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Musicians with PD


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#1 davebass

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Posted 26 January 2011 - 07:15 AM

Hi there
I am a 61 year old male. Diagnosed with PD in May 2008. My medication is 0.7Mg Mirapex 3 times daily. I make my living as a bass player and obviously my ability to play my instrument is deteriorating as the PD progresses, I estimate I am currently at about fifty percent of my pre diagnosis ability.
My question is this: I have heard of several musicians who take some medication an hour or two prior to a performance and that the medication enables them to play their instrument "normally" for the duration of the performance. I have tried to find out what this medication is but so far have had no success, the people I have asked include my GP, and the local Parkinson's specialist nurse but so far nobody has been able to come up with any information. I just wondered if anyone on this forum might be able to help with some information as to whether such a medication really does exist and if so what the name of it is.
Thankyou for reading my post.

Davebass

#2 Dr. Okun

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Posted 26 January 2011 - 08:55 AM

Usually they simply take an extra tablet of sinemet one half hour before a performance. High level athletes do this as well.

Also consider for tremor many people take 20mg of propranolol before performances and this also helps anxiety (watch for heart rate, depression, and worsening asthma with this approach).

The most common in PD is the sinemet approach.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#3 gazelle66

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Posted 26 January 2011 - 10:46 AM

Hello Dr Okun and Davebass,

I have no idea about the medicine, but did want to pass on the fact that my neurologist has a concert pianist amonst his patients who apparently is still able to play amazingly after many years with pd. So don't give up...there must be an answer somewhere...

kind regards
Sue

#4 Dr. Okun

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Posted 26 January 2011 - 11:13 AM

Thanks Sue.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#5 davebass

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Posted 26 January 2011 - 06:10 PM

Thanks Sue.





Grateful thanks to both Dr Okun and Sue for taking the time a trouble to reply to my post so quickly. Interestingly I did wonder if the medication I had heard about was Levodopa based, but when I suggested it to the Parkinson's nurse she said she would definately not put me on "that" but recommended a "change of lifestyle" instead, when I asked her what she meant she said she meant that I should give up playing the bass. Helpful or what !

#6 davebass

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Posted 27 January 2011 - 02:00 PM

Hello Dr Okun and Davebass,

I have no idea about the medicine, but did want to pass on the fact that my neurologist has a concert pianist amonst his patients who apparently is still able to play amazingly after many years with pd. So don't give up...there must be an answer somewhere...

kind regards
Sue


Thankyou very much for your prompt and informative reply Dr Okun, I will pursue this with my GP / Parkinson's Nurse.
You have given me a glimmer of hope ! I will let you know what they say after my appointment with them on 17 Feb.
And thankyou to Sue for your kind words, they have given me some hope.

Best regards
Davebass

#7 Dr. Okun

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Posted 27 January 2011 - 11:05 PM

Don't give up, and don't be afraid of levodopa. My wife is a violinist and this is an important part of your life that should be preserved.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#8 davebass

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Posted 23 February 2011 - 11:12 AM

Don't give up, and don't be afraid of levodopa. My wife is a violinist and this is an important part of your life that should be preserved.


Hi Dr Okun, an update re my original post. I saw the Parkinsons specialist nurse last week and she agreed to prescribing me co-beneldopa (Madopar) 12.5/50mg, one capsule to be taken an hour before the start of a gig.
I tried it for the first time last night and am happy to report that it definately improved my ability to play the bass, not back to how I was before I was diagnosed but a big improvement. I found myself playing bass lines that I
had previously given up even attempting !!
Again thankyou so much for your advice. ( The band send their thanks too!)

Dave

#9 Dr. Okun

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Posted 23 February 2011 - 02:55 PM

Dave, that is just great news!
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#10 early-onset

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Posted 27 February 2011 - 09:46 PM

My question is this: I have heard of several musicians who take some medication an hour or two prior to a performance and that the medication enables them to play their instrument "normally" for the duration of the performance.


I performed guitar for years before being diagnosed with early onset Parkinson's and tried beta blockers thinking it was simply stage fright (don't recall what kind). They helped very little and, according to my bandmates, "dulled" my performance.

I haven't yet taken any PD medication, but reading this post interests me. I have almost entirely quit playing guitar because of the difficulty caused by Parkinson's. I've been afraid of beginning any medication, fearing I would only build up a resistance and the medication wouldn't work later in life when the symptoms are more serious and I "really need it."

Only now while writing this do I realize I haven't yet fully come to grips with my disease.

#11 Dr. Okun

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Posted 28 February 2011 - 05:26 PM

It becomes clear over time that delaying meds for some theoretical gain in the future is probably not the best strategy and there may not be a reward waiting.

We recommend treating any symptom that impacts quality of life.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips

#12 davebass

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Posted 28 February 2011 - 07:16 PM

I performed guitar for years before being diagnosed with early onset Parkinson's and tried beta blockers thinking it was simply stage fright (don't recall what kind). They helped very little and, according to my bandmates, "dulled" my performance.

I haven't yet taken any PD medication, but reading this post interests me. I have almost entirely quit playing guitar because of the difficulty caused by Parkinson's. I've been afraid of beginning any medication, fearing I would only build up a resistance and the medication wouldn't work later in life when the symptoms are more serious and I "really need it."

Only now while writing this do I realize I haven't yet fully come to grips with my disease.


Hi "Early onset", it is a such shame to give up playing an instrument that has taken years and years of practise to learn, and has brought so much pleasure into your life, not to mention the unique fun of playing in a band. Go talk to your Doc,and explain the situation re quitting playing. I actually printed off some stuff from these posts and showed them to the PD specialist nurse a couple of weeks ago and she prescribed the meds I needed. It may be that a tablet taken regularly will give you back your abilities as a player, maybe not 100% but if your'e anything like me good enough to go out and gig and record regularly. Good luck

Davebass

Edited by davebass, 02 March 2011 - 03:21 AM.


#13 Lynnt

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Posted 03 March 2011 - 07:11 PM

Grateful thanks to both Dr Okun and Sue for taking the time a trouble to reply to my post so quickly. Interestingly I did wonder if the medication I had heard about was Levodopa based, but when I suggested it to the Parkinson's nurse she said she would definately not put me on "that" but recommended a "change of lifestyle" instead, when I asked her what she meant she said she meant that I should give up playing the bass. Helpful or what !


Shocking insensitivity! Unbelievable. I'm delighted to hear that you can still play the bass. I was diagnosed Feb 2009 at 41. Madopar has made a dramatic difference to my ability to play the guitar. I don't play for a living, but I do teach guitar (I'm a primary teacher and music is one of my specialisms). And, yes, madopar is a version of the dreaded L dopa. I am on a high dose of ropinirole, which increases the effectiveness of the madopar so it can be kept to a low dose (thus decreasing the risk of dyskinesias). I can't stress enough what an impact this drug has had on both stiffness and tremor. My advice would be don't dismiss the possbility of taking some form of L dopa if you want to continue to play your instrument effectively.

#14 Lynnt

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Posted 03 March 2011 - 07:14 PM

Hi "Early onset", it is a such shame to give up playing an instrument that has taken years and years of practise to learn, and has brought so much pleasure into your life, not to mention the unique fun of playing in a band. Go talk to your Doc,and explain the situation re quitting playing. I actually printed off some stuff from these posts and showed them to the PD specialist nurse a couple of weeks ago and she prescribed the meds I needed. It may be that a tablet taken regularly will give you back your abilities as a player, maybe not 100% but if your'e anything like me good enough to go out and gig and record regularly. Good luck

Davebass

And now that I have actually read the rest of the thread I am delighted that you are experiencing the same success with Madopar. Wish you the very best.

#15 Lynnt

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Posted 03 March 2011 - 07:28 PM

I performed guitar for years before being diagnosed with early onset Parkinson's and tried beta blockers thinking it was simply stage fright (don't recall what kind). They helped very little and, according to my bandmates, "dulled" my performance.

I haven't yet taken any PD medication, but reading this post interests me. I have almost entirely quit playing guitar because of the difficulty caused by Parkinson's. I've been afraid of beginning any medication, fearing I would only build up a resistance and the medication wouldn't work later in life when the symptoms are more serious and I "really need it."

Only now while writing this do I realize I haven't yet fully come to grips with my disease.

I am also a guitar player of many years (never performed for a living, but I teach it, and I love it) and was diagnosed with early-onset in 2009. I took beta blockers (proprananol) after my initial diagnosis of essential tremor for two years prior to that. Didn't reduce the tremor, and definitely dulled my thought processes. Please do not delay taking anti-pd medication. When you take the right combination of drugs you will find that the improvement is, and this is no exaggeration, quite miraculous. In addition to this there are drugs such as Rasagiline which have been shown to slow progression. Don't deprive yourself of quality of life now.

#16 Dr. Okun

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Posted 06 March 2011 - 08:21 AM

Thank you for all the discussion on this topic. I really enjoy PD patients helping PD patients.

One comment I would add is that sinemet is not dreaded or terrible. It is still the best and most effective PD medicine and if dyskinesias or other issues develop due to disease progression, the dose and interval can simply be adjusted.
Michael S. Okun, M.D.
Author of the Amazon Bestseller Parkinson's Treatment: 10 Secrets to a Happier Life
National Medical Director | NPF
UF Center for Movement Disorders & Neurorestoration
Read More about Dr. Okun at: http://movementdisor...hael-s-okun-md/
or Visit Parkinson's Disease treatment and research blogs at:
NPF's What's Hot in Parkinson's disease
or his parkinsonsecrets.com blog for treatment tips




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