Cello playing

[Johnmo]

It was a passing interest. I learned the Bach prelude. I'm retired, 65. I've had this pd for years I think. I can't attack properly. It gives me a sick feeling across my chest when I try to bow convincingly. diagnosed in June because of my posture. it's frightening me. I don't think Ropinarol 8mg does much. l-dopa made it worse. hard to say. thought I'd better report in. on the nhs in England

[Jeannial]

That's a recent diagnosis, like mine John. I was prescribed ropinerol but didn't take it as I am frightened of the side effects which I understand can be excessive gambling, compulsive behaviour, over sexual behaviour, overspending, Well, I dont want to gamble excessively........

[Johnmo in reply to Jeannial]

Haha, thanks Jeannial. I wish. They're on my bucket list. but all I get is this dreadful slowing down, paralysis, lack of will. Need some kind of booster for the freezes. I'm on tramadol for the back pain and as an anti depressant. but I'd like to try Ritalin to get me moving. it's so hard to discuss with the medical types

[Jeannial in reply to Johnmo]

Yes it is very hard to discuss with the medics.I want to know why I was prescribed ropinerole ie what symptom is it supposed to address? but no one seems able to tell me. So I am not on anything, I dont think I am having freezes, just tremor in left arm occasionally.

I am terrified pf losing my driving licence as I would be stuck ( no buses)

Does the Tramadol help your back pain?

[Johnmo in reply to Jeannial]

The item about functional medicine for pd, like proper individual treatment. there are such doctors I think. I'm thinking the tramadol is just to keep me happy. my back still hurts. I wonder if it's more to do with muscle tone. Have they said anything about driving. You're supposed to tell your insurance. I don't have to drive but I like my camper van. The cello would be possible, but the saxes are heavy. I'd have to pare down

[Johnmo in reply to Johnmo]

I was scared off l-dopa because I thought I was getting the dyskinesias

[Astra7 in reply to Johnmo]

It seems that this is a myth and it is fine to take l-dopa without fear of dyskensia. Maybe the medication has improved or something. You play the cello and the sax??

[Johnmo in reply to Astra7]

I'd love to learn the answer and have confidence in the drugs. so many opinions. I had spinal rehab before diagnosis. I was allowed six sessions, for kyphosis/scoliosis. it was good but difficult at home without the equipment and the group.

[Johnmo in reply to Johnmo]

I go to a mental health resource centre. There's a jamming group and a singing group. I use a looper to dub phrases. the cello is experimental.

[Johnmo in reply to Astra7]

I played a few different instruments before pd. The intuitive control that entails goes awry. The cognitive/motor feedback goes wrong. Ive not had any results with dopamine enhancement. But once with asparagus and cbd I was wonderfully symptom free.

[Johnmo in reply to Jeannial]

We are told to see our gp to catch the disease early but it seems to come down to drugs for symptoms that were developed several decades ago. I asked about participation in clinical trials but there's no enthusiasm

[paddyfields]

As I understand it, as the symptoms PWP's present with are so variable so their response to medication varies. The UK NICE guidelines recommends that PWP's are given rehab upon diagnosis but it doesn't seem to happen and I found them useless for my hip/muscle problems. However,, with such a distinct PD effect as stooped posture I would have thought some targeted physio should be available. Failing that your GP should be able to refer you to a gymn for appropriate exercises if only to halt the deterioration.Some specialise in PD and MS etc. See this sites publications for what the various drugs do

parkinsons.org.uk/content/d...

[Jeannial]

It all seems so hit and miss, no proper treatment plan

[Johnmo in reply to Jeannial]

I know. I've done a course in medical physics. There's some clever people about but they tend not to be around when you want them. I'm too woolly. Good science is difficult. But it can be just as fruitful to use intuition, what feels right. I believe in that approach, but I need a cooperative medic. I just tried to phone neurology but there's just the ever so cheerful answer machine. pd doesn't seem very important. Spastic?too bad, leave a message

[Johnmo in reply to Johnmo]

Or maybe I got urology. it's hard to tell

[vincea]

johnmo, don't give up playing - find a way. I was diagnosed in June of 2014. About all that I had then was an uncontrollable right hand and a left leg twitch. I was prescribed carb/lev - 1 and 1/2 pills three times a day, and one at bedtime if I needed it. I didn't take that night pill. I was fine until the last 5 or 6 months ago. Why am I telling you this? Well I play electric bass in two different bands, and almost had to give up playing because my right hand would not let me play my style of bass. I dug in and found a way to utilize my shaky hand to accommodate my playing. I now consider myself an accomplished bassist who has a medical condition. BTW, I'm 70 years old. One more thing that works wonders for me - my doctor prescribed 'amantadine' to supplement the carb/lev, and those pills reduce every PD symptom (shaky hand, twitching left leg, rolling shoulders, anxiety, masked face, low voice, and small handwriting) was reduced about 90 percent. I did discover that I cannot take the amantadine everyday, as after about the fifth week, I started shaking excessively. My Neuro said to go off the amantadine. I did, for three days, and was back to my normal PD symptoms. Now I take the amantadine (one morning, one at noon) when am going out to play bass, or shop, or whatever, and I look and feel quite normal).

[Hidden]

Johnmo, Welcome, I agree with everything that Vincea has said above. It is possible that Amantadine may be your ticket, it works for me. All of us eventually will have to determine our own priorities as we live with this "CHRONIC" disease, in our own way. However if I may, I suggest that you do everything possible to continue playing music, maybe you can increase the number and frequency of lessons / practice sessions. If you concentrate very hard on playing the PD may go away while you play. Parkies need physical exercise but mental exercise is also very important plus there are other benefits that music provides and there are many examples of fine arts painters, etc that have been able to overcome. Your music may not be high on any one else's priority list and everyone close to you will certainly have a list for you. We tend to try to please them but you need to think about John.

As the disease progresses we need to double down, concentrating more and more on fewer things that are important. Stay with the music, it is important.

Leonard Cohen passed away last week

youtube.com/watch?v=YrLk4vd...(Not working as expected?)

[JohnPepper]

Hi Johnmo. No medication does anything to heal or even slow down the progression of Pd. So don't look for a medication to sort your problem out.

Fast walking is the only thing that I know of that will slow down or even reverse the symptoms of Pd.

View my website - reverseparkinsons.net and read all the articles I have there. If you would like to write to me you can and I will answer your questions, as a fellow patient.

I have been able to reverse most of my Pd symptoms and have lived, medication-free for the past 14 years, although I still have Pd, I live a normal life, at the age of 82.

John

[Johnmo in reply to JohnPepper]

Aha 😊 the answer is in reach. I shall live a normal life. plenty of exercise is the answer to most things, and plenty of vegetables. and I seem to be happily on 12mg of ropinarol without side effects nor with any noticeable therapeutic effects. but playing the cello is strangely sickening. I do get the occasional tremor, it depends what I'm doing with my arms and how stressed I am. fortunately I can turn to the sax and the low whistle for comfort. and I climbed some mountains. walking fast goes with the stooping posture.

Cheers, John