So it has cured your tremor?
Yes - but at the cost of losing 5 kilos and feeling sick all the time. Funnily enough I feel better in the evening and I can eat a meal with a glass of wine. I did have a period of a month or so when I felt OK but then the nausea reappeared. It’s just so great to be able to play in bands again I’ll have to put up with it. I’ve started PD Warrior which is discovering muscles I had forgotten. After about 20 mins of that I’m throwing up! Isn’t life fun!
I’m feeling so depressed right now, I am a lead guitarist in a band who can’t play simple stuff properly anymore with my left (fretting) hand. Diagnosed in Jan '19 its gradually getting worse, which I knew was going to happen, but not this quickly! When I am practicing songs at home it’s getting me so frustrated, I look at my guitars on my wall and wonder how much longer until I sell them all (very sad).
I’m on Madopar(50/12.5)x3 and ropinirol (4mg)x1, its all been complicated because of my terrible sleep pattern I’ve had since diagnosis and being on 12mg of ropinirol originally. Is there anything more I can do medication-wise does anyone know? My consultant has been supportive and my nurse is good, but nobody seems to understand how utterly devastating it is when you are looking at the prospect of something that gives meaning to things and purpose, disappearing for good.
Have u looked at cbd oils
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Nixnocks
I keep playin but not as much. I’m in band and also play harp since pd more, also sing and strum sometimes. I rest on the day of a gig ie: do as little as possible then go to gig , let others do most of the setup and take a beta blocker (propranol} for nerves. It usually works this way but I don’t do anything during the day .
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Hi Nixnocks, that’s a real shame mate and I empathise so much. Until three months ago, I had virtually stopped playing guitar in the same way as someone walks away from a lover! My medication was 1mg Rasagiline and 1.57 mg Pramipexole daily. However, my PD decided to add 3 X daily tablet of CO-CARELDOPA 25mg/100mg (Sinamet?) and my guitar playing along with my speech started to improve greatly. I sat down one night after playing a whole tune and cried. It worked for ME and I so much hope that it would work for you-though all of our personal Parkinson’s experiences are different. Good luck fellow music lover:+1:
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I rushed that msg a bit and just enlarging on it here. I am 10 yrs diagnosed and like you my main hobby or passion (not a pro … are you?) is music and i’m in a trio that gig about once a month my role being doing a lot of the singing , some rhythm acoustic guitar and I play the harmonica. When I got diagnosed I wondered if that was it for the music but I started woking on the harmonica to compensate in the hope that I might get a role that doesn’t require me to stand centrestage and sing… I never was a great frontman and post PD less so. So I play less gtr and more harp now … the thing that gets me seems to be the setup of the pa (which I supply) and the social side b4 we play … I can peak too soon and have nothing much left for the playing itself.
For a year now I have been playing with a blues/rock band as the harp player … I don’t have to set up or supply PA , don’t have to talk to the audience (either of them!) and my gear is a tad simpler. This band play more often and do long pub gig sets of at least 2 hours.
Nixnocks I wonder if with it being such a recent diagnosis for you perhaps you are still in shock and I would guess that you have a lot of pressure on this activity (guitar playing) because you value it highly so the pressure increases the stress and makes things harder .
As DETECTECOM describes there may be a way for you to keep your hand in … for me it is playing less and really resting on gigdays with a beta blocker to ease the nerves but largely it works… for yu it could be something else …experiment is my advice !
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Thanks for your thoughts and advice guys. I am currently going through a medication change because of my sleep problems. However (and I will post this on the main forum re sleep too), the reduction in Ropinirol has seemed to have = solved my sleep issue. I woke to my alarm going off for practically the first time in a year and had a full week’s sleep which was amazing as you can imagine. The negative side of this seems that the reduction in ropinirol has also slowed my brain/left hand down to a point where even a simple blues minor scale is unplayable. I’ve got three gigs coming up (one an audition) starting March 21st and I am close to telling the boys in my band that I’m either going to have to pull out or drastically reduce our set. Playing lead has turned from a challenging pleasure into a terrible pressure. I can sort of hide it for now but my soloing is now something people will really notice. I am going to ring the nurse up on Monday and beg her to see if I can add anything that can help me although I really don’t want to go back to the 2-3 hours a night sleep again. I have some cbd oil but admittedly haven’t tried it so I’m going to try that now and see. I’m not knocking harmonica or singing but guitar has always been my things since I was very young, I’m certainly not pro but I would consider myself moderate to advanced (v difficult to judge oneself!) - for example a few months ago I could play all the led parts live on stage for GnR sweet child, ease through Gibbons Gimme all your lovin rock/blues licks but now I sound like a garbled mess particularly on the upper frets and upper strings. I certainly don’t play professionally. @Detectcom, I wonder if the careldopa is similar to madopar?? Ive never heard of the other two medications you mentioned so I need to look into them and mention to my PD nurse. Once again thank you for the replie, means a bunch.
Hi Nixnocks, I would imagine that (if) anyone has a profession impaired by PD, it would be a double whammy on top of just coping with the disease. I am a self-taught amateur who nevertheless enjoys every minute of playing. Oh how I would love the gift of painting. I must deviate here as I recently noticed a guy in a store and he had a very profound bilateral tremor. I took the great liberty of asking him how long he has had PD. Unfortunately, not only did he not have Parkinson’s but he was affronted by my general assumption towards a complete stranger! Lesson learned!! However, I apologetically charmed him over (lol) and after telling me he had a different kind of neurological problem, he went on to tell me he is a professional portrait photographer. Imagine the devastation of trying to hand-hold a camera and focus😳? We are all doomed?..No! Of course not, we are all alive and breathing. Anything and everything is possible if to a lesser degree than before. Hope, determination and self belief are beneficial. No idea if your drug is the same as mine but keep on enjoying your playing👍
I couldn’t find edit for m above post. The word “profound” should have been “pronounced”.
So a little bit of positive news. After increasing my dosage of Madopar from 3x 62.5 per day to 3 x 125mg per day, I had my first practice last night with the band and I got my old hand back! I was amazed and overjoyed, I honestly feel like crying but this time tears of happiness. I wouldn’t say I’m back to 100% of what I was 1 year ago, however I’ll take this if it’s the best I can get! I’m still a little ‘bent’ up with my index finger which now bends and I struggle to straighten it properly like you should or like I used to but I can learn to compensate. Also I have to be really careful with my shaking hand when resting between parts or songs as it has an annoying habit of slapping the neck of my guitar to its own beat.
My wife suggested I relearn and swap hands but after 30+ years of playing that seemed like a desperate measure. So to those reading this that are contemplating stopping, don’t give up on your ‘lover’ yet, there may be medication alternatives that could transform. It’s still early days for me but I am so happy right now!
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Whoohooooooooo:+1:
great result. You won’t want to put it down now. Many congrats.
Cant compete with you guys, but i had Written this rubbish rhyme anyway - it explains a bit about my experience with the Guitar-
———————————————————————
SIX STRINGS.
When I was just a mere lad
Back home In Wales with Mam and Dad
I dreamed of oh so many different things
But mostly I dreamed about six strings
So one fine day I bought me a Stratocaster
Which frankly was almost a major financial disaster
The cost back then was oh so very much
My old man said “whaaaat” ’ I’m not paying’, We’ll ‘go Dutch’
So part time job & saving hard began
All my dosh saved in an old tin can
And every Friday the tally man came round
To collect my pounds and half a crown
I practised hard on my posh guitar
Hoping one day to become a star
Well one ‘Thomas Jones’ I did once follow
Although it was a local gig in some sleepy hollow
He wasn’t famous at all in those bygone days
We all smoked and drank and all those ways
My group and I each smoked a pipe
Didn’t like it - don’t believe the hype
Then I gave it all up for another thing
and anyway I freely admit that I couldn’t sing
many years and more went by
Marriage & travel across the sky
When one day on impulse I bought another Fender
The wife said what? Have you been on a bender
I could have a new lounge carpet for that price
So after the arguing out came the dice
She lost the toss,
I showed her who’s bossl
Yeah right, shot my self in the foot I think
But time heals I guess , but we got close to the brink
Then, my Strat Plus aged seven which was unmarked & still like new
Shining in a beautiful Sonic Blue
Almost unused "cause our friend Parky came to call "
And for those seven years I hardly played it at all
But never mind I thought it’s still worth a few bob
And the local music shop did a really excellent job.
Of finding it a brand new home
So gone but not forgotten & the inspiration for this feeble poem
Yup, This damned Parkies can sometimes be so tough
But also sometimes there can be smooth with that bit of rough
And even though I could no longer play
I still held out hopes that ‘maybe just maybe ’ one day’
The meds would work & it would come back just ’ like riding a bike ’
And back to six strings would go ‘young Mike’
That day arrived as I hoped it would
And 2 years last Christmas I got me an acoustic Tanglewood
Parkies means that I still can’t play anything like I did before,
But I sit upstairs quietly behind the closed door
Picking and strumming which the Doc says is really good for me
And I’m enjoying once again ’ my own kind of 'therapy
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Great words Mike. I enjoyed reading that:+1:
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Glad to hear got got reunited with a/‘your’ strat. So many ways we have all got our obsession. Mine wasn’t a dissimilar story!
Hi Tom:
I just stumbled upon your forum. I am 57 years old and live in Atlanta. I searched for this topic and couldn’t find anything in the US. I’ve been playing guitar for probably 35 years off an on. Lately it’s been very hard with Parkinson’s. My left hand is very weak no matter how much I concentrate and focus it doesn’t get better. I can play parts of songs well and then other parts are crap. I wish I just couldn’t play at all. It would be easier to accept. It’s almost like Parkinson’s is playing a game with me. The disease let’s me learn the first half of a song and then it shuts me down and doesn’t let me learn the rest. I like to play Gary Moore, Joe Satriani, southern rock and classic rock. I had five guitars and started selling some of them off now just basically play a PRS custom. But that’s if you call what I do playing. I am at not depressed, just frustrating because I would love to play on a regular basis. Being that I can’t play guitar very well I still need to be creative so I’ve taken up writing books in the past couple of years. It’s nice to know there are others out there that love music and are the same situation as I am. I guess we just need to keep on trying. We can never give up. I’m convinced that they’ll be a cure sometime during my lifetime. And when it happens I plan on getting a Les Paul and starting a band in the old folks home;) The rocking never stops when you have Parkinson’s…literally and figuratively.
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Hi Pfigur (how about a real name:+1:)…my PD was diagnosed around 2013 and looking back, it was a fair while before I notice my guitar playing skills deteriorating. I have never been lucky enough or skilled enough to do all the fast rock stuff but nevertheless it broke my heart to lose a high percentage of strumming and finger picking enjoyment. Last year I started 25/100 Co-caroldopa (sinamet) and started showing signs of improvement quite quickly and also my speech showed noticeable improvement. I think I started to regain confidence generally. Much in the same way as Viagra that can “help you perform”, I am fully aware that with the passing of time, medication may need to be upped to continue performing or just playing in my case BUT I am really enjoying guitar, ukulele and mandolin playing again. Like you, the need to be creative is quite strong and I too enjoy writing and ten pin bowling with my son. Life is good and wife is wonderful. Nice to hear from you. Get that Les Paul.
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guitar playing may be better for a patient since it provides a fabulous feelings. Fender American Ultra Jazz Bass V is a good guitar you can use during your parkinson. But this is wise to consult your doctor.
Hi, I am from Sri Lanka, thank you for accepting me on this site. I am 59 and was officially diagnosed with PD 3 years ago, but my wife and family noticed certain signs months before that. I was diagnosed just before lockdown in March 2020. I moonlight as a musician and used to play twice a week one of the gigs was at a beach restaraunt which was a cool gig. During lockdown i hardly ever picked the guitar up and when i did a year later I realized something was radically wrong, i was never a great guitarist or singer, but after PD I sounded like an absolute beginner, so I started doing vocal therapy and also playing for an hour a day, I alternated between songs that required picking and strumming. Yesterday I was called by a friend to play for a very important function, I initially refused but my friend said he understands and all i need to do is sing a dozen songs or so and he would do the heavy lifting. I was nervous and stressed out and the first song i played was awful, I wanted to kick myself off the stage. within the first hour i sang 3 songs and i wanted to just run away. Since the occassion was for a launch of a new SUV for a welll known brand there was a video on a giant screen of the new vehicle and there were some speeches as well we did not play for about another hour, at that point even though it was still early I opted to take my meds before I had my dinner about a half hour later I got back on stage and I felt confident so I opted to sing a simple song which I believe I did well, i tried a couple more and it worked out well. My two cents is this, just keep plugging away, keep doing the vocal therapy, that is very important. Cheers
Btw, for those of you finding it hard to hold a plectrum, I use a very soft Nylon pick which gives a better grip and also bends so its easier to hold on.
Hi Lenski,
We just wanted to take a moment to welcome you to the forum. We enjoyed your uplifting story and hope to hear more. You’ll find other artists on the site with various skill sets, so we expect you’ll get along brilliantly here. Certainly your suggestions regarding picks will be useful to the other musicians in the community.
Just so you’re aware of the resources available to you, do have a look at our website at https://www.parkinsons.org.uk/. Also, we have a free and confidential helpline staffed with wonderful advisers who are happy to answer a range of questions and offer loads of assistance services. You can reach them on 0808 800 0303.
With our warmest welcome,
Jason
Forum Moderator