Hi Musketeers
Some news of lucky Keith
He’s just got out of hospital again after a car ran into the back of his bike near Norwich.

He has 4 fractures to his spine.
4 broken ribs, broken collar bone and shoulder blade and nasty soft tissue injuries to his left hand side and the strap of his helmet has damaged his voice box.
But apart from that he is fine.
Tommy :pill: :pill: :pill:

Hello all, it’s taken me quite a while to read over 4000 posts in this section. You all seem so supportive of one another and it’s been greasy to read your stories, trials and tribulations.

I am getting 2-3 hours of crazy disturbed sleep per night. Have taken CBD oil but am unsure of the amount (currently 3-4 drops under tongue before bed) but it’s not having as good an affect as it seems it has for some of you. I’m taking levodopa and ropinerol at 6.30pm. Could/should I try meds’ at different times in anyone’s opinion? Does this make a difference? I generally go to bed (feeling very tired) around 10pm but wake abruptly around midnight or 1.00am and that’s about it for me for the night. As you can imagine after 7 months of this I am going slightly insane and it’s affecting family life/ job etc. Any advice from you guys is very much welcome. I feel at the end of my tether.

Melatonin is one answer. Only your consultant can prescribe.
Sorry this is short but shall talk later.

Keith am sending you hugs.

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Master of understatement there Tommy. Poor old Keith, probably time to hang up the crash helmet I would think, I’ll have to message him.

Hi ‘Nix’, my neurologist advised against taking these two drugs at the same time, I currently take 3 12.5mg/50mg Sinemet - 1 at 8am, 1 at 2pm & 1 at 8pm, 1mg of Rasagiline at 10am & 4mg of Ropinirole at midday. This seems to work ok for me. I definitely don’t sleep as much as I used to but as I’m lucky enough to be retired I’ll often have an afternoon nap.

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Hi @Nixnocks
Welcome to the forum. I have read some of your posts on other threads and feel for you as I know only too well what sleep deprivation does.
Unfortunately for me the cbd oil effects was temporary and I now average 12 hours sleep a week.
Although I have not tried melatonin as my neurologist simply dismissed the suggestion in favour of antidepressants.
However I was referred to a neuropsychologist who included me in an 8 week mindfulness course of which I was extremely sceptical.
During this course I was surprised to notice that many patients fell asleep during some of the many different ways of meditation (not the objective) merely a welcome side effect.
I am now completely antidepressant free and coping much better however unlike you I don’t work but I’m a carer for my wife which is a task in itself.
I therefore would encourage you to ask your neurologist if there are any such courses available in your area.
There are many books and apps on this subject however I think it would be almost impossible to teach yourself and requires a dedicated professional for this role.
As you know not one solution fits all so please explore and hopefully you will stumble (no pun intended) on the solution for you.
Best of luck to you
Tommy :pill: :pill: :pill:

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Hey Roy,

Appreciate the reply. The drugs you are taking are these alternatives you think I could ask my neurologist to prescribe instead of the ropinerol and levodopa mix? I’ll call my PD nurse and ask.

Hey Tommy,

Thanks for the highly detailed reply. My counsellor ( who I no longer see) did recommend I ask my GP to be referred to a sleep clinic and last time I spoke a couple of weeks ago they said they would look into it for me. A neuropsychologist wasn’t something i have ever heard of so thanks to your suggestion I’ll look into that too. I must admit that I thought this was something I could fix easily but it’s looking much more complicated than I thought. I’m currently on my hols so I have more time to contemplate things and work up solutions.

Hi Tommy

I have just text Keith. So thanks fot letting us know keep us informed of what’s happening. Hoping that life is good for you and Sue. X x x

Babs x

Hi Babswood
I’m sure he will be glad to hear from you.
Me & Sue are ok, just taking things as they come.
Got an appointment today to do my circus camera swallowing act on the 3rd September AGAIN.
If anyone wants advice on camera swallowing I am just the chap to ask!!!
Regards to Sir Phil of the NOD.
TOMMY :pill: :pill: :pill:

Hi Tommy, babs, Roy and welcome nixnocks sorry to hear about Keith I think you have a valid idea Roy I found cbd oil works better for me if I use it for3/4 nights and then leave it for same period I use 2.5% strength and was told I could go up to 9 drops hope this helps oops sorry Mrs T new meds are kicking in not with it still not feeling good but wanted to reply take care all

It certainly doesn’t hurt to ask about alternatives. The ropinirole I take is a slow release type. I’ve attached a picture of the brands I take, for the carbidopa/levodopa my neurologist insisted on sinemet, I did accept a generic substitute from the pharmacist once & they really didn’t work as well.

Apologies, remiss of me, greetings & felicitations to one & all.

Hope everyone’s coping as well as can be, nice to see you back Mrs T & good to have a new contributor, cheers Nixnocks :wink:

Oh I didn’t realise that substitutes could have different affects? All the ones I get from my local pharmacy are always switched from the original brand. Can I insist on the correct ones?

Thank you all for your welcomes!

Hi there musketeers
Just a little update on our fellow musketeer Kieth.
He’s had his results from a second datscan on the 4th July.
And it turns out that his fnd diagnosis really was just that.
(f##***g no diagnosis).
This time he has a definitive diagnosis of parkinsons after all.
Tommy :pill: :pill: :pill:

Meds can really be a nightmare. Sleep a real problem, master of understatement. I take a mixture of ropinirole and madopar.
Because of my awful nightmares I was prescribed melatonin. One - three tablets self dosing. Take 2 now. 3 were zombie-inducing, 1 no effect. Much is about trial and error all is so variable. I had to stop teaching 16 years ago. Have no idea how you do that commute Nixnocks, sounds dangerous, be careful.
Hugs to all. Especially Keith.

If that’s what your neurologist has advised, I got my GP to get it changed on my repeat prescription list.

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hi there. anyone about?


Good afternoon one & all, hope everyone’s enjoying their day & this amazing August (or is that October?) weather. Having a ‘crumby’ day, nothing specific just feel a bit low, got things to do but just can’t be arsed (that might just be because I’m a lazy bugger though). Maybe chocolate digestives & another coffee might help? You can but try…