has struck again.  I know I am so lucky - some of you wonderful people have it so much worse.  Not to sound ungrateful, but I have been a classical pianist all my life (well, since age 4) and I can't play anymore.  My piano and all my wonderful music just sit there looking at me.  The music and my therapy dogs have been my sanity for so long.  Has anyone else been able to play again after a Sjogren's CNS major event?  I don't meant to be mopey and bitching.  I guess I'm just sad about the losses all of us feel.  See the rheumy tomorrow and we'll see what comes next.

Thanks for listening.  Diane

[Gayle]

Sending hugs Diane,

PLEASE, do not accept the evil of this as then the evil wins. I am not saying you don't have this, it goes away, it is not real. I am saying, you can use your wonderful talent. It may be that you play again for crowds or it may be you please yourself. It might be that you are a wonderful teacher, mentor or hero for a young musician. All worthy crowns to wear. This can not define you, it is just a part of you. Just like music does not define you, it is a PART of you!

Many hugs, prayers and know, we will want to hear you play one day!
Gayle

[Diane63]

Thank you, Gayle!  Your words bring tears to my eyes.  The last few years I have been playing for my own pleasure and taking more lessons because it's just fun!.  I miss it so much, my heart hurts.  But you are right - there is more to me than just that.  One thing I thought of when I read your post - although I am not playing now, song lyrics come to me in my sleep (a gift from the Spirit I believe) and I write them down and a friend who is a professional musician makes the music and records them for me.  This is a new thing - maybe God's way of giving me back something I thought is lost.  Thank you so much.

Diane

[sass]

Diane...Blessings to you...when one door closes, throw open the window!  You have gifts that are abundant.  I cannot play or sing.. I took lessons for 3  months when I was 16 and learned one tune called Dancing Leaves I think....hand over hand ...I can impress a few in the opening and then bow out as If I am modest and refuse to play anymore...as if I could...lol

My son plays guitar and I sit in amazement.  I have prayed for God to give me a voice to at least sing, but alas, he has enough musicians and must have other plans for me.   But truly, I have so much music in me.  I feel like I should be a natural, but I guess no training, no ability....

Please stick with it, in whatever form that you can. Writing or singing or hearing it in your head and I think you will play again...I only wish I could play once!  Maybe it was Whirling Winds...I once was an artist, but no more...But one day, God Will reveal my talent.. I keep looking..I have a talent of procrastanation...not the one he has in mind for me i think.

And yes EMG's are ouch!       ~sass~

[Gayle]

Diane!
You can write a lot! Wel, if you take naps like I do!! I am sure you are right about the dreams. DO IT!!! JUST DO IT!!! You could be one of the worlds best song writers and now I know you! LOL
Hugs and smile! You are doing great!

Gayle

[jazzlover]

Thank you, Gayle!  Your words bring tears to my eyes.  The last few years I have been playing for my own pleasure and taking more lessons because it's just fun!.  I miss it so much, my heart hurts.  But you are right - there is more to me than just that.  One thing I thought of when I read your post - although I am not playing now, song lyrics come to me in my sleep (a gift from the Spirit I believe) and I write them down and a friend who is a professional musician makes the music and records them for me.  This is a new thing - maybe God's way of giving me back something I thought is lost.  Thank you so much.

Diane

That's wonderful! I understand about your loss. I would say most of us "get it" because we've all lost so much.

I will have an EMG on Friday. Can I take a pain pill before I go??

[slccom]

Diane, I am a musician also (albeit a mediocre one) and understand your grief. Do you know that there is music written for one hand? You might want to look for that, and also see a physical therapist. The brain is amazingly plastic, and the more you work your weak side, the more it will improve, even for years to come.

http://pianoeducation.org/pnoonhnd.html

Get the easier music for your right hand as part of the therapy. It will be frustrating at first, and you need to use some perspective on your progress. Don't ask, "Am I better than I was yesterday?" Ask, "Am I better now than I was 3 months ago?" You might even want to record a practice session, and then record another one 3 months later, and then listen to them for objective proof.

I love, love, love the part about the lyrics coming to you. I had a similar experience, and it certainly wasn't coming from me! It came through me. Keep looking for those windows!

Hugs, Sharon

[Joe S.]

I remember reading the story of a famous stage magician that learned to do his illusions with just one hand. He had suffered some thing like a stroke. It took a lot of practice but he did make it into the big time circuit.

While it would not sound exactly the same, you may be able to play the tunes with one hand. With today's electronics, you could lay down tracks on a midi recorder and play duets with your self.

My mother played piano and organ for many years. She had been helping out at home with the sausage making when her fingers got stuck in the electric grinder. Grandpa pulled the plug and reversed the grinder to get her fingers out. It took months for them to heal but after they did she played again for many years.

"Never give up. Never surrender." - Tim Allen from the movie Galaxy Quest.
"Where there is life and breath, there is hope." - Doctor Who.

[Diane63]

You guys have turned my day around!  Sass, you are hilarious - and it is truly amazing because I have read what you are going through.  And Gayle, Joe, Sharon, bless your hearts, too!  I know of the music for the left hand but never thought about it for myself - I'll talk to my teacher about it - I'm sure she'll be able to help.  The physical therapy wasn't real helpful although I think my hand got a little stronger but not too coordinated.  You should see me around the house - knocking things over, accidentally smacking a dog in the face (they are so sweet and tolerant), holding onto the walls as I go down the hall.  It is fairly comical.

Jazzlover - don't sweat the EMG.  It was ouchy at points but not enough to get really worried about.  The thing that hurt the worst, as always, is having my blood pressure taken - between the SS and fibro even hugs can be painful.  These message board hugs are great - don't hurt a bit!

Thank you so much, people.  You are my role models.

Diane 

[slccom]

Diane, the coordination will come back with time and patience. In the meantime, what you describe is pretty much my whole life. I had brain damage at birth, and my balance and coordination are definitely sub-par. So, I live pretty much in damage control mode.

My date book is paper. When I drop it, it doesn't break. I use hand rails and lightly trail my hand on a wall as I walk down a hall to try to walk something vaguely approximating a straight line. I have perfected the art of apology when I bump into or hit people, or come close. ("I'm so sorry -- shall I try again?" When said with an apologetic grin, it almost always gets a laugh.) My drinking glasses are plastic, and when possible, I use something with a lid on it to minimize spilling. I wake up with new bruises and scratches, and usually have no idea where they came from unless it was a truly spectacular event. My dogs, well, they try to get out of my way. And they don't mind the apology that follows the unexpected contact.

Really, this is all just part of being me. It is no big deal. In your case, you can probably get back to close to your old normal with persistence, creativity and generally being stubborn.

Keep on keeping on!
Sharon

[jazzlover]

Thanks, Diane. Tell your Dr to get one of those wrist BP things. I have one at home and they are GREAT!!! My new neurologist also uses them.