Anxious and awaiting confirmation


#1

Hi everyone, I went to my docs about a month ago for a bad back and she noticed my tremor in my left hand. I was called in later in the day to see another doctor , who,I was told, had more understanding of what was suspected. After conversation, and an examination she asked me what I thought I might have?. 

my wife left me four years ago for someone else, I lost my home and set about creating a new life, battling depression at the same time. For this reason, although I was aware something wasn't right (as a keyboard player and guitarist  I was very aware that my left hand was slowing down or " disobeying me" ) . And my balance faltered from time to time. I put this all down to stress and circumstances. I also gave up a little business I was running because it was all becoming to stressful for me, with even small problems seeming insurmountable. For these reasons, I put my symptoms down to anxiety and stress.

I was completely blindsided therefore when she said that she thought me to be in the early stages of Parkinsons .

 

I have waited a month now, with another to go,before my neurology appointment. I have since read many articles on the disease. The question I have is, does anyone else on the forum play an instrument,? And if so what kind of impact has PD had on your abilities? I realise this might seem petty to others, but music really is a huge part of my life.......I have also been unable to sing for some years now, despite having earned a living from it for many years....I wonder now if PD is a contributing factor? 

 


#2

Hi Fingers

my hubby is 44 years old and was diagnosed in Feb with early onset PD, i have suspected that he has had PD for about 2 years following severe shoulder pain and a resting right hand tremor that did not respond to physical therapy, I told my hubby that I thought he had PD and we asked the various medical professionals if this could be a possibility but they just brushed it off saying it was very rare at my hubby's age, in October last year we went on holiday and I noticed his tremor had severely worsened and he was dragging his right leg, the the most debilitating factor was his terrible depression and this really concerned me, when we returned from holiday we paid for a private consultation (as my hubby's gp referred him but said it was not an emergency so we had 4 month wait), the neurologist ordered a Datscan, which came back abnormal with significant dopamine loss, and he was diagnosed with idiopathic PD, this was a devastating diagnosis as my hubby loves to play golf and was a single figure handicapper playing several times per week, his ability to play declined and he became very low, combined with this he is a hgv driver and it appears that the vast majority of hgv drivers with PD automatically lose their licence and potentially their job, BUT my hubby been prescribed SImenet for the last 3 days and he is transformed!! He is currently on a low dose but it has had a dramatic effect, his tremor is much reduced, he feels really positive and he can play golf ! He feels able to face the driving issue and is so relieved that he feels better - please do not despair, with the right treatment I feel sure you can continue to play and enjoy your music! 8 months ago we were in despair but please believe that this does not last and that there is great support on this website and from the medical professionals that have experience of supporting pwp.

regards Klou


#3

 

I'm sure i read of a piano player on the forum not so long ago on the forum on the journey of diagnosis?


#4
Hi Fingers, I freelance doing a mixture of roles, but do work as a musician (sax and guitar) from time to time. I was diagnosed with young onset PD last summer. The slowing/less responsive hand sensation is very familiar, and although my playing is not as good as it once was, medication has really helped. I'm very glad that it's still possible, as I wondered whether I'd have to stop after dx. Played in a show for two months solid over Christmas, and it wasn't really a problem. I hope everything works out ok for you. Best, T

#5

Klou, thanks so much for taking the time to impart this information, I had hoped that medication might provide the possible solution. Great to see you overcoming your early fears. 


#6

T, thanks so much for your input. Very encouraging to hear this story. 


#7

Hi fingers just wanted to say that J of Grey cottage ( member on here ) has had PD for about eighteen years and I'm sure she still plays the piano . Probably who sea angler was thinking of . She's on holiday or I'm sure she would have left you a message . I don't play an instrument but I use my right hand at work all day and very intricate movements . ( right side affected ) . Before I was diagnosed I could not butter a slice of bread , tie laces ,stir a cup of tea without my hand going into spasm , or write . All these things I can do now . I was diagnosed young onset in sep and started on meds straightaway . I had symptoms for few years . 

Keep playing . It has to be good for the muscles , the dexterity and the soul ! When you start on the medication you will probably notice a big improvement . 


#8

 

Hi maddison

It was a fella i was thinking of, sorry cant remember his name. i couldn't keep the butter on a knife too butter the bread with, i use a little wider knife now with a serated edge that seems too hold it on there long enough too get spread on the bread. being a angler i have struggled with knots and threading the line through the eye twice of some quite small hooks.


#9

I play at playing the guitar. Nothing changed for me after diagnosis.  I wasn't good before diagosis and continue to be "not good" following diagnosis.

As for singing, I think most of us suffer some form of change to our voice.  Mine has become soft and quiet, plus, from time to time, I get an excess of saliva which doesn't help.  I did take voice therapy for 8 weeks and it made a huge difference but unfortunately, I didn't keep up the required practising at the end of the session, hence I am back to my quiet, soft self .  Maybe if you took voice therapy, that might help your situation.

I am sorry that it has affected your enjoyment of  life.  You didn't mention if you were on meds.  Once you start on L-dopa, you will be shocked at how your life approaches normality.

Best wishes.


#10

Hi Fingers,

I think I mentioned that I was hoping to be able play semi-quavers in a newbie thread i started last year so it might be me that sea angler was referring to.

I'm fairly new to Parkinsons after only being diagnosed last November, however i do remember playing piano for a friend's wedding back in 2010 and noticing that my left hand (which is the primary side affected) not having quite the fluidity that i expected.  At the time I was mainly playing contemporary music so just thought my left hand was out of practice in playing Mozart!

Being a fairly competent pianist I can also touch-type well and it my deterioration in my left hand typing that partly prompted me to investigate further last year.

I'm on fairly low doses of sinemet at the moment but do still notice that I struggle to play even fairly simple repetitive passages with my left hand, but non-repetitive passages (chords etc) i can manage fairly normally.  I've got a neuro review coming up in July so will see whether he has any further recommendations

Please drop me a line if you want to discuss further..

best wishes

Nick


#11

Hi Fingers

Join the club.  Sorry, I'm not being flippant.  I really know how you feel about the situation of having PD.  and all the horrible symptoms we have to battle with.

I can't call myself a musician but I do enjoy buying easy-to-play music books and spending some time on the electric keyboard practising them.  It does help to keep stronger but the main thing is that I am distracted from everything else that's happening in my life.

I also enjoy playing around with watercolours and trying to make a picture that I can be proud to say I painted.

I've had PD for 16 years now and been through some rough patches but the best medicine to take  is not a drug but having a good laugh with someone!!!

best wishes

Casie


#12

Nick, thank you so much, this all sounds extremely familiar. Still awaiting a proper diagnosis, I have my first neurology appointment on the 26th this month, but I'm hoping that if it's proven to be PD medication might help. like you this seems to have effected my left had quite noticibly. Fortunately playing in a rock band I'm not over dependent on my left hand most of the time though at home I play all sorts of stuff. 

Cheers, Fingers :) 


#13

Hi fingers.  Not that i know everything in any way but if ever you want a phone chat feel free to drop me a message with a number and we could catch up.  Nick


#14

Hi mate,

i played the guitar for years, then become unwell and had terrible problems with my right arm, so I had to stop playing. Later I was diagnosed and put on medication, things got so much better, I've started playing again. I have good days, and bad days that I have to put the guitar down. My singing also suffered, got weaker. Some days it is so frustrating, but if I could give you any advice it would be, firstly, don't automatically put things down to PD. It's so easy to do that. You will know as a singer your voice will change with age anyway, and that goes for so many other things. Steer clear from blaming your PD. Secondly, I have learnt to adapt, I don't play so much, and so much complex stuff now. I have looked for other things in the music industry to get involved in that I can do. For example I do the sound at some small gigs for friends and other musicians. I had never done it before, just bought some equipment , taught myself and went for it. I help some youngsters with song writing and in the recording studios. Gives me great satisfaction, and keeps me involved...adapt!!

thirdly, I'm never going to give up on my dreams, I will keep singing, and I will keep playing and being involved in music. My PD is just another challenge to overcome


#15

Richard  thanks,

I'm already seeking new outlets for my music. I help at one or two music nights which involve younger people and enjoy sharing advice and knowledge. I'm also still playing with my band, just picking the material more carefully nowadays. I'm still awaiting my first neurology appointment (another two weeks) which is frustrating because if there is a definite diagnosis medication might help.  Thanks so much for your advice. :) 

 


#16

keyboard guy is rosewall

i took up guitar and bass since pd

its fun keeps me out of mischief on bad weather days

dont give up on music (although i dont consider the racket i produce is music)

 


#17

Just an update, looks as though I'm officially a club member now.  Got my diagnosis of Parkinson's today at Derby Royal hospital who were superb in every regard. Also met the hospital coordinator for the local support group and came out fully armed with most of the literature that I'd already read on here.

just a quick line to say how grateful I am for the support and knowledge imparted on this forum and website.Thanks to all! decided to have one more pill free day before embarking on my medicated journey tomorrow. Kind of relieved to at last have a name for it! waiting for the next person who asks me if I'm an alcoholic (tremor in left hand ) so that I can shoot them down in flames.....there's an up side to everything :)

 


#18

Fingers,

like you, in a strange way it was almost a relief when i found out. years of GP visits and in the end i thought my GP felt i was imagining my symptoms and just treated me for anxiety. i look back at my symptoms and i most probaly had PD for ten years before a diagnosis, which for me i take as a positive as in it must be effecting me slowly. PD seems different for everyone so my experiences may differ, but if it helps, i was put onto madopar which has been great for me, but i didn't get results for at least a month,  i do get off days as on some days my meds don't seem to work as well, my first thoughts always used to be 'OMG the condition is getting worse!!' far from it....off days happen. my other off days are the type where i feel pissed off, why me ? and i can't  do my flies up !!. i now  able to recognise these days coming and i kick myself up the arse and go and do something nice... you sound a positive guy....keep it that way,  your PD is another part of your life, another challenge, i'm sure , like me, you've dealt with some heavy shit over the years, and come out on top and a better person......you'll do the same with this PD thing..