New to this forum


#1

Dear all,

I have just joined this forum today and wanted to introduce myself but am not sure how much to say.

It is four years since I was diagnosed with Parkinson's and it may seem odd that I haven't signed up sooner. It wasn't an absolute shock when I was told the news as my father had the condition for about 20 years and I sort of recognised some signs.

The medication I am taking seems to be working as the symptoms are often controlled although there are struggles and frustrations when some every day tasks are difficult. I do seem to be taking a lot of tablets.

Fortunately I am still able to work without too much discomfort or awkwardness.

I am also trying to continue as much as possible with my amateur music activities fitting in as much as possible while I am still reasonably able. Having played the clarinet for many years it was the deteriorating dexterity when playing that alerted me to the Parkinson's. I still play, but with less accuracy and certainly no fast passages. I can not imagine life without something musical to participate in. I have conducted an amateur wind band for some time and am trying to continue a little bit. It is tiring and turning pages of the score can be hit or miss, but the mild physical movements that are as close to exercising that I'll get are definitely beneficial until I start to flag.

I have recently had a go first at arranging music, and then was encouraged to have a go at composition. I have actually written a piece for orchestra which is intended to portray the battle to overcome some of the problems due to Parkinson's.

Oh dear, I am rambling.

So you may deduce that I am desperately doing many of the things I had thought I would do in my retirement whilst I am still able, about 10 years earlier than I planned.

Obviously I am worried and I suppose frightened about what may be in store for me (and my dear family) in the future. I try to avoid thinking about it, keep as busy as I can, bury my head in the sand when I am less busy and carry on taking the tablets hoping and praying that any decline is a long way off.

How does everyone else cope?


#2

Hi Musical chemist

welcome to the forum , both myself and my mother were diagnosed this year with parkinsons , i did find it very difficult to cope with at first by worrying how i would be in years to come and worrying about the future i was on a emotional rollercoaster ok one minute and bursting into tears the next ,but i over come that and now try to be a positive has i can and not to think to much about the future as my son quite wisely said to me do not worry about the future we will cross that bridge when we get to it ,i accept that i will have good days and bad days and if it is a bad day i tell myself tommorow is another day


#3

Dear Musical Chemist

Welcome to the forum!  

I was interested to read your story because it's similar to mine.  Like you, I was diagnosed four years ago (well, almost). This came as no shock as I had known two years earlier but had avoided the 'official' verdict until the condition caught up with me.  Also like you, I find that my symptoms are currently under control, thanks to the medication (Mirapexin and Madopar).  I also know that my Parkinson's is genetic in origin.

I'm certain your love of music and the fact that you can not only play an instrument but can also conduct and compose must act as a form of therapy which might even be helping to slow the disease's progression.  My connection with music is more modest than yours as I am secretary and orchestra secretary for our local city opera company, but I love being a member of the chorus and always come back from each weekly rehearsal on a high.

I worry about the future occasionally but manage to cope by using  similar methods yours.


#4

I've had to give up my life as a semi pro musician for much the same sorts of reasons. Try an instrument where the requirement for small delicatee movement(fingering clarinet) are minimised. I, personally, have moved onto double bass, because I find the big actions easier to handle.

Good luck

 

 

 

 


#5

Musical chemist, eh? that covers most of the bases we need around here . . .

My own very poor forays into playing instruments always collapsed around coordination (maybe that's an early biomarker for PD?). And I can absolutely see the difficulty of instrumental playing, maybe even of conducting (is your pic flipped, or do you usually hold your baton in your left hand?)

I'd certainly say go for it (whatever it is). Continue conducting (great workout). Play jazz - with improvisation you're in charge: Barbara Thompson simply played slow passages when she couldn't play anything fast. Play a one-handed recorder. Play your clarinet in whatever way you can play your clarinet: a colleague of mine reminds us that there are no wrong notes in music, only norms - so you're free to make up your own norms. Remember it's the act of collective creation that matters, not any subsequent product.

Oh, and sing.

Semele


#6

Welcome, Musical Chemist!

I have had PD over 16 years now.  Having studied classical piano ten years in my youth, I have continued throughout my adult life to play (strictly as an amateur).  Like you, it was in noticing a lack of perfect coordination that alerted me very early to the possibility of PD.  Before I started on medication I was losing the ability to play the piano very much at all. 

Drugs, exercise, and a positive attitude are the best methods I know for dealing with this disease.  As for music, I bought a Schimmel in the new "Konzert" series, which has a true concert touch, very light action.  I practice daily, and now I'm able to play things I thought were out of reach forever.  (For example, Chopin's "Berceuse" and "Fantaisie Impromptu in C# minor", Mozart's piano sonatas, Beethoven's "Sonate Pathetique")  After all these years, most people I meet never guess I have a handicap.  And someone told me that performing or conducting music is the only activity that engages all parts of the brain simultaneously.  If that is true, you are already getting some of the best therapy possible!

Best of luck with your own case of PD!
 


#7

Maybe we can all get together and produce a PD Band!!!

A repertoire of slow, improvised tunes with loads of vibrato will be best

Here's a list of songs we could consider

big grin


Shake
Shake On
Shake It
Shakedown
Shake for Me
Shake Me
Shake It Up
Shake Up
Shake With Me
I Shake
Shake #1
Shake #2
Shake #3
Shake'm
Shakey's
Shake 'Em on Down
Shake a Hand
Shake Dat
Do the Shake
L.A. Shake
L.K. Shake
Na Shake
No Shake
Shake 'Em
Shake 'er
Shake 26
Shake Her
Shake It On
Shake Ma
Shake With It
Shake Ya
Shake-In
Shakedub
Shakeero
Shaker
Shakes
Hipshake
Man Shake
Soul Shake
*** Shake
Bay Shake
Big Shake
Bud Shake
FMB Shake
Her Shake
LT's Shake
Now Shake
One Shake
Pop and Shake
Shake and Pop
Shake and Run
Shake Dog
Shake It (3rd Eye)
Shake It 4 a Playa
Shake It 4 Me - Mike Pro
Shake It 4 Me Ft Mo' B, NW Alliance, & Duane Scott
Shake It 4 Me
Shake No. 5/B
Shake Off
Shake Out
Shake Som
Shake Sum
Shake the Cut
Shake the Lie
Shake the Sky
Shake the WMC
Shake Ur'z
Shake You
Shake-Bop
Shakeaway
Shakewine
Shake and Bake
Shake and Roll
Shake the Spot
Shaken

I'm such a nerd!


#8

That is quite a list. I won't try them all at once.

 


#9

have you tried museScore or similar ?

 

the big trouble with woodwind and brass is when your ombature goes.


#10

You missed "Shakin' All Over" by Johnny Kidd and the Pirates.

When you move in right up close to me
That's when I get the shakes all over me

Quivers down the backbone
I got the shakes down the knee bones
Yeah, the tremors in my thigh bone
Shakin' all over

Just the way that you say goodnight to me
Brings that feelin' on inside of me

Quivers down the backbone
I got the shivers down the thigh bone
[ From: http://www.elyrics.net ]
Yeah the tremors in my back bone
Shakin' all over

Quivers down my backbone
Yeah the shakes in my knee bone
I got the tremors in my thigh bone
Shakin' all over

Well, you make me shake it and I like it, baby
You make me shake it and I like it, baby
Well, shake, shake, shake
Shake, shake
Shake, shake, shake
Shake, shake, shake


#11

... and you missed this, by Jerry Lee Lewis (to be played at all PD gatherings?)

Come over baby
whole lot of shakin' goin' on
Yes, I said come over baby
baby you can't go wrong
We ain't fakin'
Whole lot of shakin' goin' on

Well I said come over baby
we got chicken in the barn
oooh... huh..
Come over baby
babe we got the bull by the horn-a
We ain't fakin'
Whole lot of shakin' goin' on

Chorus

Well I said shake baby shake
I said shake baby shake
I said shake it baby shake it
I said shake baby shake
Come on over
Whole lot of shakin goin' on

Ahhhhh Let's Go !

 


#12

Hi Musical chemist.....sounds to me like you are coping well and keeping your sense of humour is important. I was diagnosed in feb 2013 though i had a pretty good idea what it was and it appears that it had been approx 5 years lurking!!! the symptoms were all there and i must say family and friends were more shocked and upset than me. I don't play a musical instrument but i have enjoyed dancing for years, Ballroom, Latin. Sequence and Line and although doing the cha cha gives me the "Hippy hippy shakes"!! i  have a go at moves that are not quite as fast. My meds have just been changed and i am finding a few side effects that are not pleasant or is it the PD? anyway keep smiling, exercising as and when you can and live for today and enjoy. I wish i had joined this forum before i did because the support from other Parkys is fantastic, thanks all.