Staying up later than usual: My hubby has a... - Cure Parkinson's

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Staying up later than usual

billyroca profile image
17 Replies

My hubby has a routine of about 6 madopars a day at 3 hourly intervals with a bit of Mucuna in the inbetween times.

He's tired enough to go to bed about 8.45/9pm, and takes a slow release Madopar...

His relationship with Madopar is getting a bit past it's best, i.e. he stiffens up alot when he wears off, and if he takes more than he needs then he either get dyskinesia or stiffens up even more.

He has his 60th birthday bash coming up and would like to be able to stay up till 11pm, or even later.

His adrenaline will pull him through some of it, but does anyone have any tips for the best possible outcome? He doesn't often drink caffeine, but I guess this is one option... or an extra Madopar.

Any suggestions gratefully received. (we have an appointment with Neurologist shortly, but not before the party!)

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billyroca
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17 Replies
MBAnderson profile image
MBAnderson

Split the difference. Send him to bed at 10, party on in his absence and tell him about it the next morning.

billyroca profile image
billyroca in reply toMBAnderson

Thank you for the reality check :)

chartist profile image
chartist

If you are in an area where medical marijuana is legal and he is agreeable, one, two, three or four hits of a sativa vape with medium level THC may help him pull it off, but he should test well before the party to find out how many hits to take. Test with one hit and wait 15 minutes to see how he responds. If response is zero or too small, take another hit and wait another 15 minutes to see how he reacts. Continue like this until he feels an adequate response and once he does that, then he will need to find out how long the effects last for him so he knows how to time its use for his party or other similar events. Sativa seems to have a modest invigorating effect while Indica will put him to sleep, so make sure it is sativa! For me it tends to make me think more, feel happier and more sociable and tends to delay sleep onset.

Art

billyroca profile image
billyroca in reply tochartist

Thank you. We've started using Indica and v. small legal amount of thc, which seems to help with pain relief especially.

I've just ordered some very good quality Sativa CBD from

theactivistcbd.co.uk/ website.

Being in the UK, we have to manage with what is available.

There is an amazing activist called Callie Blackwell, who nursed her young son with CBD which helped his bone marrow to take (he was about to die from Cancer)

linktr.ee/callieblackwell

laglag profile image
laglag

I wouldn't give him another Madopar. My thinking is less is more. I would talk to his neurologist first. 🥊

Have fun!!

jeeves19 profile image
jeeves19 in reply tolaglag

so how do you reach that point Lisa?!

laglag profile image
laglag in reply tojeeves19

I guess you're talking to me? Last year my neurologist recommended I take 1.5 C/L per day due to my on times being shorter. I ended up shaking even more so I started slowly eliminating the 1/2's and the tremors were better, As you know, there's a fine line but I feel better with taking the one rather than 1.5 tabs.

🥊 Debbie

jeeves19 profile image
jeeves19 in reply tolaglag

sorry Debbie, got you mixed up there 🤔😊

LAJ12345 profile image
LAJ12345

if it’s a once off staying up late can you just do a slow time shift like daylight saving to make his whole day shift later during the week before? Or does he have time based commitments like work?

billyroca profile image
billyroca in reply toLAJ12345

He's going to try sleeping more in the morning... that does help sometimes...

Buckholt profile image
Buckholt

Am I missing something, but why not start the party earlier? We now choose to meet friends and go out at around 5 or 6pm rather than 7 or 8 as we might previously. Most people seem fine to make allowances for me

billyroca profile image
billyroca in reply toBuckholt

Thank you... Ahem... did try and suggest this... think that's how it'll work out. Thanks so much

park_bear profile image
park_bear

" if he takes more than he needs then he either get dyskinesia or stiffens up even more."

Too much levodopa medication is as bad as too little. Peak dose dystonia is a thing, a thing best avoided by taking only what is needed.

Hikoi profile image
Hikoi

Has he tried Madopar dispersible? It is only 50/12.5. I find it very useful when I go off. It’s a quick fix and I dont notice any side effects. Perhaps he could take some through the evening, if he does want to celebrate with friends.

billyroca profile image
billyroca

Thank you. He has indeed tried it, but the wear off can manifest with extreme stiffness, so not sure about this, but that might work if he's a bit adrenalised... for one night only, it's probably worth a try!

PDMAMA profile image
PDMAMA

So I am assuming madopar is another form of C/L? What is macuna? Is it the British form of a PD med? I've heard people mention it but didn't know what it was for sure.

HekateMoon profile image
HekateMoon in reply toPDMAMA

Mucuna pruriens, macuna, kapikachu, velvet bean. Is a bean from india and africa that contains levodopa. Its sold as a supplement.

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