Hello everyone, I’m trying to find an additional add-on to my husband’s daily meds regime which consists of one and a half Sinemet X 3 times daily and Ropinerole XL 8mg once daily. His PD is tremor dominant but he has also started to develop freezing and his meds don’t seem to be lasting as long. He takes his last Sinemet dose at 5pm then nothing til 7am in morning. I was wondering if anyone takes Amantadine Extended Release at bedtime? If so does it help? Other drugs I’ve been looking at are Rytary, Safinamide and Entacapone. I’m due a call with our PD nurse and will obviously be asking her advice, but just wondered if anyone has anything to add from personal experience. Our consultant seems to be of the opinion ‘less is more’ and I am aware that taking more of certain drugs involves the risk of dyskinesia. As he has enough stress to deal with re his tremor, that’s something we’d like to avoid or decrease the risk of if at all possible. He’s 6 years down the line from diagnosis but has probably had PD for longer. Thank you.
hello jean 1,
first of all you need to make sure that the meds are getting to the intended area. is he taking them with or just after food . this opens the stomach and allows the drugs to be digested, make sure that he is not constipated, as this will affect digestion, make sure he drinks enough water as this can cause constipation. if he manage a little exercise will help. you could ask his consultant about using Azilect which tries to hang onto levdopa in the bloodstream and could give more time on. he could try taking the requip xl at bedtime. another drug to ask about is opicapone.
Hello Roberto, thanks for reply. I try my best to make sure he take his meds an hour before a meal. I understand the link between constipation and absorption of meds but he does have a real problem with it. He has movicol midday and bisacodyl at night, some days with more success than others. Re fluids, once again I try to make sure he drinks at least 2litres throughout the day as he’s also prone to UTIs. It’s all so exhausting keeping on top of it all. Such a complicated and wretched disease. I’ll mention the other meds you suggest to our PD nurse. Will also ask if he’s taking his Ropinerole XL at the most optimum time for best effect. Thanks and take care too.
Oh I forgot to mention I take laxido powders, but if he can do some twisting exercise it really does help. Also i remember when my wife was ill and constipated she used a tens machine on a point between her forefinger and thumb, and it worked. i also sometime take a 50/12.5mg madopar dispersible with my first dose to give me a kickstart… i have been diagnosed for 15 years and i passed my advanced driving test two weeks ago with ROSPA. so things can still be achieved
Hi Roberto, what are twisting exercises as I’ve never heard of them? I’m glad you are still doing so well after 15 years and to pass an advanced driving test is some achievement! My husband stopped driving three years ago, it was only three years since diagnosis and due to his tremor and also his reactions were becoming too slow so it just wasn’t safe for him to be driving anymore. PD has taken so many of life’s pleasures away from him. We had hoped for a few more good years ahead but it doesn’t seem likely. But I’m always glad to hear of others doing well. Best wishes Jean
Hi Jean 1,
Maybe suggest Half Sinemet.It’s something that gets me through to the morning… most nights!
every one is different and i have every sympathy with those who cannot fight it as it is bloody soul destroying. but you have to try and fight it, by doing exercise at every opportunity. do a bit of gardening anything to keep your brain alive, keep moving. if you suffer night cramps then buy some magnesium oil and magnesium tablets , they work.
Hi Roberto and Starsky, and thank you for your advice and tips. Will look at magnesium and ask nurse about this and the night time extra half of Sinemet. He’s actually just had his Sinemet increased to two tablets X 3 times daily. Not sure if an extra half will increase his risk of dyskinesia with his dosage only recently increased though? He has more than enough to contend with in his tremor without that. He was found to be borderline B12 deficient, so he’s just started this in prescribed tablet form once daily. Really hope this helps with his constant fatigue and slowness. Fingers crossed.
let us know how he gets on, twisting is just turning your body while keeping our legs still. just like the dance but not as vigorous…