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-   -   New diagnosis (https://www.neurotalk.org/myasthenia-gravis/174956-diagnosis.html)

StephC 08-17-2012 07:30 PM

New diagnosis
 
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?

BackwardPawn 08-18-2012 02:19 PM

Quote:

Originally Posted by StephC (Post 906664)
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?

Just a caution about leaning the piano. I was looking for the same thing you were a few months ago and bought a set of "Learn to Play the Piano" DVDs. My parents were furious as they said you can't learn properly without a teacher. Anyway, I consider it a worthwhile investment because I got through about three lessons before I realized I couldn't sit upright on a hard bench without a back long enough to actually learn and enjoy playing.

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.

southblues 08-18-2012 07:39 PM

I play guitar. If I don't feel like sitting up, I slouch.

Anacrusis 08-19-2012 03:19 AM

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. :) :nopity: :Music 2: :laptop: :Painter:

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

Geode 08-19-2012 12:42 PM

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

Anacrusis 08-19-2012 01:11 PM

Quote:

Originally Posted by Geode (Post 907093)
I didn't have the breathing stamina to play the flute for more than 5 seconds.
Tatia

That´s exactly right, Tatia!! And especially flute for beginners! When I first tried it, I was so focused on just trying to hold the instrument up, that there wasn´t time to see if I would get breathless actually playing it!! I hope Steph gets to do what she really wants to do - I´m sure there must be plenty of MG piano players out there!

(I really must pm one day to exchange some ´notes´;) - learning as an adult is one of the most interesting and awesome things to do :yahoo:)

Anacrusis

southblues 08-19-2012 04:53 PM

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!!

StephC 08-19-2012 09:14 PM

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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