 The Clarinet BBoard
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Author: Katherine Handcock
Date: 2001-10-05 01:56
Hi there,
As part of a masters program, I've been assigned lessons with a student who has fibromyalgia. As a result of her condition, she's not able to play for long periods of time, so we've been doing multiple short sessions every week. I was wondering if anyone out there who has or has taught someone with fibromyalgia might have any suggestions for techniques that she could try or therapies that have worked to help her control pain. She doesn't experience pain as she plays, only afterwards, so we have to be very careful about not overworking. If anyone has any suggestions, I'd appreciate it. Thanks in advance.
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Author: Mark Charette
Date: 2001-10-05 02:10
If you check in the Resources section you'll find some references to medicine and music. Perhaps some of those links can help.
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Author: Jim
Date: 2001-10-05 03:41
This condition can respond positively to medication (my wife has it) a full medical workup might well be in order if she has not yet had one.
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Author: dennis
Date: 2001-10-05 03:47
Katherine......Perhaps I can be of some assistance. I, too, am physically challenged. Having suffered a fractured neck in several vert, a cervical fusion and subsequent cord damage, I can relate to the pain element , physical and musclular limitations, etc. Although I'm on a morphine sulfate I have ' break through' pain and that is addressed with something else. Without belaboring any issue here, if you'd like, please feel free to contact me directly at wtail9@aol.com. I'd be more than happy to hopefully help you in addressing your concerns. regards dc
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Author: Katherine Handcock
Date: 2001-10-05 10:49
Hi again,
Thanks for some quick responses. Just to give you guys a little more information:
She's actually had several medical workups, but unfortunately they haven't had much to offer; the pain medications they've suggested haven't worked very well, and some of them produced very bad side effects. She also has problems with sleep disturbances--apparently, that's sometimes associated with the condition--which obviously doesn't help. She has sleeping pills for getting to sleep through pain, but they only get her to sleep, they don't stop her from waking up later. None of her doctors have suggested any alternates to medication, so I'm scouring the web etc. for other possibilities for her.
The real problem is that she needs to complete two lesson/jury credits in her undergrad program to stay in it. If she doesn't, she gets shunted into a more general program, which is supposedly more flexible, but requires lots of electives outside of music. If she ends up in that program, she'll have to overload to get all the music courses that she wants, and that's very difficult--my husband did a year with 120% course load, and it was fairly miserable. Besides which, she really enjoys playing. So my big goal is to help her through one of the lesson credits, but I'd also just like for her to be able to play well again, even if it's only for fifteen minutes at a time.
So that's the situation as it stands. If you have any more suggestions based on that, I'd appreciate it. Thanks again
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Author: Lynn
Date: 2001-10-05 15:54
Katherine,
Bless you for caring and helping her.
Lynn
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Author: Bob Arney
Date: 2001-10-05 15:59
I am one of the "Sneezy" folk afflicted with fibromyalgia. There is at present no cure for it, nor do they really know what causes it.From what I have been able to determine it may be associated with a breakdown of the immune system and seems to come and go, in "flares"; not always affecting everyone the same. Some have called it the "Eighteen Wheeler" disease. In one of it's full blown flares you can feel as if you have been hit by one There are some medications that can help molify the pain but which leave you in no condition to wish to practice. You feel like a piece of "chewed string." Sleep loss is almost a constant and contributes to the stress associated with the cycle of the disease.
IMHO being booted out of the program and forced into a "general" will add more stress which, in turn, can contribute to more pain and overall lasitude.
I am not familiar with "lesson/jury credits" Can additional academic work (such as courses in theory etc.,) be considered as a substitute so that when practice is not physically possible, course work could be completed as a requirement?
Bob A
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Author: Peter
Date: 2001-10-05 16:55
Have you tried talking to the powers that be at the school? I mean, about allowing this person a more user-friendly schedule?
Under certain, extreme circumstances a school should be approachable to make time/constraint requirements easier on such a student.
As a veteran who visits the VA regularly and sees, first hand, both the misery and the joys of the handicapped, I am a great believer in that the handicapped should be motivated, if not "driven" to do and fend for themselves. To compete, if you will, with everyone else, as much as they possibly can.
However, in certain instances, people with such disorders should be allowed "special dispensation."
I don't know much about this particular handicap, but especially since it sounds as if the person probably won't be able to become a full-fledged music professional, the powers that be at the school should help (tactfully, of course) facilitate this person the way to self-accomplishment as a musician.
I don't think any staff or other students can possibly have any objections to someone like that being cut some slack, not in lowering any technical academic requirements, but in granting such a student the required time in which to accomplish their goal with dignity and the least possible undue pain or discomfort.
Something like this can go a long way towards filling a person with self-respect in spite of any other deficiencies they may have.
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Author: Katherine Handcock
Date: 2001-10-05 17:11
Hello again,
Unfortunately, my working with her is as much dispensation as the school seems willing to offer. It's certainly a step up from forcing her to do weekly, hour-long lessons, which are just too long for her, but breaking the time into shorter sections is all we're left with. She's doing choirs as ensembles, to fill in her large ensemble credit, so that takes some of the stress away, but that's all the slack they'll cut her. I don't agree with faculty policy in this respect--I would like to see far more compassion--but since we're stuck with it, I'm hoping that we can make the best of it all.
As well, she's not directing herself towards anything performance-related; she's looking into theory and composition. Nevertheless, a minimum of two years of lessons and juries are required to stay in the Bachelor of Music program. I've bumped heads with this policy before--my husband ended up having tendonitis problems that bumped him into the Bachelor of Arts hons. music program (that's why he had to overload credits.)
I understand that stress is a major factor, so I've been trying to keep lessons enjoyable and stress-free, although she's understandably frustrated with the situation and her playing. I've also been trying to help her with some of the other courses she's having problems with--dictation being the major one--so that she doesn't have to worry about that as much. She's certainly making progress--her hand position is great, and her sound production's already getting much better, even after nine months away from the instrument. Still, anything I can do to ease things for her would be great.
Sorry for my little rant here, but I think this is one of the biggest problems with our music faculty here--they give you much sympathy, but no real assistance. There's any number of reasons why--some of which are personal on the part of the individuals in charge of policy, which really makes me mad--but we are kind of stuck. Anyway, thanks for the suggestions so far.
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Author: Peter
Date: 2001-10-05 17:56
With all due respect, your student needs to find herself a handicapped-friendlier school, because, in the long run, I can't imagine what difference it should make to anyone if an afflicted person like your student completes the course in two or four years.
One hundred years from now, when we are all gone and forgotten, and even our direct decendants won't know or even care who we were, none of this will make any difference whatsoever to the world-at-large.
Except that today, someone who has no choioce, but to exist under some very unfortunate conditions, is suffering, not only the human indignity of the disease, but the inflexibility of those who could display some compassion and help alleviate it for her.
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Author: dennis
Date: 2001-10-05 20:07
I responded directly to those who had written me on my email. I will mention here that the Univ of AZ Music School DOES work with impaired students....in various ways and further, each seems to be treated with the individual attention that their impairment may need.
As Peter mentioned, higher education institutions are invaribly funded by the gov't. As such, perhaps, Katherine, you may choose to (as part of your Master's program), have some viable contact with the Board of Regents, etc. Needless to say, with all that has gone on relative to discrimination within the handicapped ranks, a Federally funded institution does not need the exposure they are compelling one to take.
Proof of the puddin.....2 wks ago the Tucson Pops Orch gave it's last outdoor concert for the season. My friend and mentor, John Denman, who is combating throat cancer, gave the premiere performance of the Concerto he had written and recently completed. 11,000 people attended and gave a standing ovation. Point is.....John needed to be assisted on/off the stage, performed sitting down, and at one point, the orch had to pause for his benefit. He could not speak and what he wanted to share, was read by the conductor.
Another option is for you to contact your state Social Security Disability Ins. administration. From experience, trust me...the squeeky keydoes get the oil.
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Author: Peter
Date: 2001-10-05 21:13
For the ones who missed it, this is what I said off line, in reply to Dennis:
I couldn' agree more.
I know I don't sound like it, but I'm not only a hardcore conservative, but also an extremely hard-core "hawk," and always have been. I couldn't give a lesser _______ for those who get into things of their own volition, sometimes repeatedly.
But children and handicapped people, neither of which can completely always help themselves without some human kindness in their corner, are a different story. I don't like bullies, and institutions such as the one whose portrayal kicked off this discussion are nothing but closet bullies.
I could even understand if they outright refused to accept handicapped students, but if they did, they would probably lose any federal funding they got, if any. Most schools do make use of federal funds and/or government contracts. They happen to be great money makers. So what they do is take on handicapped students and make use of their attendance for all they are worth, but when they have to put in some effort on their part to accomodate those students, it becomes too much for the snoots to bear.
I do believe the federal government has programs to assist learning institutions handle the problems involving taking on handicapped students. Some schools try to show a profit from it as well.
So what do they do? They make the person's life impossible and either expell them or force them to quit the program on their own. That way they can say, "Oh, gee, I guess our curriculum was too strenous and he/she couldn't handle it!"
The self-righteous powers in that school should be reported to the powers that be of a higher authority, whatever that may mean in this instance!
Peter
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Author: John Gould
Date: 2001-10-05 21:18
Just an idea....
Another possible approach to deal with the pain and fatigue might be to switch to a wind synth, such as the Akai EWI or the Yamaha synths. With the EWI, hardly any breath support or embouchure is required, and it's not as physically hard to play (you touch electrical contacts shaped a little like lifesavers that complete the circuit) Just a thought, but I had a good friend (a trumpeter) who messed up his lip and played an EVI (electronic valve instrument) for a few years, and then switched back to trumpet when he got better. This was a phenomenal jazz trumpeter who held a professorship at a university, and after that period of playing EVI, he remarked that he grew as a musician in ways not ordinarily encountered, and at the same time allowed the healing to occur. Of course a wind synth won't express the same nuances of a clarinet, but it's better than nothing, and might even be therapeutic.
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Author: Sandee
Date: 2001-10-06 02:18
I, too, have to compliment you for concern and effort.
I returned to clarinet after a 25 year layoff. I have multiple sclerosis and found that changed a lot. I have to practice in short sessions, reduce my expectations, and make sure I have the right equipment. While I am not faced with the same
dilemma as your student, I did recently complete a masters [non-music]. I had to "elongate" the program some what to complete it. This may be an option for her. I found it helpful, when ever I needed some sort of consideration, to explain exactly what symptoms were interefering with my doing a task the way everyone else does it, and what would be a good solution to accomodate me. This helped at school and work. Like MS, fibromyalgia is little understood; the diagnosis does very little to explain how it has effected it's "lucky" owner!
Although the ADA is the law, my experiences have been that some of the "powers that be" expend more energy to pretend to follow the law than they would if they actually cared. On the other hand, in my job, both of my main bosses have tried to act in the spirit of the law, always finding work for me that I can do [darn!]. The administration above them resents even providing HC parking.
I hope you both may find some of this helpful. Good luck!
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Author: connie
Date: 2001-10-06 17:21
At the risk of repeating some of what others have said, I will add my thoughts.
I echo the previous compliments on your willingness to go the extra miles for this student. People with fibromyalgia ("fibromites") constantly face disbelief and skepticism, since no one can see the pain and fatigue. There is a lot of support out there on the Internet. One site in particular that I like is www.paintracking.com.
With fibromyalgia, stress causes more sleep problems, which causes more pain, which causes less sleep, which causes more fatigue and more stress.
For myself, I find playing the clarinet a stress-release which has actually helped my fibromyalgia symptoms. When my father-in-law recently passed away, I played every slow minor-mode piece I could find. No one else was home, and I could put everything I felt into it, and it really helped. On the other hand, it is very difficult for me to practice pieces which I don't enjoy hearing. So I would suggest that, as much as possible, this student be allowed to play things that she enjoys. It's hard enough to pick up the horn and play when you're constantly fatigued without having to play "crap". When working on scales, I have to vary my approach (rhythm, style, etc) to keep my brain focused in order not to tense up.
The other thing to remember is that fibromites are prone to muscle stiffness and fatigue from repetitive movements. With technical exercises that are repeated, she may find her muscles "freezing up". I sometimes have to break my practicing into 5 or 10 minute segments, go do something else, and come back in order to break the cycle of increasing tension and decreasing effectiveness.
It's a shame the school won't be more responsive and allow her to extend the length of her studies. Most schools give you 5 or 6 years in order to complete a diploma. Unfortunately, it requires a tremendous amount of energy to buck the system in order to effect a change, and it doesn't sound like your student has that. Maybe she has a family member who could be an advocate.
I hope this helps. You can email me, or give her my email address, if you think I can be of any more help.
connie
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Author: Bart Hendrix
Date: 2001-10-09 03:34
You don't say where you are located. However, I can offer a couple of comments as well.
--My wife is a victim of Fibro/CFIDS and appreciated the comparison to "chewed string". She thought that was fairly accurate.
--My wife has also done quite a bit of research on the disease. She advises that, at least in America, action can be brought under the Americans With Disabilities Act asking that the school make allowance/accomodations for your student. Since there are still many health professionals who believe "it's all in your head", however, the likelyhood of success with such an action depends largely on the individual judge. On the other hand, would a school risk the potential legal exposure in order to deny accomodations to one student? Perhaps an inquiry along those lines might be productive.
Good luck.
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Author: Brenda Siewert
Date: 2001-10-10 15:14
I've had fibromyalgia for over 20 years and it is something you have to learn to live with and deal with as best you can. I found diet, rest, proper exercise and vitamin C helpful to rebuild my immune system. But, when the pain flares up and the fibromyalgia becomes really active, it is sometimes difficult to make my hands work properly. However, I am able to play 1st clarinet and do some solo work--although it takes a great deal of concentration and determination and God's help above all. I have my clarinets set up by the Brannens and they all have wonderful key action--smooth and easy. I also recommend a neck strap for your student to help take the weight of the instrument off the right hand when the disease is active.
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