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KarenNWendyn

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Joined
Jul 29, 2017
Messages
3,933
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Back in July/ August, I posted that my neuromuscular disease specialist felt I had a definite motor neuron disease, possibly ALS. However he didn’t want to officially confirm ALS at that time because I didn’t have much in the way of upper motor neuron findings and he also wanted to document disease progression over time. He was also considering PMA as a possibility. A second opinion at a university medical center didn’t add much.
Fast forward to followup neuro visit today. My disease has progressed to lower motor neuron findings in all 4 spinal segments along with very brisk reflexes and EMG now consistent with ALS in all regions. So the neurologist was able to confirm a diagnosis of ALS which was not at all a surprise to me.

The good news is he feels I am progressing slowly and should have many more good years ahead of me. Yeah! The other great news is that the EMG on the bulbar region (genioglossus muscle) showed only mild abnormalities at this time. That, along with the fact that my hands still function reasonably well, gives me hope that I can keep playing my beloved bassoon at least a little while longer.

I was a physician by profession, but I have enjoyed a parallel career as a bassoonist , playing professionally. I play principal bassoon in a great orchestra and retired from my medical career at the end of 2015 to allow me more time and energy to pursue my music. I know that with ALS, this will all come to an end sooner than I would have liked. However, I should be able to play Tchaikovsky Symphony # 5 (one of my all time favorite pieces) in January, and hope to still be playing in April when we will be performing Beethoven’s 9th symphony. So despite confirmation that I have a sucky disease, I actually feel rather hopeful.

I love this forum and look forward to more sharing and posting. Love you all.
 
So, checking into Edavarone?

Sorry that you've officially joined us. :-(
 
I have asthma, so I’m not sure about Edaravone due to possible sulfite sensitivity. Also my insurance changes in January, so I’m holding out a bit. Yes to Riluzole though, for what it’s worth. My neuro says Masitinib should be out soon.
 
Can't wait to hear about the performances! I look forward to reading more of your posts as the time goes on.

Angie
 
Karen I'm truly sorry for the 'official' diagnosis, but yay for slow progression. Silver linings, that's always the best to look for!

I've never been a classical music person as such, but I'm listening to Tchaikovsky Symphony # 5 and thinking many thoughts of you being able to play this xx
 
Sorry to have to welcome you to the worst club on earth. I too have a slowly progressing form. Once you wrap your head around things, you will find you are the same person you were before. Keep doing what you have always done. It's a tough road but it can be lived well.

Vincent
 
Karen,

First, thank you so much for your expertise on this forum. I'm sorry you had to find us but your attitude, sense of humor, and kindness is a great asset to the rest of us, here.

Will they be recording the concerts? I would love to hear them. I played piano, only by ear, but I understand your love of music and how enriching the experience of reproducing those lovely pieces.
 
Hi Karen,

I am so very sorry for your official diagnosis, however, the silver lining is that it is slow progressing. For that, I am so pleased for you.

I think it's very cool that you play the bassoon and hope that you will share some of your music with the forum.

Take good care of yourself. Hugs to you.

J
 
Thanks everyone. I pretty much figured out I had ALS last summer based on long discussion with NMD specialist and my own intensive research, so confirmation of the diagnosis at this time was not as much of a shock as it might otherwise have been. I’ve spent the last 5-6 months coming to terms with it, so it was actually a relief to finally have the diagnosis confirmed, and I now feel I can move forward with it. This forum has been a great help.

To those who may not be “into” classical music but wish to develop an appreciation for it, I recommend starting with the two Disney “Fantasia” movies. And of course going to recitals and concerts in your area. Tillie, Tchaikovsky Symphony #5 is a long 4 movement work that is best appreciated by listening to it a few times. That’s so neat you might want to hear it.

As for my own performances, there are a couple YouTube videos of the Rogue Valley Symphony I’m playing in, but it’s not me specifically. I couldn’t figure out how to copy the URL of a YouTube video featuring just myself and a couple colleagues, so I wrote the link in the space below. My bit (including me speaking) starts approximately 11” into the video. My apologies if I didn’t get it downloaded properly to this site (I’m technically challenged).
 
Oops. My link didn’t work. Maybe someone with great patience can walk me through downloading a YouTube video when I don’t have an account with Facebook, Twitter, or Google +.
 
Karen,
Send me the link
[email protected]

This is not my primary e-mail address so I'm not worried about posting it on the forum. Plus I taught online for years and thousands of students know where I live and know most of my business :lol:
 
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