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 keeping involved
Author: Marie 
Date:   2000-07-20 22:19

For the past eight years music has been the most significant part of my life. I was accepted to a music school out in New York and was going there next year as a freshman to major in clarinet performance. However, I just found out about a month ago that I have a medical condition that will prevent me from ever playing the clarinet professionally, I was diagnosed with multiple sclerosis. It is very hard to accept, but there isn't anything I can do about it. Anyways what I wanted to ask is does anyone have any suggestions as to how I can keep involved without actually playing, aside from just listening to music and attending concerts I would like to be able to keep involved. Any responses would be greatly appreciated.

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 RE: keeping involved
Author: Ginny 
Date:   2000-07-20 23:02

I am so very sorry to hear that. I have a very good friend with MS, and it has been in remission about five years now. It was a real blow when she found out what was going on. She has been a part of a study for some promising medications. I won't pretend to know what she's done, but she's doing very well right now, and she plays rather well. Make sure you look into the very newest treatments. Miracles are all around us and MS research is really moving forward quickly. If you can keep the MS in remission (it will go into remission) you could continue with your plan for life.

Best wishes,

Ginny



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 RE: keeping involved
Author: SusieQ 
Date:   2000-07-21 02:22

I am sorry to hear about your diagnosis. Keep playing as long as you can. I sell medical equipment and alot of my customers have MS, most of which are able to live very productive lives, and work full time. MS can vary a lot in it's progression. Some people live long lives with a mild case and function quite normally. Look into enrolling in your local chapter of the National MS Society, they can keep you up to date on research and medications, they may also have funding available for you if need medical supplies or equipment. Have you thought about going to school to teach? You would always be able to teach others how to play the clarinet. Giving lessons would be a great way to keep involved with your music. Good Luck and never lose Hope for a cure.

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 RE: keeping involved
Author: Bob Gardner 
Date:   2000-07-21 02:29

I was going to make the same suggestion as Susie and that is teaching. It sounds like you are just finishing high school so that may be a place to stay involved. Go for a teaching degree.
MS can be controled. i will add you to our pray list.
peace.

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 RE: keeping involved
Author: SusieQ 
Date:   2000-07-21 02:52

Marie, I assume you live in the US? The web site for the National MS Society is NMSS.ORG, this is a great organizaion. You can locate the address and phone number for your local chapter from the web site. I have delt with the local chapter where I live getting funding for my customers and they have been more than accomodating. The more knowlege you have the better you can manage your health. I wish the best for you.
SusieQ

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 RE: keeping involved
Author: J. Butler 
Date:   2000-07-21 03:05

Marie,

I have a repair tech friend that has had MS for serveral years now. He is still repairing instruments quite successfully. I know the disease progresses differently for each individual, but to look at Bill you couldn't really tell that he has MS (into his 60's by now). If you are interested in the repair tech field you could apprentice with a tech or you could go to one of the schools such a Red Wing. We all wish you the best.

J. Butler

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 RE: keeping involved
Author: Willie 
Date:   2000-07-21 03:10

Don't throw in the towel just yet. If you can get the proper treatment and keep a positive attitude you may still be able to play. Many musicians and atheletes have proven their Doctor's prognosis wrong by strong determination and positive attitudes.

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 RE: keeping involved
Author: Marie 
Date:   2000-07-21 05:33

It is so nice to hear from all of you. I guess I should have gone into further detail in my first statement. The reason I was diagnosed in the first place is that I lost all feeling in my left hand. THat is what initiated the tests. And yes, you are right, at this point I can still do a little playing, long tones mostly, nothing too technical, but regardless I do appreciate all of the responses.

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 RE: keeping involved
Author: diane karius 
Date:   2000-07-21 05:55

There's been lots of good advice given here - I'll just add one thing: You may find (and this depends on how M.S. has affected you- sorry if this isn't appropriate) that you can continue to play clarinet by relying on some aids (I'm thinking of things such as a neck strap or the "weightlifter" for bearing the weight of the clarinet). Occupational or physical therapists are generally very good at coming up with adaptations to allow you to continue doing what you love. One of my friends also has M.S. and she plays flute in (at least) two different community groups. She's had the disease long enough that she has permanent muscle weakness in her legs and some in her arms, but she's been able to continue playing.

Another option might be composing music (we all know there isn't enough really good clarinet literature out there!).

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 RE: keeping involved
Author: William 
Date:   2000-07-21 14:27

I have nothing to add to the above great advice and messages of support that you have received from others except to add my own encouragement for you to keep going and not give up. One idea did come to mind--have you considered alto or bass clarinet? The tone holes are covered and are less "touch" critical. Also, the band parts tend to be less technical and are lots of fun to play. And, at the risk of being chastised by all the clarinetists in the world, if your left-hand condition does not improve, would you consider switiching to the trumpet? Again, my best wishes for you and I hope ( with all the rest of us) that your condition does get better. Keep in touch and, good luck to you.

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 RE: keeping involved
Author: Elke Schmidt 
Date:   2000-07-21 14:38

Marie,
I am not entirely familiar with the details of MS however perhaps you could stay with music by learning to sing? You might be quite depressed right now because what you had planned for yourself, you dreams, are now shattered. But I have discovered that it is essential to one's sense of well being to move forward. You already know breath control, relative pitch and music theory so learning to sing would only involve a technical mastery of the art.
Good luck

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 RE: keeping involved
Author: Tim2 
Date:   2000-07-21 16:09

I have cerebral palsy. It affects my legs. I chose to be a music major in 1973. I got my degree, two years later finally got a job in a small hick town as band director for the whole school system. I then quit after another two years. I couldn't take the establishment of the school system. I'm now in a totally different career. Quite happy. I play not for a living but for fun. I am involved in music in other ways, with other people.

What I am trying to say is that you may plan out a path for yourself to take, but if the path changes, it can be a wonderful thing.

When I was a kid, I used to feel bad that my cp was going to be a part of my life forever. But in many ways, other doors have been opened. Not just in the job market, but in the "people you know" market. After all, it is what we can share with others that counts. And I've gone through most of those doors.

Everyone here has shared advice to encourage you in many ways. Learn as much as you can about MS. You don't know the things you will find. No matter what happens, you can always still "play the clarinet". We all love playing. There is no reason to give that up yet, if ever. It's part of you. If you can't play Midsummer Nights Dream Scerzo or all 30 Cavallini Caprices, so be it. That's the way it is. But play what you can. Don't give it up and don't give up on your skill. Keep working at improving your skill. You may surprise your self. Be determined and of resolve. Listen to the others earlier in this post. I wish you well in the future. Keep your mind and your heart open. Grow.

To life! (it's a great thing)

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 RE: keeping involved
Author: Don Berger 
Date:   2000-07-21 17:07

Marie: Yes, keep involved. I have hastily read all of the good advice-best wishes above and echo them. For me, musical involvement solved some of my earlier problems. I might add symphony-librarian to the teaching et al suggestions. Yes, I should imagine that alto clar. [with a floor peg like for bass cl] would be a possibility for you. As with Nike, "Just do it". Don

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 RE: keeping involved
Author: Julie 
Date:   2000-07-21 17:58

Hi Marie,
I also am going to college as a clarinet performance major this fall and I cannot imagine how horrible you must feel right now. My one suggestion for you to continue in music may sound pretty wierd. Maybe you could consider switching to trombone. I played the trombone in marching band last year and found that, strangely enough, it was a pretty easy switch. Plus, it won't screw up your chops like some smaller brass mouthpieces would. If you get the feeling back in your hand, you will be all set to play clarinet again. Good luck and I hope things look up for you soon. :-)

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 RE: keeping involved
Author: mandy 
Date:   2000-07-24 02:21

all the above suggestions are great. i know about MS because my grandfather has it. what about helping with Band Booster organizations? without the band boosters at my HS, we would've never done many of the things we did. we wouldn't have gone on trips, or to football games, and the quality concerts we put on would not have happened without their support and help. i wish you all the best.

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 RE: keeping involved
Author: Kontragirl 
Date:   2000-07-26 02:06

Ditto all of the above here too...I also hear tuba is a fun switch. I hope things start going your way! Good luck!

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 RE: keeping involved
Author: Sara 
Date:   2000-07-27 03:26

i know exactly how you feel 4 years ago i barely know the clarinet existed, well i didi vaguely but that year i started it on the count of oneof my friends played it and i would get to play stuff with her, once I got better and since she was a year older I practiced a whole lot to catch up with her. Eventually though she started not caring and i began to reach my peak of learning. So after almost 4 years she is now trting to reach her learning peak and I a full year behind her and a year younger am her clarinet teacher! I can never thank her enough for introducing me to something that is a huge part of my life! I don't know how i would survive if i were in your situation, but i'm sure hat there is a way, i agree by the way about the teaching thing, even if I didn't get paid i would still teach, its so much fun to know that you are a helping someone beter themself as a person and a player! Take care!
Sara

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 RE: keeping involved
Author: Lelia 
Date:   2000-07-27 18:06

Another very satisfying way to stay involved in music is to learn to compose it. If you're still hearing music in your head, but your body won't cooperate, use other people's bodies! I don't want to trivialize what you're going through right now, but there is one positive side to MS, as opposed to some other diseases of that type: MS can progress very slowly, with long remissions. Despite how discouraging things seem in the immediate reaction to such a diagnosis, you may enjoy many years of good health and active music making. For this reason, I hope you'll stay optimistic and keep your options open. Don't abandon hopes, dreams and things you love to do now just because they *might* become impossible later.

I keep thinking about a good friend whose cancer started spreading about twenty years ago. Doctors agreed she might live another year or so (enough time to "put affairs in order") with aggressive treatment. She quit her job during chemo (which went unexpectedly well, but of course she wanted to be realistic, and not delude herself with false hopes...) and spent about the next six years emotionally curled up in a ball, waiting for the cancer to come roaring back and kill her. Instead, it just sort of disappeared. Nobody knows why. All these years later, she still regrets wasting those six years! Doctors are really good at what they do, but what they do does not involve crystal gazing, so it pays to stay mentally prepared to take advantage of *good* surprises if and when they happen. The body can do strange things sometimes. Best wishes and hang in there!


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