Old 12-06-2017, 10:19 PM #1 (permalink)
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Default ALS diagnosis update

Back in July/ August, I posted that my neuromuscular disease specialist felt I had a definite motor neuron disease, possibly ALS. However he didnít want to officially confirm ALS at that time because I didnít 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 didnít 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 Beethovenís 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.
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Old 12-06-2017, 10:27 PM #2 (permalink)
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Default Re: ALS diagnosis update

So, checking into Edavarone?

Sorry that you've officially joined us.
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Old 12-06-2017, 11:23 PM #3 (permalink)
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Default Re: ALS diagnosis update

I have asthma, so Iím not sure about Edaravone due to possible sulfite sensitivity. Also my insurance changes in January, so Iím holding out a bit. Yes to Riluzole though, for what itís worth. My neuro says Masitinib should be out soon.
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Old 12-07-2017, 12:12 AM #4 (permalink)
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Default Re: ALS diagnosis update

Can't wait to hear about the performances! I look forward to reading more of your posts as the time goes on.

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Old 12-07-2017, 12:55 AM #5 (permalink)
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Default Re: ALS diagnosis update

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
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Old 12-07-2017, 01:21 PM #6 (permalink)
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Default Re: ALS diagnosis update

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.

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Old 12-07-2017, 01:33 PM #7 (permalink)
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Default Re: ALS diagnosis update

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.
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Old 12-07-2017, 03:16 PM #8 (permalink)
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Default Re: ALS diagnosis update

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.

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Old 12-07-2017, 07:35 PM #9 (permalink)
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Default Re: ALS diagnosis update

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. Iíve 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 ďintoĒ classical music but wish to develop an appreciation for it, I recommend starting with the two Disney ďFantasiaĒ 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. Thatís so neat you might want to hear it.

As for my own performances, there are a couple YouTube videos of the Rogue Valley Symphony Iím playing in, but itís not me specifically. I couldnít 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 11Ē into the video. My apologies if I didnít get it downloaded properly to this site (Iím technically challenged).
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Old 12-07-2017, 07:37 PM #10 (permalink)
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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 +.
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Old 12-07-2017, 08:18 PM #11 (permalink)
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Karen,
Send me the link
kbeldencpa@gmail.com

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
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Old 12-07-2017, 09:11 PM #12 (permalink)
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