My husband was diagnosed with Parkinson's last May. He was still in the early stages so the neurologist suggested he went away and came back when his symptoms were inconveniencing him. He is frightened to do this as he has read so many negative comments about medication - particularly the side effects - and so we would both be very grateful for any encouragement other forum members can give us from their own experiences.
Hello Audrey...(my sister's name)
It's so hard to know what to say to anyone about starting meds. People have such a wide range of different reactions. One big advantage that you have is that you can monitor his reactions and contact the doc if you are worried, even or perhaps especially if he hasn't noticed anything himself. I have been very lucky so far, nothing bad, although I know others on the same meds who have had a bad time. It really is suck it and see! sorry if that sounds too flippant.
My husband was diagnosed last August and hasn't taken meds yet either. We are probably the other way round from you guys as I am the one who is terrified of them. I would like it if he had a neurologist like yours who is more cautious. Who knows the right way to go though.
At the moment he is looking after himself more than he has in years, actually probably in his whole life (diet, herbs, exercise, qigong) and is still well apart from the dreaded tremor and a stiff body which he has had for 30 years anyway (builder's back)
What a drag eh!? I wish they didn't have this but I am still glad it wasn't an inoperable brain tumour.
I was DX last March and avoided meds for a few months, only started them under pressure! I started on 1 62.5mg Sinemet tabs 2 x a day and then increased it to 3, then went back down to 2!!! (kept forgetting to take the third!) This is apparently an extremely low dose but i generally feel ok and can cope at the moment. I am about to wean off these tablets as i too am scared of the dyskenesia long term side effects and have decided to start a low dose DA Requip XL after consultation with my PD nurse. Again i am terrified of the possible side effects these may give me but have warned my family of the signs to look out for and hope that i may be one of the lucky ones that doesn't experience them. Of course only time trial & error will tell! My belief is to start low dose & maintain for as long as possible without being told to increase because of a symptom giving you some bother but not un-managable. Of course i know that one day this will get worse and an increase will be necessary. I just hope i can tolerate all meds further down the line and keep going. I think our bodies will be the judge of what is suitable for us? so we can only try these tablets and see what happens.
No doubt i will be posting in the future on how i'm fairing with the new meds.
Watch this space!! good luck
Welcome to the forum.
I did not take any medication for the first 18 months of dx my decision. Thought I could manage. However I had to give in as my mobility had become terrible. Struggled to walk , had to be helped out of a chair. The pain in my right leg was awful. So the Consultant put me on Requip XL 4mg to start with, the week of taking these meds I did feel sick. But that has long gone. I was 48 when dx and now aged 55. Since taking the meds I have got my mobility back. I can now enjoy my beautiful grandson and even kick a football with him. Which I could not of done before. Had my tablets increased on my last visit to the Consultant. I would like very much not to rely on this medication but without it I would not be able to work, or function properly.
As long as you both are aware that what suits one patient does not always suit another. It can take time to find the right medication (a case of trial and error.)
With all the drugs we take you have to be aware of some of the terrible side effects. No doubt you will of read on this forum some of the people who have suffered at the hands of these DAs.
Good luck to you Audrey and to your husband .
Best wishes PB x
I understand the concerns you have about medication. 5 years down the line from diagnosis I find myself on quite a cocktail but I know I wouldn't be able to function without them.
What I would like to say to you is that you and your hubby may have to be prepared for some trial and error before finding the right medication to give the best results with the least side effects. Various combinations have resulted in nausea, excessive sleeping and dyskinesia, not all at once thank goodness, but by talking to the pd nurse and the consultant eventually the right course for me was found.
Parkinsons is such an odd disease you will find people react very differently to the same meds so just because you hear about bad reactions to a drug not everyone experiences the same thing.
Thank you all so much for your helpful replies - we both feel rather better informed now about starting medication! It is good to know that there are definite positives and not just negatives.
Hi Audrey, it is all a matter of the sufferer's quality of life. One day the symptoms will have become sufficiently bothersome to want treatment for it. The dyskinesias can be managed fairly well nowadays.
I find the pills absolutely necessary, would not be able to function without. Levodopa medication produce fewer side effects (if any) than DAs.
Something to bear in mind when deciding when to start meds is the growing amount of research showing that activity and exercise is incredibly helpful for PD, not just for the obvious health and energy benefits and keeping your muscles moving, but also because its supposed to increase BDNF in the brain. Regular exercise (at whatever level you can manage) may well be the best thing we can do for ourselves. So if a low dose of meds helps you maintain your mobility so that you can walk / run / cycle / swim, the benefits of the exercise may well outweigh any possible side effects or long term risk of dyskinesia.
That's the path I've chosen anyway!
Hi Audrey, as has been said, person to choose when they feel they want meds, when quality of life gets beyond what you can reasonably cope with. Meds may help the signals get through but they won't put strength in muscles that haven't worked for a while - so exercise is really important - practice walking, or arm swinging, or writing, whatever it is you have lost, if you do this then I beleive you have more control over your meds and how much you need. I'm on the dreaded DA's and luckily have had no side effects at all other than a fuzzy headed feeling on and off for first six weeks, and a bit of sleep issues which have stopped now. No OCD luckily. Don't be scared of meds, be savvy, go into it with lots of information and you'll be aware if it's not right for you.
I have had PD now for approximately 3 yrs. The last 18 months I have been on medication. For me personally these drugs have given me my life back. Before taking the medication I could not walk very well, I had a dreadful tremor which was more of a nuisance than anything else, I had restricted arm swing and "freezing" Now I walk everywhere I have taken up swimming recently I managed to do 22 lengths of our local swimming baths. I still have the tremor but it is less visible, no "freezing"or reduced arm swing. Above all the medication works for me but I have to say there is one drawback for me I always loved chocolate but now I am a chocoholic!
There is a bewlidering array of medication out there, that comes in all shapes and sizes including tablets,patches and pen injectors.
The key things to be borne in mind as far as I can tell, are that they almost all have side effects and they almost all have a limted effective time span - i.e. the PD will get used to the medication and it may become less effective in time, especially as the sympyoms progress.
Try to keep to the minimum doseage that gives enough relief to make life liveable, and talk to you neuro on a regular basis. I am not a Doctor but after nearly 10 years of taking all kinds of medication this has been my experience.
Don't be afraid of treating the illness with medication, just be careful as to how much of what is consumed, and do your research !
I would just like to second what 007 wrote, to try for an acceptable level of relief from symptoms without suffering needlessly or trying for complete eradication of symptoms.
Thank you all so much! I think we were put off by the fact that so much is made of the negative aspects of treatment that the positive aspects are a bit lost. My husband takes more exercise since his diagnosis - and we were very interested to hear how much this can help - and persuaded me to start Pilates with him so we have both benefitted! Pilates can be tailored to individual needs which he found particularly useful. It's good to be able to have the views of people with Parkinsons'a and their partners.
I have great deal of sympathy for your dilemma. I was put on Requip Starter Pack (DA) at initial diagnosis when I was too shocked to put up any resitance or ask the right questions. I insisted on coming off against doctor's advice as they made me feel drowsy and a bit sick and I have a general antipathy toward taking drugs anyway. I decided recently to go back on after presssure from my wife and sdvice of Parkinson nurse. I was also starting to have difficulties at work. I'm on 4mg a day set to rise to 6mg next week. The sickness has gone although I do still get drowsy in the evenings. My general mobility may have improved slightly and I think my depression and anxiety likewise. It's hard to tell at this early stage. My advice to your husband would be to hold off as long as you comfortably csn but be aware they do take some time to work when you eventually go on. Initial side effects seem to wear off though. At least they have with me. I wish you both all the best.
Start when you need to and not before. Azilect/selegiline are the first options, the Dopamine Agonists second and eventually dopamine. Just google and look at any relevant studies. But, you will have to start at some point as it progresses. Wendy
I was diagnosed just over two years ago and put on 12 mg of Requip immediately, then changed to RequipXL 14 mg quickly increased to 16 mg and now I'm back to 14 mg, but they have given me 300 mg of Madopar daily as well.
Other than ,feeling lightheaded occasionally, I have been lucky in that the only real side effect has been a problem with sleeping.
For the last week I have moved my time for taking the tablets from morning to evening, slowly, and I am now sleeping better with no apparent difference in anything else during the day - time will tell?
Chatting to the specialist and Parkinson's nurse does help I think?
I am having physio, which helps, but I must admit my problems with walking and balance are getting worse, but I will fight an increase in meds for as long as possible.
azilect might extend the effectiveness of your madopar without taking more l-dopa. Just a thought you might want to ask your neuro about next time.
hope you dont mind me suggesting this but I find MaoB inhibitors have a beneficial effect on l-dopa longevity.