Opicapone

[Purplestar2]

Hello

I posted previously about Mum having a wearing off period between her levodopa doses and I am no minded that she may need her blood pressure tablets upped. She also has another UTI which will obviously be impacting things. She seems too weak to pick her arms up to feed herself and give herself a drink but she is able to happily munch down her food if I spoon feed her and also if I help her hold a cup to drink (has anyone come across this as a symptom? I thought the function to loose from MSA would be the brain not telling the body what to do, rather than weakness? She has osteoporosis and low blood pressure - it’s all very complicated trying to figure this all out isn’t it!).

Anyway, during Mums period of fixating that the Parkinson’s levodopa medication has some sort of super power and is the answer to everything that isn’t working with her, she’s been calling the Parkinson’s nurses trying to increase the levodopa. They are hesitant due to her blood pressure. They have now suggested taking Opicapone 50mg but I’ve read bad things about this and she’s previously had another tablet at night increasing something that didn’t agree with her and made her light headed, so I just don’t think this is the solution but I wanted to know other peoples experiences.

We have been able to get an emergency appointment with the consultant to discuss this next week so I just want to really understand any side effect or options. I have seen Entacapone and Amantadine mentioned but don’t know much about them so will try and discuss these too.

[Yanno]

Hello,

Fatigue was generally an issue with Jackie. The consultant prescribed Amantadine to try and help. We were never certain it helped that much however we were told the good thing with Amantadine is one can take it and stop/start without an issue.

In the end, as we were a bit of a pair of night birds and liked to stay up late, we found Jax having a couple of hours rest in the afternoon was very beneficial. Frankly it also gave me, as her sole carer, a chance to catch up with things.

Take care, Ian

[Purplestar2 in reply to Yanno]

I hear you! I have been trying to get her to have an organised afternoon nap but she can’t seem to organise herself. It doesn’t help that the caters just come in whenever, her morning call is at 10.30am and sometimes they don’t come until 11.30am! But she gets up at 7am for her first medication. The other care company came at set times in the day and first call at 8am. This new care company will likely give me a heart attack, but there doesn’t seem to be an alternative. There should be a separate care company for people with complex disabilities with experienced staff who work off set times (as best they can). They all just want the ‘easy’ people to care for, where they don’t do much. It’s such a nightmare.