C/L and non motor symptoms

[Jmellano]

If most of my pd symptoms are non motor (NMS), such as fatigue, anxiety, apathy,lack of motivation, cognition,drooling ,urinary incontinence, and c/l doesnt help NMS, then why doesnt all the rytary(c/l) i take help my bradykinesia and difficulty rolling around in bed which are motor symptoms?

[park_bear]

For Parkinson's fatigue I find that a 100 mg capsule of caffeine is helpful.

[Jmellano in reply to park_bear]

the thought of taking another pill freaks me out. how long before u saw results?

[park_bear in reply to Jmellano]

It takes an hour or two to work.

[Jmellano]

i can hadle that

[gaga1958 in reply to Jmellano]

You could also drink coffee. There's 95-200mg of caffeine in a 8oz cup of coffee, depending on the type of bean. I get really sleepy from C/L. I think there's a post that mentions which type of C/L has that effect, but I forgot to write it down.

[Kenekekiane in reply to gaga1958]

Does anyone notice caffeine increases tremor? Just curious.

[drumhead in reply to Kenekekiane]

Absolutely does for me!

[Jmellano]

how about nutricost brand, 100mg.?

[park_bear in reply to Jmellano]

As it happens, that is what I am taking

[Jmellano in reply to park_bear]

Ordering today

[Fireside15]

That's an excellent question. I don't really have an answer, but a lot of the non motor symptoms you listed are commonly helped by high dose thiamine (for those who find a successful dose for themselves). Fatigue and apathy are pretty rare for me now -- they made themselves scarce not long after I started high dose thiamine.

[Jmellano in reply to Fireside15]

Hidosethiamine did not work for me, seems like we all suffer from the advances of this disease. It is like the sword of damocles, hanging over our heads; what function will we lose or will get worse next… and when is ‘next’

[gaga1958]

Also have you looked into the "supplement" NOT the drug, called Lithium. I believe there's a thread on HU about it and there's a book on it for PD

[quantumpark]

Same here. I do not longer taken l+c. Underlying was huge deficiënties of thiamine, taking benfothiamine. Good!

[YoungPD-48]

Good morning Jmellano, what you are going through is somewhat we all are having, and everyone is trying to manage on their own way, if you wish to follow my simple and effective way then

Start drinking warm water and avoid any cold drinks or food, this will help you with clearing your tummy, once your tummy is cleared you will feel lighter and energetic,

Secondly, start doing any form of meditation, it will help you with controlling your emotions and anxiety level

Third- forgive and forget, live your life as it is, thank God that you are atleast breathing😇

[popo1]

i have the same problem..C/L and others my mds had me try do not help...in fact make some of it all worse. as YoungPD said '...we all are searching...'. parkibot.com, this group are good resources. my 'stack' is ever changing and currently is just adequate, not good.

i am always looking and recently stumbled upon MSA and am trying to find a neuro to evaluate me. trouble is my current/past neuros are reticent to consider the idea, or provide a referral, because of a positive DAT scan. which should not be an excluding factor; especially since i exhibit 100% of the symptoms. nhs.uk/conditions/multiple-... one of which is stated 'In the early stages, the symptoms can also be very similar to other conditions such as Parkinson's disease'.

best of luck in your journey...

[Nutleyfrisbee]

HiPD really increased my anxiety and I am now on Cymbalta and low dosage sinemet and I am so much calmer I highly recommend those for anxiety .

Excerise really helps everything too. Start small and work up . Just walk 20min way day and u will start to feel better .

[Specterishot]

If your bradykinesia and turning in bed are NOT improved on Rytary, perhaps you need an increase in your Levadopa. Talk with your Neuro and perhaps he can add a small amount of Immediate releases C/L through out the day, or otherwise increase your Levadopa meds slightly in whatever way he feels will help.

Be sure to monitor your your response motor wise, and ask a partner or friend to help u assess . If the increase is helping your motor symptoms and your bradykinesia improves, you are on the right track. I find my HWP can not really see or feel his gait issues as well as I can observe them. If not for my close observations of his gait issues, he would still be under dosed by his Neuro. The Neuro watches him walk for about 20 seconds. My HWP can pull off a great gait pattern for that that long, but after 10 minutes or so, his gait goes downhill ( slow, shuffling and uneven step length). A bit more C/L has helped to improve those issues.. No dyskinesia so far, thank God. If he gets it, we will adjust his dose again. Good luck. Keep adjusting and exercising. Keep fighting for symptom improvement, be an advocate for yourself and seek medication changes if you are not getting the results you want. Too many people “ settle” for the Neuro’s dosing. Question, research , experiment, and make adjustments. I know we can’t make everything perfect… but why not keep trying!!❤️ to all in this fight!

[kruidjenat]

For my non motor symptoms comesfrom digestive problems. When I eat carbs and salicylaterich foods I have brain fog and fatigue. For motivation I have to take l-phenylalanine and l-tyrosine . For urineincontinety I have to avoid eggwhite and dairy espacially fats of dairy. dairy fats also give my anger and axiety. Also I have to up my lithium. And to aid my digestion and for better uptake of nutrients I use Astragalus. Also High dose of thiamine are needed for motor and nonmotor issues.

[Leest2023]

I also have primarily non motor symptoms, and as far as fatigue, lethargy, apathy and daytime sleepiness, they are all secondary to lousy sleep quality. I've had RBD the last year, but I'm sure the underlying pathology, rem sleep without atonia, has been undermining my sleep for years. I started clonazepam ( not something I would recommend) a couple of months ago, and for about the first 10 days I had wonderfully refreshing sleep and felt 99% better in terms of fatigue, apathy, etc. Then my body adjusted to it and my sleep turned crappy again and the fatigue is worse than ever. But the 10 days of great sleep proved to me that sleep is primary cause of my fatigue. Dopamine drugs have no effect on it. I have an appointment with a sleep specialist tomorrow, so hoping to find a better solution.