Addiction to coffee(?)

When I decided to start trying to get off the Rx PD meds for natural things I first quit coffee. Now I benefited I believe from quitting coffee while tuning up my natural methods for managing my PD but I sorely miss everything about it. The ritual, you know, of brewing coffee and the aroma of it and the satisfying feel of a warm mug in the hands. Coffee is something I intend to start again tomorrow morning but I really have no nutritional justification for it. Since fighting PD, it seems like everything I ingest must be for my betterment. I suspect that a possibly unhealthy desire to do something dissipating for a change is in play. What is your dissipation or left turn off the highway that is supposed to lead to good nutrition and better health?

53 Replies

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  • I have discovered that if I take a cup of coffee with my meds (Sinamet and Pramipexol) they kick in a lot faster. So I take coffee as if it is medicine. In fact sometimes I'd prefer a nice cup of tea. But considering the benefits I certainly don't need to feel guilty taking coffee.

  • You have a way of getting your meds to go to work faster? I say, stick with it.

    Taking them with a gulp of ale that is rich with hops does that also. Another one of my "bad" dietary things. But my choice of ale is full of hops and that makes it an anti-oxidant (my rationale). :)

  • Buzz we need a health drink: coffee, wine, chocolate combined in one with a hint of tobacco, ale on the side :-)

  • Hi Buzz. When I was diagnosed in 1992, my tremor was always worse after drinking coffee, so I stopped drinking coffee to see if it helped, and it did! So I haven not drunk coffee since then. I used to miss it very much, but I still get the smell of the coffee when my wife makes it, but coffee never tasted as good as it smells, so I kept the good part and have benefited from more controllable tremors.

  • Hi John

    Are you tremor dominant?

    Is there anything else you do apart from fast walking to help tremors?

  • id like to know as well

  • Hi Ryan. My shuffle is worse than my tremor, but if I am sitting down, trying to do things with my hands, my tremor becomes very apparent.

    Do I do anything other than fast walking? Yes. I do mind puzzles, like Su Doku. I write letters and type (Rather badly) a great deal. I keep myself busy and out of mischief. I also continually try to cut out harmful stress. That is not a once in a while thing it is an ongoing thing. There are always things happening that stress me and i have to work out what they are and how I can deal with them differently. Not always easy.

  • Hi John

    Thank you

    Have you tried topical Magnesium Oil seems to have good results on stiff muscles

    I also try to avoid stress but have 4 more years to go before I get to retire so not always easy

    Missed my morning coffee today but going to see how I go without it as I've noticed increased tremor as well

  • Hi Ryan. No I have not. Have you tried fast walking?

  • Hi John

    I clean for a living so pretty fit still, walk the dog and do a bit of Pilates 😊

  • Yes! It leads to a more pronounced tremor for me too. That's what's dissipating about it. But I've got to do the ritual thing although I might only dunk a cookie in the mug. :) Do you not have any "bad" eating/drinking habit to confess?

  • I would not say bad habits but I to find my meds kick in faster with coffee, and even faster if you substitute creamer​ for Irish Cream.

    Costco has a wonderful price for their labeled brand.

  • Hi Buzz. Of course, who hasn't? I am good at leaving food containing sugar but I am compelled to clear my plate and often take seconds, when I don't need it. I eat too much!

  • what do you recommend for a hand tremor. I was never diagnosed. neuro calls it a mixed tremor. I donot take any meds.

  • I've not found an effective way (non-Rx) to reduce my tremor. A good night sleep helps alright for awhile after waking up. Then it starts, you know.

  • Hi Rosabellazita. Try to continue as you are now, without medication. If you concentrate hard on keeping your hand still it works. I took up painting with oils long after I was diagnosed with Pd. I did paintings of houses and buildings where straight lines were required. I got very good at holding the brush still. If you contact me on - reverseparkinsons.net I will send you a picture I painted of a Cotswold cottage. Practice, practice, practice.

  • thx you always give people hope

  • Hi Rosa. Thanks for the encouragement. I do it to help others get better. If they beleive me and follow they will get the benefit, if not, then that is their choice.

  • John can you still smell the coffee brewing? Man do I miss that smell

  • Hi Serenity. Yes! How do we know how good our sense of smell is? My wife has an incredible sense of smell and she smells things I don't. How else would we know?

  • Well there are studies praising the value of caffeine e.g.

    aan.com/pressroom/home/pres...

    but coffee gives me the shakes, I prefer John Pepper's fast walk, then home with a cup of raw cacao in boiling water with a splash of coconut milk but each to their own :)

  • I know. I never saw the benefit in it but many people with PD (probably only hypo-kinetics, no tremor) praise caffeine. Hot cocoa w/coconut milk sounds like a treat.

  • My neuro says to drink coffee and tea for its positive effects.

    There are a number of studies. Like this from this journal,

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

    Potential Role of Caffeine in the Treatment of Parkinson’s Disease

    It was not until recently that the scientific community began to notice the neuroprotective effects of caffeine following the observation of lower incidences of PD reported in chronic caffeine users. Recent animal and human studies have suggested that caffeine may help to treat PD since it can antagonise the adenosine A2A receptors and inflammatory changes....

  • Well it is the day after I began this post and I had 1 cup of coffee with 3 ginger snaps and my fingers of my affected hand are possibly moving a bit less lethargiclly.

  • I hope that is not all you are going to eat. How about some toast?

  • Or perhaps toast?

  • Howdeedoodlydoo..lol. Aaaah so your a waffle man. I toaast therefore I am...:) :)

  • "BLACK TOAST INTOLERANT" lol

  • I actually try to drink more coffee

  • I Read somewhere that coffee was good for Parkinsons. I would hate to spoil this for you. I have, for the last 30 years had one stiff drink at the end of the day. However I have given that up recently as I''ve found my sleep is less disturbed. I am aware that many people have the belief that holding off on medication slows down progression of PD but there is increasing evidence that this is not true. What I find most puzzling about the PD COmmunity is the fact that there is so little pressure to get the dozen or so supposed neuroprotective drugs thru Clinical Testing. The case of MJFF's handling of Nilotinib, a case in point

  • I have the solution. A good stiff drink about an hour after dinner. Or before for that matter.

  • I am suffering an epic cramp in my right upper back and shooulder...speaking of things stiff...and I just tonight reawakened to the possibility of drinking a whole bottle of ale...I am no longer on Rx that might interact with alcohol...I AM having a stiff drink or two of a "hoppy" ale! :)

  • I have tried repeatedly to get in this program clinical while they never respond

  • They are considering candidates that are geographically close to Georgetown U.

  • Just north of philly

  • In ballpark my guess. Let them know where you are. I got a callback and in Greatfalls VA

  • Are you going to do it? I would,

  • No. I am, in their humble opinion not far enuf along in PD (a nurse who interviewed me said over phone interview). But I had somewhat decided that taking Nilotinib in a clinical test was NOT a good idea for me

    1. 33% chance of getting placebo

    2. At end of test, likely they would discontinue drug (and monitor my decline as was done with Phase 1 participants.

    3.There is no path, long term to being on the drug. For all intents and purposes I'd either be so far gone or pushing up daisies by the time the drug was approved and available at a price below a Rockefeller Budget. Remember this is USA where drugs are 4 or 5 times more expensive than elsewhere.

    The answer of course is to seek a physician and drug source outside US, which I am doing. Keep in mind that US now ranks 37th in the world in medical care.

  • Mexico it was posted by a lady who gets it for her husband, also ntcells has an option coming up soon. Waiting to hear more. They're in new Zealand. And malaria drugs work but not approved yet. I just want my life back. Its only been a year or so for me.

  • Let us know how it goes

  • You should consider... it is v hard to get through

  • As one of that sizeable percentage of pwp for whom loss of sense of smell was the earliest thing lost, I offer the following: Coffee without aroma is like__________without____. (You fill in the blanks). After downing a morning handful of pills, (mandatory) and at least one glass of water, (highly recommended), a steaming cup of odorless brown liquid loses much of its appeal compared to a cold Diet Coke or Dr. Pepper. (Sorry JP.)

  • Oh man ronn have I got a tip for yoou. EMERGEN C! A kind lady herein turned me on to tryig it and the first thing that occurred worth mentioning was...after awhile I could smell stuff..lasted for abooot an hour and a half.

  • What was the second thing worth mentioning?

  • It has a nice taste for a drink to swallow a handful of suppelments

  • Wives tales, an important misinformation phenomena that precedes the internet and will not identify the truth, no matter what.

    BAD THINGS we are told:

    anything that tastes good , sugar , coffee , nicotine , alcohol , gluten , hotdogs , any fast food like Pizza, red meat , aspirin , meat from wild animals, white bread , meat from an animal that caught a cold and was treated, pork , processed food, sunshine on and on.

    GOOD THINGS they claim:

    any thing that tastes awful , vegetables like broccoli, yams, and brussels sprouts, chickens that wander around outside, meat from animals that were not helped when they got sick, etc.

    Everything in moderation, nothing in excess. Too many studies over many years show the benefits of Caffeine and nicotine for a Parky to ignore them. Remember: animal fat (butter) bad, vegetable fat (corn oil ) good , but now it is completely reverse, now butter is "good" cholesterol , too much corn hidden in our diet and when heated new toxins produced from vegetable oil.

    If you feel good about denying yourself something you like, so be it, but real pain like chanting while hitting yourself in the face with a bible is the really best way.

  • That is sooo funy tonight. I am a bit snockered. speaking of things that taste awful reminded me that some PWPD are seeking improvement by taking inosine. They coud allmerely eat offal. :)

  • If you like coffee there are a number of other nutrients in decaf which makes it worth drinking.

    EHT - ncbi.nlm.nih.gov/pubmed/232...

    Betacarbolines (which are in tobacco too) -

    ncbi.nlm.nih.gov/pubmed/161...

    Niacin/nicotinamide in coffee:

    ncbi.nlm.nih.gov/pubmed/190...

    4CQL - ncbi.nlm.nih.gov/pubmed/150...

    Basically, 4CQL has naltrexone like properties and it too can be used to treat PD:

    sciencedirect.com/science/a...

    Both niacin and nicotinamide have been shown to be of for PD. Certain my caffeine has been proven to be 'neuroprotective' but caffeine is only 1 component of coffee.

  • Thanks Rich. My wife (MS) is supposed to take an aspirin daily. When I let her know research has revealed some relief from MS fatigue maybe she will. Also interesting is why coffee, even decaff instant coffee cn relieve or wake up a person effected by an opioid. And who knew there was niacinamide in coffee?

    You're THE MAN!

  • Buzz,

    It's my pleasure. In my documentary, which is close to finish, I have studied coffee and various teas and learned coffee has multiple neuroprotective ingredients in addition to caffeine.

    I accidentally discovered the coffee/nicotinamide connection and was as surprised as you. More than any other vitamin, I studied niacin and nicotinamide. I am convinced that every PD patient should take 250 mg of extended release niacin (or 100 mg per meal) and nicotinamide. They have different properties and different bodily effects. Niacin affects the GPR 109a receptor (niacin receptor 1) which is usually inflamed in PD patients. Niacin alters the HDL to LDL ratio while nicotinamide/niacinamide does not. Nicotinamide produces twice as much NAD - nicotinamide adenine dinucleotide, an important source of cellular energy, than niacin. Nicotinamide has been shown to increase joint flexibility and lessen osteo arthritis symptoms. Nicotinamide improves memory function and as little as 500 mg of nicotinamide a day protects the skin from non-melanoma skin cancer (which is associated with PD).

    Nicotinamide has been shown to be potential therapy for Parkinson's, Alzheimer's, MS, ALS, and Friedereich's ataxia (which currently has no therapy). Strangely enough nicotinamide has antimicrobial activity and Isoniazid, Pyrazinamide and Ethionamide - 3 TB antibiotics, and they all are derived from either niacin (isoniazid) or nicotinamide (pyrazinamide & ethionamide). In 2013 nicotinamide was added to a Petri dish which contained MYRSA and it killed the bacteria dead. Nicotinamide has anti HIV activity and researchers are investigating its use on HIV patients. It is quite the handy vitamin and I believe niacin/nicotinamide are at the heart of Parkinson's disease.

  • OKAY! I'm getting me some 100mg tabs of nicotinamide :)

  • Swanson has 250 mg capsules and, in the 1930s, a Dr Kaufman found the body can only absorb 250 mg every 1 1/2 hours. The max dose of nicotinamide (by regular practitioners) is 3,000 mg/day. So if you take 250 mg nicotinamide every 1 1/2 hours, that equals 12 capsules a day. The problem is to have a consistent timer/alarm to mark the time. Of course you should try a single dose and see how you react. By taking niacinamide at lower doses, 250 mg vs 500 mg +, you eliminate possible side effects too.

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