Here goes with my first post on a Forum of any sort. No doubt someone will direct me to somewhere where this has been asked before, so sorry if it has?
I was diagnosed with PD in Sept 12. I have a tremor in my left hand which has now progressed to my left leg as well. I tried Propanelol last year but this had no effect on the tremor and just slowed me down & made me feel fatigued, so I came off them. I have since been offered meds twice by my Specialist but declined on the basis that the longer I can do without the better? I'm wondering now if that is the right approach? Should I been taking what I'm offered to stop the tremor and make the most of the time I have, or should I wait till I really need assistance? The Specialist I saw last said there was no conclusive evidence that one way or the other was better, the first Specialist said staying off meds as long as possible was a good decision.
Anyone have any thoughts?
I was reluctant to start leva dopa, worried about long term effects but my Neurologist made sense. He told me that it was better to have a good quality of life whilst I am young enough to enjoy it (I am 55) and worry about the long term effects when I have to.
Madopar has made an enormous difference to me, it allows me to stay working and enjoy my life and I intend to carry on doing exactly that for as long as possible. The tremor has almost completely gone which is wonderful.
Hi Aylesbury, and welcome to the forum
I'm with Caroline. There's no point in waiting for jam tomorrow when the grass is greener today (er, if you see what I mean) on meds. There my be a case for saying that once you lose function it's difficult to regain it later (in other words, tomorrow's jam will be mouldy). (That's enough extending of mixed metaphors.)
There's always the compromise (if that's what it is) of dopamine agonists and MAO-B inhibitors (which I'm on) rather than levodopa. 18 months in, my symptoms are still better than they were before I started treatment. I still work and I do most of what I want to do. Gimme the drugs, is what I say.
Hope this helps, and best wishes
Thanks to both of you for your comments.
My initial reaction as I said was to do without if possible but having thought about it since my appointment last week i'm not so sure. As you say I might well delay until the symptoms are worse then find the medication is too little too late and have missed out on some good years. I have an appointment with the nurse next month so I will have a discussion then. Do the Nurses prescribe drugs or would it have to go back to the Specialist, don't see him for another 6 months?
ps: how do you get rid of a duplicated topic? Told you I was new to this game!!!!
this is a question i ask myself everyday (i am 52). I have been diagnosed since sept 2012 and my neurologist is reluctant to give me anything as he says it is unlikely to help the tremor and the potential benefits to the other symptoms are so small they out weigh the possible long term side effects of being on medication.
he said i will know when the time is right as it will start to affect my quality of life. however i do agree with other people who have posted a bird in the hand is worth two in the bush to use another metaphor.
Only hindsight could prove our decisions right or wrong and then it could be too late. good luck in deciding.
This is how I see it:
You start with medication when your quality of life is affected by the PD symptoms. If you are prepared to suffer in silence and delay treatment the drugs will have to work harder to overcome the now accumulated problems. And there is the argument of the proverbial bus that might hit you before time.(more likely if you are wobbly).
When you do start take the lowest dose that does the trick. Give it time to work before you are tempted to increase to the next level.
It's a bit of a dilemma, the only real problem I have is being virtually unable to write, although the tremor makes me feel a bit self conscious, so in my mind my problems are quite small compared to others. However I feel if the tremor could be got rid of (temporarily) I would be almost back to normal. and maybe be able to forget I have PD for a while? As you say it would be a shame to put up with things for months/years only to find that either something else gets you or the meds are not that effective when the time comes to take them. You can't turn the clock back.
I've got a few weeks before I see the nurse so I'll keep mulling it over. The comments are much appreciated, thank you all.
Hello Aylesbury - I was dx 3 years ago. My only symptoms at the time were a tremor in my right hand and handwriting that tended to get smaller and smaller and more and more difficult. I work out of my home so there was no problem with staying on the job. The day I was diagnosed, I began a regime of maximum amantadine and low dose of mirapex (.5 mg) 4x daily. It was magic. The tremor disappeared within a day and only reappears when I am stressed and my hand is hanging by my side. I was 65 at the time of dx and decided to start immediately to preserve the quality of what remains of my life (2 out of 3 neurologists agreed with me).
www.wpgchap.blogspot.ca (I've got that parky feeling)
Many thanks for that, I'm beginning to err towards 'going for it', these comments are very helpful.
All the best
I too have a tremor in my left hand, and left foot (diagnosed in March 2011, I'm 60). My neuro's advice and my wife's research trawling thro websites convinced me to delay taking meds - so far so good (tho I do take a multi-vitamin and 1mg of rasagaline to hopefully slow the degeneration - tho the verdict is out as to whether it does any good.)
As you know PD is a degenerative disease, I believe we should do all we can to try and slow down the degradation. Meds don't do that, exercise, meditation (ie deep rest & stress relief), and good food (for instance green smoothies) do!
By the way, I found this article today: Parkinson’s Tremor: Different Cause, Different Treatment (April 4, 2011), you may find it interesting.
PS: I am not a doctor just a PwP.
This is such an interesting thread. I'm 30, was diagnosed last year at 29 and put straight onto a dopamine agonist by my specialist. Many people I've spoken to, however, are being told to delay taking anything for as long as possible. It's amazing how different the advice is given by different neuros in different places.
My tremor is much improved, very muted, as are many of the non-motor symptoms I was experiencing. I think this was the right choice for me. I was struggling so much more before the meds. But then it's different for everyone. Can you cope as you are? There's no point thinking about how things will be in 5, 10 years' time, but how you want to feel now and whether being on meds can help you.
You're right, the variations between the various Neuros' prescriptions is truly baffling. There's a PhD in there for someone, surely - or a horror film!
Could you tell us what dose (Sinemet I assume) you have been put onto? For myself, after 2 1/2 years since Dx, I am on 4 X 1/2 Sinemet CR 25/100 per day. This feels better than 3 tabs per day, but I still don't know if 4 is the optimum dosage.
Actually I was put on ropinirole (Requip XL) and titrated to 14 mg, but it's not been absorbing properly so I've switched to the instant release and am on 3 x 3 mg for now.
Just have to cross my fingers and see how it goes.
When to start on medication - my dilemma too. Now 55, dx 3 yrs ago. Thought to have had it for 8+ years.
Current symptoms: tremors on my left side, cramps in calves and foot, lazy left foot that affects my gait, stiffness in wrist and hand, drooling, stiff shoulders, sore elbow joints, lower back pains, lack of smell, jaw misalignment.
Treatments/actions: healthy diet, exercise regimes at gym and at home, understanding my limitations and finding a good work/quality of life balance, finding a reason to smile each day and count my blessings - even with PD.
Meds and side effects - not sure I'm ready to take this on yet,
If anything - I now value and appreciate every minute of every day maybe knowing that my tomorrow's are so uncertain and this enables me to capture and enjoy all that is good - for now.
Regarding Rasegeline (Azilect)
The neuro protective effect is not universally accepted but its effect in enhancing the availability of whatever dopamine is in the system is definite. It knocks out an enzyme concerned with dopamine regulation which is busy mopping up "excess" dopamine. As PWP's can hardly be said to have excess dopamine, it can delay the necessity for other meds. or prolong the effect of what meds you are on. I found it did just that but some people have noticed little difference. On the other hand, with a progressive (now there's a misnomer if ever their was one) its difficult to tell how much worse you would be without whatever you are taking.
Have,nt been on for a while, i was diagnosed in june 2003 and delayed meds for nearly 4 yrs ,when i was first diagnosed by a consultant neuro he wasnt from the area i live in he came from newcastle and held clinics once a month where i live so he refered me to the local specialist who is also the geriatric doctor, and the pd nurse who he worked with came to see me at home and she told me i didnt need the meds yet i totally agreed wIth her, but both she and my husband agreed 4 yrs later that the time was right the trouble was convincing me that i now needed a hand eventually i agreed i new the time was right so if you think you can cope then your probably right believe me you will know when you need help and dont let ayone tell you different you know your own body you just have to listen to it.
Had bed lever fitted today so much easier getting in & out of bed takes the pain away from neck & shoulder.fitted by ot also helps to turn in bed ! sorry lilly for interrupting.
I find this debate very interesting, as I am in the same position, i.e. whether to start taking medication or not.
I must say that I agree with Lilly, that if the symptoms are still manageable, then why take the medication? For the time being, I think I will hang in there and wait and see.
The Parkinson's nurse actually offered me some Levodopa medication a couple of weeks ago, but I turned it down. I am sure I shall know when the time comes for me to go on medication.
Of course it is a good idea to go on Azilect, if you can tolerate it. Unfortunately, I can't.
I was diagnosed in April this year although I lost my sense of smell 10 yrs ago, had left hand and leg tremor and bradykinesia since last year. Also had painful right hip for a year which eventually responded to U/S guided steroid injection.
After weighing things up, decided to start on Sinemet tomorrow ( low dose for 2 weeks increasing to 125 mg x 3 daily thereafter). I'm 67 yrs old, just retired and would like to enjoy the new chapter in my life! If I don't give it a go, I'll never know if it works for me or not. I was also encouraged by the positive comments on this forum.
welcome purdy, thats right you never know ,& sinemet is one of the oldest & still the best drug for pd.well thats what i think.