Dear Alma, I can’t hide my illness at work any more
UncategorizedFrom our agony aunt:
Dear Alma,
I am a wind player, middle-aged, with a job in an orchestra. I think I have focal dystonia, which hasn’t yet been diagnosed, despite repeated trips to various doctors. I have been trying to hide my inconsistencies from my section and orchestra for several years. I want to keep playing, and am beginning to get depressed and angry. I could just collect disability from my orchestra. I know there is no cure, and my playing is suffering and people are beginning to notice and ask if I am ok.
Should I Give Up?
Dear Should I Give Up?,
Firstly, get ye to a good doctor. Or several. You need to get to the bottom of your condition before you consider your next step. Be persistent and demanding. Many musicians with Focal Dystonia have to go through several doctors and neurologists before receiving a diagnosis which seems correct, and I would suggest getting 3-4 different opinions.
Secondly, if you do indeed have Focal Dystonia, please be aware that it it most likely that your orchestra does not consider this a disability and will not take care of you financially. Look into this closely (and quietly) before letting anyone know your suspicions or your diagnosis.
While Focal Dystonia has yet to have a cure, many musicians (Alex Klein, formerly of the Chicago Symphony, the late Leon Fleischer) have found a path through this terrible neurological disease, and found it to be liberating to some extent, encouraging them to branch out and to dig deep to harness their love of music, in whichever form they can manifest.
Thirdly, I would advise you to find your group of people. From your letter, you seem alone. Ask your doctor or local hospital for suggestions of groups of people dealing with disability, depression, anger management, or loss. You need someone to talk to, people who have been there and who can offer both conversation and a network of information. You need structure and support to take the next step. Find your peeps.
I have a recurring dream that my arms fall off and I can’t play my instrument anymore. You would think I would sit bolt-upright from sleep, crying and gasping, but au contraire. Seriously au. I wake up in the most peaceful mood, free from worry and never-ending lists of things I have to do, practicing that is behind schedule. It’s a moment when I know I am released, able to do these things I never have time for, to spend time with family or write a book, or take a long walk up a tall hill.
Lastly – it’s actually possible that you don’t have Focal Dystonia, just some strange, temporary issue. Don’t give up. No matter the eventual or short-term conclusions, you are in charge of your destiny. Take this moment to reassess your life. This could be the best thing that has ever happened to you.
Hello Alma,
This is Missing my Former Self
https://slippedisc.com/2023/09/dear-alma-in-my-40s-im-being-hassled-for-my-weight/
And I just wanted to check in and say hello! I have followed your advice, and joined a local club. It’s been surprisingly fun, and a good place for me to meet people my age and also have a legitimate excuse to nip away from my family for an hour or so a couple of times a week. I also got some runners and have had several nice long walks along the water. It I my am I feeling a bit more slender, but my mood is much improved. Thanks so much for your advice, and keep writing! We love to follow you!
Although “Slippeddisc” would indicate a medical problem, PLEASE discontinue this type of “news” because it is really inacceptable! One recent comment, questioning who writes such appeals to Alma, raised the suspicion that I have: Are these people even real? Whoever writes such “news” should grow up and seek help privately. It would also be a good idea to separate all the death notices into a subdivision of this blog so that the main emphasis may return to news in real time.
Dear Dixie,
It is an advice column for musicians. This is a serious topic and one that many musicians suffer through. Comments below yours are very helpful, and yours is not. This comments area is a great place to share ideas and advice. It is also a common question for all advice columns about whether the questions are from real people. It’s hard to tell but I have seen several questions from the comments (confused goldfish comes to mind) that have been answered here. Perhaps you, Dixie, need to address a question to Alma here and see if they answer it. How do we know if you are real yourself? You seem kindof fake. Is Dixie your real name?
Strange … I replied to your comment but my response was obviously not appreciated. Therefore, I will try again: I am NOT fake, I am a REAL person, and I am NOT obliged to give anyone my real name. If Dixie seems strange to you, at least I can tell you why I use it: I was a nickname that I had during my college years. Now let us see if the big boss of this blog is going to throw out this comment, too.
Speaking of strange names … Is YOUR name really Pixie? Unlike you, I am not questioning your existence nor do I expect you to make your real name public. So, the next time you read a comment from “Dixie” please refrain from questioning me or my blog-name to which I have just as much right as do you to “Pixie”. Attention NL: Please do not cancel this comment!!!
The Dystonia Medical Research Foundation can help guide musicians to skilled clinicians with experience with dystonia:
dystonia@dystonia-foundation.org
Wonderful!
Dear Should I Give Up?
Focal dystonia can be worked through! Please look up the Till Project online. Sophie Till has successfully brought many musicians back to playing, and her teaching is not restricted to violin. I am recovering from focal dystonia with her; it can be done. https://www.tillproject.com/
Good luck
Ed
This is great information!
Sophie is the real deal. Her work is unique and groundbreaking. She has lots of online videos but obviously the work is best in person.
Excellent tuba player in town suffers with focal distonia. He has tried valiantly to work thru it, but he seems to be more depressed every time I see him.
One of my tuba teachers developed focal dystonia a couple of years after scoring his dream job, at the peak of his powers. He said to me that he woke up one morning and knew that he could not control his articulation. He persisted for a few months with no success; this was several decades ago. He was told by the orchestra and the union to attribute his problem to a nervous breakdown to enable access to pension and disability entitlements, but it was focal dystonia. I never heard him play live, only on recordings. A terrible loss to the music world.
Tell your friend to contact Jan Kagarice (USA), trombonist. She has helped many with focal dystonia.
He should follow some advice above. Find a support group. It must be very upsetting!
Disability pay from an orchestra… what on earth is that? ( UK)
It is offered in larger organizations.
The most knowledgeable expert on musicians’ dystonia is neurologist and movement disorder specialist Dr. Steven Frucht in New York City. He is the leading expert in embouchure dystonia but has vast experience treating musicians with other types of dystonia.
Thanks for sharing.
Gee, what a pity no one can figure out what to do with my comment of 7 October! No one home in the decision-making department … or just a lack of courage/common sense=
Dixie – your comments aren’t really that helpful. Sorry to rain on your parade.