I don't want bad days and good days. I want good days and good days...

[Grumpy77]

Is that too much to ask for?

Currently I have "normal bad" days and "extreme bad days” with zero "good days". So with this deterioration to no good days, my "normal bad" are now my "good days" and my "extreme bad" days are now my "bad days"

[Skydome]

Could you describe a typical ‘good day’ and ‘extreme bad day’ for you?

[Grumpy77 in reply to Skydome]

normal bad day-> good day: can't do much bcos of aggressive tremors overrunning me. so much that even putting toothpaste on a brush has become a difficult task.

extreme bad day-> normal bad day: in addition to the above, feeling so awful that I wanna just lie down all day

[Skydome in reply to Grumpy77]

Hi Grumpy77, thank you for your reply. I am sorry that you are going through a particularly difficult time. Is your neurologist aware that your symptoms are troubling you to this extent when prescribing your PD medication? I hope one day soon you will hear yourself say: today was a good day, a good good day.

[Grumpy77 in reply to Skydome]

I see my neuro once or twice a year and even then all they do is prescribe more Levodopa. It's as stupid as that! Sorry at this stage, can't help being grumpy

[chartist in reply to Grumpy77]

Grumpy,

Have you considered giving Citicoline a try to try and alleviate tremor and other symptoms as well as potentially reduce your levodopa dose?

pubmed.ncbi.nlm.nih.gov/332....

Here is a relevant quote :

' Despite the varied outcome tools, this review found that patients with PD who were taking citicoline had significant improvement in rigidity, akinesia, tremor, handwriting, and speech. Citicoline allowed effective reduction of levodopa by up to 50%. Significant improvement in cognitive status evaluation was also noted with citicoline adjunctive therapy. '

Seems like it is worth a try as a means to improve your quality of life.

Art

[Grumpy77 in reply to chartist]

Thank you so much Art as ever with your invaluable advice.

Aftter searching for citicoline (choline) I got confused. I know Price disparity between brands is very common but the gap of £12 lowest to £90 most expensive (60 capsules, 500 mg) was confusing

I tried to research to see if the reason for the price difference was branding and business model OR due to sourced ingredients being more superior and optimal, but I couldn't find an answer to that.

What do you think?

[chartist in reply to Grumpy77]

Citicoline is considered a better form than choline for this purpose and is less toxic :

ncbi.nlm.nih.gov/pmc/articl...

Here is a relevant quote :

' Citicoline is considered a dietetic source of choline and cytidine. Cytidine does not have any health claim authorized either, but there are claims authorized for choline, concerning its contribution to normal lipid metabolism, maintenance of normal liver function, and normal homocysteine metabolism. The applicability of these claims to citicoline is discussed, leading to the conclusion that the issue is not a trivial one. Intriguing data, showing that on a molar mass basis citicoline is significantly less toxic than choline, are also analyzed. It is hypothesized that, compared to choline moiety in other dietary sources such as phosphatidylcholine, choline in citicoline is less prone to conversion to trimethylamine (TMA) and its putative atherogenic N-oxide (TMAO). Epidemiological studies have suggested that choline supplementation may improve cognitive performance, and for this application citicoline may be safer and more efficacious. '

' Altogether, whereas the jury may still be out on the issue whether, or to what extent, citicoline taken orally is metabolized to TMA and TMAO, there are reasons to believe that procognitive effects of citicoline supplementation are superior over those of choline or phosphatidylcholine. '

Art

[Grumpy77 in reply to chartist]

Upon review, I can see that I've made a mistake. The one that is £90 is actually another supplement that contains citicoline. Sorry

[Jmellano]

I hear you. It has been so long since I have had a good day , I forgot what it is like. Most of my symptoms are non motor,, although bradykinesia is getting worse, fatigue, apathy and depresssion are u bearable,..if I don’t wcercicse in the morning, it doesn’t get done. If I force myself to xercise , I usually spend the rest of the day in bed I am so fatigued :-(.

[LindaP50 in reply to Jmellano]

For apathy and depression, along with some other positive benefits such as reducing face masking and possible voice improvement - have you tried Mannitol Balance? My husband had success within one week. Read info on the website. Here's the link.

mannitolbalance.com/

[Jmellano in reply to LindaP50]

thnx lindap50”. I tried mannitol for almost 6 montths, didn’t do anything for me

[LindaP50 in reply to Jmellano]

Ok. Glad you tried it. Keep the faith!

[ddmagee1]

Same here Grumpy77! Even a partial good day, is a bonus! Stay strong!

[Annie81963]

I agree with you.