I have recently been diagnosed with “probable” Parkinsons and realise that many minor symptoms have been present for some years. The most annoying is periodic trembling of my left leg when sitting or laying down. The consultant I finally got to see has prescribed Madapor in gradually increasing doses but I haven’t taken these yet as the possible side effects sound far worse than the relatively minor symptoms I currently experience from the disease.
I don’t know whether to risk this drug or wait and see how things develop. I don’t want to feel worse as I have a busy life! I am retired but have a supportive partner, a school age child and four classic cars to exercise!
Hello Elfman, my husband has been probable since 2019 we saw MDS 6 months ago who also prescribed sinemet 25/100 my husband is reluctant to take them as doesnt feel ready being 53 and he doesnt feel too bad although tremor left side , slowness and fatigue but manages ok. We saw MDS today and he feels that my husband should be on meds as he said you need quality of life now. Whats the point wasting time, he had a guy wait for a few years and take meds at 70 only then to pass away at 75 so he only had 5yrs on meds and suffered beforehand. My husband is scared of dyskinsea amd becoming worse if he takes them, but MDS advised its progressive so you may need to up the meds in time but that is just because its progressed. Dysiinse he says happens later on sometimes maybe 10 + yrs time and thats a possibility . My husband still is not keen, confused and not sure which way ro turn but the MDS has given him 12.5mg madapor 3 x a day so its a low dose. My hubby walks 5 miles a day, always been active. Its always a gamble what to do for the best?
Hello Elfman
Unfortunately there is no simple answer to the question of whether or not to start meds, a question that is frequently and understandably asked by many who are diagnosed. The side effects sound awful and can be, but most medications have side effects that when you read them could quite easily put you off. Poppet made some valid points. As a general rule of thumb I would say first remember a list of stated side effects is just that, a list. It doesn’t mean you will necessarily get any or all of them and even if you do, may not be severe. Second for most people it’s about quality of life, which is very subjective, but if you feel you are managing well enough for what you want to do then it is probably worth delaying. If however you feel your quality of life is being compromised then that would be the time to start meds.
It is also worth bearing in mind that not all drugs work for everyone, and changing the brand, dose or time cycle for eg can make a difference and it’s not always right first time.
Sorry I can’t be more concrete than that but it is the nature of the beast that is Parkinson’s.
I wish you well in whatever you decide.
Tot
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Hi @elfman, All I can say to you is to try the drug, if it doesn’t work for you then you’ve got some ammunition to go back to your Neurologist with. You don’t know until you try, you can still exercise your four classic cars as Madopar won’t hinder your performance in that quarter, you must not let the side effects of any drug blind your judgement.
Les
Hi Poppet
Thanks for taking the time to write. I am reluctant to take drugs as I am not suffering more than annoyance at present, but I will have to decide. My quality of life is only suffering because of the worry all this has induced!
Hi Tot
Thanks for taking the trouble to reply. I do realise that all drugs have a leaflet that describes worrying side effects, but this list is the scariest yet. I will just have to decide soon.
Hi Les
Thanks for responding. If I find similar reassurance from others I guess I will give this a go but do I really want drugs for what is currently a mere annoyance?
Hello Elfman, if your symptoms are to use your words only ‘an annoyance’ and you can live with this and still do all you need or want to do, personally I would choose to delay for a while and see how I go. In my case however, I went onto meds from diagnosis, that was over 12 years ago and they (and I believe my positive attitude) has kept me in pretty good shape, with no particular difficulties caused by side effects of the meds. The first couple of weeks were hard going because they are strong tablets and your body has to adjust, but I was also given anti nausea tablets which helped and I got used to them in a very short time. The medical profession have differing views on the optimum time to start meds and you must be comfortable with your decision. You say the list is scary but then a lot about Parkinson’s is scary if you think about it - in simple terms it changes your plans, hopes and dreams into an unknown future except for the fact that at the moment there is no cure with the only certainty being there will be deterioration over time. That’s a lot to get your head around and we all have to find ways to do that since it’s not something that is going to go away. I’m not alone in concluding that I only worry about the future and plan enough to make things run smoothly otherwise I get on living my life today as best I can. Maybe I will have more complicated problems later for being on meds so long but that is a risk I am prepared to take because meds have given me a quality of life I couldn’t have had without them. You may wish to delay because you said in your initial post that your diagnosis was ‘probable’ Parkinson’s so that implies it may not be. If it is however, you can have a good life with Parkinson’s, it may not be the one you envisaged but it is still your life and for me that means making it the best I can. You will find living with Parkinson’s demands many decisions, none of them easy. Meds is a classic tough decision. There’s nothing wrong with delaying starting meds if that’s right for you and only you will know that. But don’t put a scary list of side effects which may not even happen, prevent you from enjoying your life now. Today doesn’t come again, it’s a once only. Be honest with yourself and trust your judgement and you’ll not go far wrong.
Tot
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