Wobblygirl
Forum Replies Created
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I was getting really tired of my husband saying he felt the same when I complained of tiredness, dizziness, etc – then I realised that what he is trying to do is persuade himself that I’m really OK and all the symptoms are old age (I’m 80, he’s 84). He’s completely supportive in every way, and this isn’t a criticism, but I suppose he can’t face the thought of me steadily getting worse.
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One green kiwi fruit every day works for me!
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I hope you get some good suggestions. I’m nearly 80 and play French horn and tenor horn – although at nothing any where near professional standard. Five years ago when I was first diagnosed I couldn’t play anything because of the tremor, but Madopar calmed it down so I could get back to the bands. I do find though that my brain and fingers don’t seem to synchronize as quickly, and really fast passages are beyond me. I’ve dropped back several seats – and I must say I’m finding it stress free and more enjoyable. At least I can still play.
Having said all that, it must be devastating for someone who was a really good player. Fingers crossed that someone comes up with a solution.
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I’ve just discovered kiwi fruit. One a day is working well – at the moment. No idea why!
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I’ve been taking Azilect 1mg and Madopar 125 3x per day for four and a half years. So far no progession in symptoms. I’m not sure whether it’s the meds or daily exercise, but I’m not changing anything. I’m certainly much better than I was before starting treatment. I went off chocolate completely for the first four years but I can now eat a small piece. I drink a glass of red wine every night with dinner. I find full fat cheese makes me feel sick but I’m OK with hard cheeses.
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The first thing that bothered me was that I couldn’t blow a straight note on my French horn. I thought it was just age related – but then I developed a tremor in my left hand.
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My car hand break light was on all the time – and beeped. I took it to our usual mechanic who couldn’t find anything wrong and said he’d have another look next service. Today I discovered a small black Vietnamese sweet was stuck under the handbrake – a present from a lady in our PD exercise class. I’m feeling very clever and can’t wait to tell the mechanic.
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We worked as volunteer teachers in Vietnam 2000-2002 in an area which had been heavily contaminated with Agent Orange. I was diagnosed in 2018, but looking back I realise I had symptoms for some time. No idea if the pesticide was the cause, but there is no PD in my family. Then again, though, why is my husband OK? Is there a genetic predisposition which is exacerbated by contact with pesticides? Who knows!
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Adelaide Australia.
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I play French horn – badly, but I love it. I find my main problem is breath control. I’m an expert on vibrato – I just can’t hold a straight note, especially if I’m nervous. I’m happiest hiding behind more accomplished players because as soon as I’m stressed everything goes to pieces. I’m just glad I can still join in. Before I started on Madopar the tremor was so bad I couldn’t hold my horn and I was really scared I would have to give up. Playing music in a band is such a joy and I’m sure it helps cognition. Fingers crossed I can continue for a few years.
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I started Levodopa as soon as I was diagnosed because the tremors were stopping me playing my French horn. It made me very sick so my neurologist tried Azilect. That had no effect so I combined levodopa and Azilect. The sickness lasted for two or three months but I persevered because the tremors went and I could play again. That was nearly four years ago and I’m still on the same dose. Tremors start sometimes if I get very stressed, but otherwise I’m OK. Exercise is very important. I do three classes a week which work on strength, balance and mobility. That’s great fun – and humbling because there are people there much worse than I am who haven’t given up and we have a lot of laughs. My music room doubles as a gym with cross trainer and other equipment. I try to do about an hour a day. I had trouble sleeping – I woke at 4am and couldn’t get back to sleep. I take melatonin – and try to keep the bedroom as cold as possible. That seems to work. The people who do best with Parkinson’s in my experience are those who can manage to keep a positive attitude (doesn’t work every day!) However, as others have said, we are all different and we have to find our own best ways of dealing with it.
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As someone in the relatively early stages of Parkinson’s I feel so sorry for caregivers and admire their dedication. For myself, I would hate to be in that state of dependence and I’m determined to end things before it gets to that stage. I just wish it was a choice available legally!
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Sorry. I’ve just seen this. I’m very much an amateur – especially on French horn. I play in a brass band and a concert band. Before I was diagnosed I thought I would have to give up playing, but I respond well to Azilect and Madopar. I get a bit shaky if I’m nervous but I’ve dropped down to second horn in the brass band – boring music but at least I’m still part of things. I’ve been the only horn in the concert band for a few months which certainly has been stressful, but I tell myself I’m all they’ve got so they’ll just have to put up with me! I’d hate to give up the music. I don’t know much about woodwind. Is it the breathing that bothers you or just general shakiness? Wouldn’t it be good if we could form a PD band!
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I can’t eat chocolate. I used to love it and I’m still tempted from time to time – but it just makes me feel sick. Also I seem to sneeze a lot. It’s a bit embarrassing in these Covid times.
PS I’ve just read further down and discovered a fellow ex chocaholic. My sense of smell is excellent and I enjoy the rest of my food.
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I’m 78. No “off” times as such, but I do have “off” days – usually when I’ve done too much the previous day or let myself get stressed. I also use the red light coronet twice a day.