Webinar about Sleep and Parkinson's

[CPT_Helen]

Recording of yesterday's live broadcast webinar discussion: youtube.com/watch?v=MiikQ2J...(Not working as expected?)

The panel would really appreciate any thoughts, comments or questions you may have when watching this so please do post below!

[Enidah]

Thank you for posting this. It was a very informative discussion. As so often happens it seemed to highlight how much we don't know as opposed to what we do know but still worth taking the time to listen.

[tarz]

A number of years ago, I found that the Parkinson syndrome was beginning to greatly affect my sleep (discomfort, rls, shaking). Having always been a very sound and satisfied sleeper, I could not tolerate this. So I began taking sinemet only at night, so I could sleep, which worked very well for many years.

But I knew I couldn't always depend upon sinemet meds to continue to work forever, so I began to seek, and learned quite by accident, that unaltered Mucuna bean powder was an effective natural substitute. So I began experimenting with it, to discover how to take it and what dosage would work for me. This was in November, 2018, and it took a few months to discover the solution that is currently providing me with the best sleep I have had in many years.

I'm sure that it won't work for everyone, due to our differences in body chemistry, but perhaps it may help many. So this is what I do each night. About 2 – 2 ½ hours before retirement I make two hot cups of matcha green tea (from powder), to which I add the mucuna powder and sweetener to taste. I drink just one cup at that time, saving the 2nd one for bedtime.

I wait to feel the effect of the first cup, which takes effect within 20 minutes to an hour or more thereafter, depending on when and what I had previously eaten. For maximum effect I find that I should not eat for about 4 hours prior to medication, and to avoid protein meals at that time.

So once I feel the effects of the first cup, I relax completely, and begin to fall asleep until the 2 – 2 ½ hours or so, have passed since my first cup of tea. At that time I arouse myself to drink the second cup. But at that time I also take a tablet of 350 mg of L-tryptophan (I had discovered an old bottle and remembered that it makes you sleepy).

I've only been using this L-tryp for about a week now, but it has added 2 or 3 hours to my morning sleep, and I awaken with very little parkinson symptoms, which I find amazing!

So I hope lots of people have the sleeping success that I am finding with these simple ingredients.

[lempa_nik in reply to tarz]

How much Mucuna do you put in each cup? I have organic Mucuna powder from Banyan Botanical, but it does not dissolve in water. Does yours dissolve? Instead of the L-tryptophan capsule, you can also try 1/4 teaspoon of GABA powder. (It has a mild soporific effect for me.)

My wife questions the use of Matcha tea because she says it contains caffeine. But if it works for you, more power to you.

[tarz in reply to lempa_nik]

I have refined my formula over time and experimenting, so this is what seems to be working best for me. I always use heated water to the boiling point, pouring it into an 8 oz. cup, followed by a teaspoon of matcha green tea powder. The mucuna hardly works without it, as it allows more of the l-dopa to be absorbed into the system, much as in sinemet, the c-dopa permits the absorption of more l-dopa. Anyway, I next add a tablespoon of the mucuna powder. Both powders mix in quickly when the water is hot.

I find that I can enjoy this tea only after adding honey and non-dairy creamer to taste. And the amount of caffeine in the matcha tea seems to be so slight that it never interferes with my relaxation or sleep.

[lempa_nik in reply to tarz]

Thanks for the quick reply. That's good to know.

[pdkid in reply to tarz]

do you only do this for sleep and take sinemet during the day? my dad is currently on sinemet, and has been supplementing it with mucuna to avoid freezing. mucuna helps him way more than the sinemet, but he needs the carbidopa in the sinemet to activate the mucuna. so the matcha tea acts like carbidopa? how long does the mucuna last then? wow, thank you!

[tarz in reply to pdkid]

I find that I normally have no need for medication during the day.

Yes the green tea has a substance that seems to act exactly the way that Cdopa acts

[pdkid in reply to tarz]

oh wow, ok will try that. thank you!

[tarz in reply to lempa_nik]

BTW, I have no longer been using the l-tryptophan, as it doesn't seem to make any difference.

[Natboo1 in reply to lempa_nik]

I take a capsule from British supplements but only started for Parkinson and am wondering if I should still take Azilect...

[Davewt47 in reply to tarz]

My husband has PD and we found that half a dropper of CBD oil 1000mg helps him sleep. Sometimes he takes a 600mg infused gummie along with the oil. During the day, if he becomes anxious, he takes a gummie and it helps to calm him. You don’t need a Medical Marijuana card to purchase. This has improved his quality of life immensely as he is getting a better nights sleep.