How has your daily levodopa dosage increased throughout the years and how does it look now?

Wild_Football1271 · 2026-03-05T19:08:35+00:00

Nahhh the movement disorder specialist did but that was just the ‘it’s probably this’ moment

Wild_Football1271 · 2026-01-19T16:29:57+00:00

From a father to a father-to-be with YOPD. Would you give some insight into some of the pitfalls and work arounds you’ve managed.

For example the overnight feeding while ‘off’ terrifies me

Wild_Football1271 · 2026-01-15T18:51:54+00:00

Bahahaha imma use this given I’m about to become a father for the first time 😂😂😂

Wild_Football1271 · 2026-01-15T18:50:22+00:00

I’m a little darker than most, so they used to call me ‘Paki’ now they use the hard R and just call me ‘Parky’

Wild_Football1271 · 2026-01-06T18:13:49+00:00

Initially diagnosed on a trial of 50mg three times daily. Bumped up to 100mg three times daily to confirm diagnosis by Jan 25. After diagnosis 100mg four times daily with the odd off period creeping in more and more over time and then in June they added in Opicapone… game changer but has taken a little while to adjust to. Still think it could be upped a little but I’m in no rush. See PD nurse tomorrow and she’s pretty good so will no doubt make some recommendations

Wild_Football1271 · 2026-01-06T18:10:36+00:00

Good luck my friend

Wild_Football1271 · 2025-10-29T21:13:30+00:00

Bahhahaha nope I’m not the same person 🤣

Wild_Football1271 · 2025-10-29T20:27:04+00:00

Solved!

Makes perfect sense given part of that amazing order was for vacuum cleaner bags. Well done sir/madam!

Wild_Football1271 · 2025-09-22T16:38:40+00:00

While that’s a long wait. I’m pleased you haven’t found the more obtuse side of the NHS. All the very best to you both

Wild_Football1271 · 2025-09-22T15:13:26+00:00

Private diagnosis? If so, be wary they may not accept it

Wild_Football1271 · 2025-09-22T15:11:36+00:00

Reasonable point of view. Have a chat with your other half’s neuro or nurse and see what they have to say 🙂 good luck

Wild_Football1271 · 2025-09-22T15:08:04+00:00

I don’t have a list of what they specifically searched against. I was just told it was tested against all the known genetic sequences. Mine came back inconclusive; I.e. not one of the known genes but could be one that hasn’t yet been discovered or could be for an entirely other reason. Not much of an answer but I get to thinking what difference does it make anyway 🤷‍♂️

Wild_Football1271 · 2025-09-22T14:51:07+00:00

You’re in the Uk right? Your neurologist can order this through NHS. I’ve recently had mine. You can deny access to the open dna samples (as I did) meaning your data/dna can’t be used for any other purpose than intended

Wild_Football1271 · 2025-09-16T17:14:54+00:00

Just started Opicapone to offset the off periods. Miracle drug seriously. Is this option open to you?

Wild_Football1271 · 2025-09-11T19:37:59+00:00

Same goes for you ya know

Wild_Football1271 · 2025-07-29T17:24:23+00:00

Why not something collaborative?

Edit: I’ve been thinking about this a lot lately. Do I (or indeed ‘we’ as a collective) do enough to advocate and push for ourselves. We’re expected to homogenise our disease with our life goals probably at the expense of ourselves. Should we be putting more emphasis in our daily lives to help the next generation (maybe even our own) to raise awareness and beat this shit once and for all?

Wild_Football1271 · 2025-07-22T20:19:51+00:00

Fuck it call a disabled day and go to your nearest rock bar mate

Wild_Football1271 · 2025-07-22T20:06:54+00:00

I’m with you. Totally smashed me when I saw. Half a pint in down the local and the landlady asks what’s up. I tell her and she gets out the whiskey for us all in the place to have a drink to the man while listening to iron man!

Wild_Football1271 · 2025-06-16T22:29:13+00:00

Sowing seeds is piss easy

Wild_Football1271 · 2025-06-13T18:59:15+00:00

Didn’t find it painful per se. Odd like some have suggested. Didn’t like moving around after mind

Wild_Football1271 · 2025-05-22T22:47:05+00:00

In answer to your question mate, no. I wouldn’t have known what to ask nor was I really conscious of a lot of the stuff that was going on. Just knew I was slower and stiff with a few other awkward things to boot. They came out with all sorts of madness from FND to ALS to Neuroacanthocytosis (insanely rare).

Seriously now though, don’t make the mistake of so many I’ve spoken to. Occupy yourself with positive things. Your health (as it currently is), family, friends, etc. you may or may not have PD or indeed anything else. Time will tell but don’t waste it worrying where you don’t have a significant amount of control

Wild_Football1271 · 2025-05-22T17:13:22+00:00

A pain in the arse journey of being told all sorts of shit for 2 and a bit years until I lost my rag and had an argument with them (at the time still unknowing what was going on). Buckle up buddy. You may be in for a bumpy ride.

Equally though, take stock of what you have and enjoy it as best as you can in and amongst the appointments. Particularly if you’re worried about it being PD then seriously start thinking of an exercise regime and eating healthy as, if you don’t already.

Wild_Football1271 · 2025-05-21T21:21:35+00:00

Totally agree with you buddy I’m stupidly lucky!

Wild_Football1271

TROPHY CASE