Good afternoon, this post is for those of you taking Sinemet as your main PD med. My husband has been on this medication since he was diagnosed in 2016. He’s now taking 25/250 mgs every four hours.
We have an appointment with his neurologist in mid August and I’ll be addressing this very subject with him with the aim of asking if he’s ready for an increase or an additional dosage time. He also takes 100mg of Safinamide once a day in the morning.
In the meantime I thought I’d ask if anyone taking this med has had to tweak it quite a bit, i.e. timings when going out for a meal in the daytime etc.
We’ve just been out for lunch with some friends. He’d taken his last tablet at 11 and was due the next at 3pm. He managed the main meal ok which was served around 2, but it became obvious he was wearing off his meds as he was finishing the meal, so I gave him his Sinemet a bit earlier (about 30mins) I know it’s not ideal to take Sinemet with food but there are times when it’s just not possible to adhere to strict timings. When dessert was brought he could barely put the spoon in his mouth and was shaking so much he had to abandon most of the dessert as the meds take quite a while to kick in. It causes great distress and embarrassment for him and me when in public and I’ve now decided to just not bother going out for a meal any later than 12noon as at this point he’s on top form as it’s only an hour after his meds and he eats without any issues.
It really spoils going out as this always happens if we eat later than usual. He also often can’t get up from the chair without me moving the table away from him, otherwise he’d never get up. It didn’t help today as the chair was on carpet. Just hope the neurologist can advise on whether he needs more Sinemet or another med adding. I’m aware that increasing the Sinemet can lead to the very unwanted side effect of dyskinesia though. He has quite enough to contend to with his tremor without that as well. Such a cruel and exhausting disease to deal with on a daily basis. My heart goes out to all who live with it. Best wishes, Jean
Hi Jean1, thank you for sharing and we’re so sorry to hear about your husband’s experience. It sounds like this has been a challenging time for you both. Please know that we’re here for you, and so are others in this community.
It’s good to hear that you have an appointment with the neurologist to discuss your husband’s medication. If you’d like any help navigating those discussions, please do give our helpline a call. Our trained advisers can offer support and advice, and you can ask to speak to one of our Parkinson’s nurses. It’s free and confidential: 0808 800 0303.
We hope that the appointment goes well and that you and your husband are able to access the support you deserve.
Take care,
The Parkinson’s UK Moderation Team
Thank you Corrine. I was thinking of contacting the helpline while waiting to see the neurologist. So thanks for the reminder and advice.
Kind regards, Jean.
Good morning Jean … I am 71 & was diagnosed in June 2023. Although I have had the symptoms for a number of years, just undiagnosed.
I am on Sinemet. I did take 2 pills at 7am, 2 pills at 1pm & 2 pills at 7pm. Having had a lot of sleep related problems I have stopped taking the 7pm pills. This works for me.
My neurologist was happy with the changes I have made.
I no longer eat out with friends as I shake when using a fork & it takes ages to finish eating my meal. I find this extremely embarrassing. I have stopped eating half way though my meal despite being hungry as everyone else has finished.
I would certainly consider tweaking the times he takes his meds & keep a written note of what you do & what helps.
Steve2
Hello Steve and thanks for your reply.
Sorry to hear that you are no longer going out for meals as your tremor causes you to feel embarassed.
I was telling one of my son’s about our meal experience yesterday and he said that it’s other people’s problem if they make you feel uncomfortable or embarrassed. I explained that if course we’ll carry on but I’m now going to be more careful about timings that suits him and his medication
Pleased to say that today we’ve been out for a very pleasant lunch in a tea room we both enjoy visying.
Started our lunch about 1pm with no problems (re shaking) then he enjoyed a lovely piece of cake and a coffee. All with calm hands. What a difference to yesterday!
He was then ready for his 3pm tablet. So whatever the consultant has to say when we see him in a fortnight, we’ll go out for meals only when he’s fully ‘switched on’ with his Simemet.
Whoops sorry, pressed send too soon.!
So it is obvious that if he’s fully medicated he can still enjoy, not only meals out, but all the other activities he does. He attends a gym, walking group and exercise classes weekly. Luckily most of these are at optimum times for his meds. He’s found Sinemet to be a very good medication for him so I’m hoping it will continue to work well for a few more years yet. Fingers crossed! I do hope you’ll be able to overcome your problem with eating out. I’m sure your friends wouldn’t want you to feel in any way embarrassed. Wishing you well. Jean
I feel for everyone who has Parkinson’s but I have been unable to go for a meal for almost 2 years because of my inability to walk properly. i totter round my own home with my rollator or holding onto door frames or furniture. This is seriously disabling although my consultant seems to believe it is fairly normal, He advised increasing my dose of co-beneldopa which I did but it made no difference so i am currently seeing what happens as i reduce my dosage.
As for being embarrassed, although understandable, that should not be allowed to be a consideration. Other people need to see the effects of PD. My neighbours frequently see me tottering down the drive to but the recycling out.
Alan K
Hello Quercus, I’m very sorry to hear you are having such difficulty with your mobility.
Parkinson’s is such a cruel and complex disease, and you’re quite right that those who suffer from it should never have to feel embarrassed by the symptoms in whichever way these present in public.
There certainly needs to be far more awareness of Parkinson’s. But I’m afraid many people still believe it only causes you to be a bit shaky and slow.
As we know, everybody afflicted with PD will experience differing symptoms from time to time and some will be more difficult to overcome than others which can then induce greater anxiety, especially in social situations.
In my husband’s case, I’m just hoping that his neurologist will be able to review his medication regime so he can get the most benefit from his meds to enable us to carry on enjoying our lives as best we can and for as long as we can…
I do hope your mobility problems improve once you experiment with reducing the dosage of your current medication. Sending our best wishes. Jean
Thank you very much, Jean, for your lovely reply. I really do hope that your husband can find the right medication and that you can both enjoy life together.
Very best wishes
Alan K
I really hope things will improve for you soon Quercus, and you regain some mobility that will in turn help you to enjoy more of a social life.
I am quite surprised that your consultant believes that your poor mobility problems are ‘normal’ with PD and he hasn’t tried to rectify this other than increasing your co-benaldopa.
Perhaps you could make another appointment with him or a PD nurse if the reduction of your meds doesn’t help. Please let me know how things go for you. Take care. Jean
Have a look on YouTube for videos on photobimodulation, keto diet, or intermittent fasting, and ivermectin. I believe these may help pd. More recently anecdotal evidence that ivermectin can help pd patients, one woman who hasn’t played golf for years went back to playing. After taking ivermectin.
I started taking ivermectin a couple of weeks ago and saw immediate improvement in my sleep? Early days yet my sleep score went from 60 % to 88% according to my smart watch .