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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS. |
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#1 | ||
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Tonight I realized as newly diagnosed MG patient, I need to take up some new, less energy/strength requiring hobbies that don't involve going to the movies or trying to learn all I can abut MG. not that I am not forever grateful for the web, ability to educate myself but I need to limit my time thinking about it.
First thing I think I will look into piano lessons (always thought that would be cool, as kid my family couldn't afford anything private) but would love to hear from others on the group (whho i think seems to be highly intellegent, good and kind hearted people) Soooo any suggestions for other fun new hobbies? |
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#2 | ||
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Quote:
I have the SPS thrown in, making everything worse on me, so you may be different, but I wanted to let you know my experience before you spent a lot of money on it. |
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"Thanks for this!" says: | StephC (08-18-2012) |
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#3 | |||
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I play guitar. If I don't feel like sitting up, I slouch.
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Celeste |
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"Thanks for this!" says: | StephC (08-19-2012) |
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#4 | ||
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Hi Steph,
Here are my experiences with instruments: Piano - I had to give up for 2 years because trunk muscles were too fatigable to maintain the posture - but especially the constant slight pulling on the deltoids away from the body and finger dexterity required. Guitar - I managed to get away with - although you are not supposed to ´hang ´over your instrument. The guitar uses less muscle suspension ´away from the body´. Since I had lost finger dexterity for plucking I was still able to strum chords which are nice and relatively easy to learn for many. Sometimes though my wrist would fatigue bang in the middle of a song which is all well and good if you are not accompanying a group of singers!!!!! I certainly wasn´t able to restring or tune a guitar for two years. Flute - I started the flute and realized I would have to build a frame for the flute to sit on so I would only have to lift the weight of my own hands and avoid holding up the weight of the instrument! I could play for 5 seconds and then it would drop! Lately I´ve gotten cross when my foot is not able to tap the beat to a whole song! (Have no idea how that muscle slipped in there!) Here are my suggestions: You know best which muscle involvement you have and where to be careful. Some people can join a choir but others who can not finish speaking a sentence can not! If you do get an instrumental teacher (piano is what you said you wanted) ask for about 3 trial lessons to see how it works for you. There may be a teacher who would give you lessons once a month and so giving you enough time in between to not feel too much pressure if your health is acting up but enough time to feel like you are getting somewhere. There is a great APP you can download with a keyboard on it. Although it´s not entirely the same, you can still´continue´working on note reading, composing etc on an ipad when your brain is alert but your muscles are having weaker spells. If the following name of the app is edited out of here then I can pm it to you…… Garageband for ipad. Don´t download any old keyboard apps as some have cleverly put adverts just under the keys where your fingers inevitably touch those and open them up just when you got your favorite Chopin piece down!!!! I´m impressed with anyone who can move in a new direction as fast as you seem to be doing. Wishing you good luck with picking the hobby that is best for YOU. ![]() ![]() ![]() ![]() ![]() My hobbies right now are reading neurobiology books, drinking way too many cappuccinos with friends and most importantly for me...taking it easy. Have fun Anacrusis |
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"Thanks for this!" says: | StephC (08-19-2012) |
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#5 | ||
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Junior Member
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Great reply by Anacrusis! There's an additional problem with playing the flute. Even when I didn't have weakness, in my college instrument classes, I didn't have the breathing stamina to play the flute for more than 5 seconds. (I have a Bachelor's and a Master's in Music Education)
So I just wanted to add, if you're interested in a wind instrument, you might try the recorder to begin with. Some people think it's not a real instrument, just a kid's toy; that's not true. It's a Renaissance instrument. You can get one very cheap, it's very easy to learn even without a teacher, you can play it with your arms beside your body - not extended at all, and it requires very little air. The hardest thing to teach the school kids is to stop blowing so much air. Tatia http://www.youtube.com/watch?v=WXkRg...eature=related |
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"Thanks for this!" says: | StephC (08-19-2012) |
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#6 | ||
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Quote:
(I really must pm one day to exchange some ´notes´ ![]() ![]() Anacrusis |
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"Thanks for this!" says: | StephC (08-19-2012) |
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#7 | |||
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Recorder is actually a very serious instrument. My sister plays in a recorder group and they do big classical music concerts wearing formal gowns and the men wear tuxedos and it is really a grand event.
Tatia, I love that youtube you attached. What grand instruments!!
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Celeste |
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"Thanks for this!" says: | StephC (08-19-2012) |
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#8 | ||
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I appreciate the great insight, things I had not thought of in terms of physical issues. I think the ipad app is probably most practical. I will try the iPad app garageband and see how that goes. I often thought painting might be good hobby so maybe will try iPad app for that too.
Today i bought myself 60" tv and even with my blurry, double vision it was pretty pretty good. :-). Thanks again to all for all the many things i have learned from this group Have a great week! |
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