Life without dopamine : Is a lot less... - Parkinson's Movement

Parkinson's Movement
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Life without dopamine

bassofspades
bassofspades

Is a lot less funner than with. Everything seems so boring. Nothing exciting. Trying to hang in there and take my b1. And 10 other meds and supplements. Hard to get excited when your brain has to squeeze itself so hard just to get a tiny drop of the reward neurotransmitter.

Sorry just another rant.

101 Replies
oldestnewest

Qigong is not for everybody, but it replaces my need for dopamine and then some. Or perhaps it generates dopamine. I abide in Divine Bliss for hours at a time, plus it is improving my Parkinson's:

healthunlocked.com/parkinso...

Lala57
Lala57
in reply to park_bear

Can you tell something more about it ?

park_bear
park_bear
in reply to Lala57

Please read the abundant information I posted at the link. If you have specific questions after reading, then let me know.

JoeKev
JoeKev
in reply to park_bear

I tried it. Liked it. I do yoga so embrace mindful relaxation. I will incorporate it into my daily self healing exercise.

Trying just to hang on with a handful of pills is boring yes.. What if, not just hanging on, but adding some moving... fast walking, running, bicycling, rsboxing, qigong, socialising, working, loving etc.. you name it....

Thanks for the suggestions. I run my ass off at work where everything is let's go let's go let's go all day long. Im just tired of struggling. After a work week of fast paced Cath lab action i need to rest, recharge, relax and have some fun . Just seems that things are not as fun as they were before.

Hikoi
Hikoi
in reply to bassofspades

No i can imagine. Are you getting dopamine in any form? Without it you risk apathy and depression.

bassofspades
bassofspades
in reply to Hikoi

Yeah I guess I must be in the trough of my cycle.. i take some meds and supplements to support dopamine production but when your brain is running on less than 20 percent of dopamine production capacity you never get what used to be normal. I just have a hard time accepting my new normal!

Cleo16
Cleo16
in reply to bassofspades

Remember a while back you posted an awesome video of you playing your guitar. How about more of that for us to enjoy?

bassofspades
bassofspades
in reply to Cleo16

Cleo you made my day!

I missed something. Why can you not take Dopamine ?

Be very careful with depression, Its not something that you should drop in and out of.

Tread very carefully when playing dosage games with your brain. Hallucinations.

Basso , you know all this. What are you doing?

bassofspades
bassofspades
in reply to GymBag

You can't just take dopamine. It doesn't cross the blood brain barrier and will spike your blood pressure.

Im just melancholy because I can't do things as well as i used to be able to , like play my music. I can still play, just not as well as i used to , and not even that long ago .

bepo
bepo
in reply to bassofspades

Lithium oratate, which is non-pharma

AmyLindy
AmyLindy
in reply to bepo

Curious - that seems a bit Random. Do you happen to have a reference ? Maybe test for lithium deficiency first? Then supplement? Are you taking LO routinely? Dr Mischley once mentioned it to me but my values were high enough, already.

I read Dr Mishleys research and i have to say it was very impressive. Look, we're not thiamine deficiency, yet chugging thiamine megadoses helps most pwp. So try this. 10 to 20 mg a day will not hurt you . Give it 2 to 3 weeks and see how you feel. Please let me know and follow up .

Reading your mail...

bepo
bepo
in reply to bassofspades

humm...do you practice, or just play when you want?

bassofspades
bassofspades
in reply to bepo

Thanks for asking. Yes I practice all the time. Scales, hand exercises, fingering techniques,etc

bepo
bepo
in reply to bassofspades

Ok, dude, You need to jam with someone! We are going to meet in my backyard with band members when they get back from their kid's house. We will social distance in the backyard.

2 guitars, lead guitar, professional violin player, bass, drumer, vocals with 3 part, sometimes 4 part harmony.

bassofspades
bassofspades
in reply to bepo

When and where?!!!😁😂😁

You can still play Bass.

bassofspades
bassofspades
in reply to Cleo16

Not nearly as good as I used to

SGlass
SGlass
in reply to bassofspades

Bass I know I’m new but you still can play. I would love to see a video. Remember we are all loosing abilities. Seeing one of us still brave it at what ever level inspires the rest of us to keep at what we can still do but maybe not as well. Look forward to it!

AmyLindy
AmyLindy
in reply to SGlass

Play, Bass, Play. Video , Vid E O , Vid E O !!! (Chanting ...)

Hi bass,I was a touring blues drummer,who played a good blues shuffle and my ghost notes are nowhere as smooth,but it still is fun

My bass drum foot is really affected so when I play drums all i can do is 1/4 and 1/8th notes on the kick

Drumme
Drumme
in reply to bassofspades

are you a right or left side player?

bassofspades
bassofspades
in reply to Drumme

Right side hey we should start a band. Imagine the names we could come up with!

bepo
bepo
in reply to Drummer67

Blues keyboard player here. Hmmm, we got bass, drummer, keyboard.......

Drummer67
Drummer67
in reply to bepo

Guitar players are out there. Got the rhythm section here. Mid tempo shuffle ah 1 ah 2 here we go baababaabababa crash and now groove

Jeeves? We need you mate!

I hear you Bass. You saw my Freebird post with me trying my best to stay with it? A challenge for sure! I send it now in case you missed it 😳


Wow Jeeves! That's awesome! Thanks for reposting, i don't know how I missed that. Sounded like you nailed it note for note !

Sort of Bass but irrespective of how some think it’s joke of some sorts, it’s a pig of a solo especially with PD. That must have been my 10th take whereas Allen Collins nailed it in two! If you venture to my YT Homepage, I’m sort of more satisfied with my solos on That Smell which I always thought was a super track. Hope you’re doing ok pal. 😀

Chicachi
Chicachi
in reply to jeeves19

This was awesome and filled my dopamine up! I could play tambourine I think. I used to play guitar a little but ILost. Some of my rhythm and the ability to hold a pic in. my right hand. Now I’m trying to do my drawing and that’s hard too but Its helped me be motivated to overcome this condition.

Never stop doing what you love it’s God gifted talent to you.

Oceanflow
Oceanflow
in reply to bepo

I play guitar and sing!

Oceanflow will you do a video????

Sure Bass... if you teach me how to put it on YouTube (i’m slightly stupid with computers)

Of my dancing moves? Singing? Guitar playing?

All i do is

1 put my android phone in selfie mode.

2 prop up the phone

3 record video

4 upload to YouTube. You'll need a YouTube account.

Play guitar, sing, dance, tell a joke...anything you want to do !!

I'd love to see / hear you !!

Cleo16
Cleo16
in reply to bassofspades

This is amazing! I'm not a musician but I love that so many of you are and your videos Bass have made me feel really happy. Thank you x

Cleo16
Cleo16
in reply to bassofspades

How are you my friend? I love your music x

bepo
bepo
in reply to Oceanflow

I'm a backup singer. We had a good gig. Every Wed night we played in the side room of one of the few restaurants in our small town.There is enough room for dancing. It was a lot of fun. We played country, pop, blues.

AmyLindy
AmyLindy
in reply to Drummer67

Oh wow 🤩 Drum, Drum, Drum!

Let’s see ? Video , Video, Vid E O @Drummer67 🥁

I totally get what you’re saying. I feel it too! Between COVID-19 and Parkinsons we should be proud that we are not completely drowning in apathy/depression m!While my Enlightened friends are all living in the present, I’m bucking the trend , living in this past, remembering how I used to be and all the fun times I used to have with all my fun friends . If I am in a really bad mood I remind myself that Love trumps fun. There are people that still love me and care about me even though I’m not as fun or funny I used to be .

However ,I believe the future does hold hope !If I were you I would give yourself a pat on the back asyou’re still taking care of yourself and maybe soon there is a cure On the horizon!

HiddenThis reply has been deleted
ConnieD
ConnieD
in reply to Hidden

Do not give up or lose hope! This is a wonderful group to be a part of!😊

We are cheering for you! Can you hear us?

Thanks so much!

You flood your brain in adrenaline all week with your job. What role is this playing? People who live in an adrenaline state all have issues over time with the real world. Many of them engage in risky behavior or self-medicate to deal with the "downer/boredom" of real life. Look into the role of adrenaline over time on your brain and what you can do. I do believe your brain has a double whammy....dopamine depletion and an adrenaline state.

bassofspades
bassofspades
in reply to NRyan

Ugh you're absolutely right. Gotta work though and i don't have many other options

bassofspades
bassofspades
in reply to NRyan

I am really thinking about what you said there about adrenaline. Trying to become more mindful of this.

NRyan
NRyan
in reply to bassofspades

Do some research on it. Also, being mindful of finding joy in the smallest things in life will really help to keep you out of that "less fun" mindset. My life as I age is less fun, but I'm trying to not dwell on that and do what I can to enjoy every day. I make my own fun now. Think about self-pity and see if it is playing a role here. It is easy to get caught up in that trap. I'm focusing more on myself and self-care, and even though it is not"fun" compared to many other things I've done, I feel it is the most important journey I've ever been on....one that was lost to being so "busy" in the past. I may not be the most exciting person at a party now, but I am learning to not give a shit and accept myself as I am. I am extremely outgoing so this is a huge switch for me. I have felt terrible the last few yeas in social situations, but I've come to realize I am the one putting pressure on myself and judging me. Really connecting with a few good friends and myself is all I need to be happy. I no longer need to be the life of the party. I found a card on my car yesterday from a neighbor saying nice things to me.....that was enough thrill for the day....I also went for 2 walks with different friends and enjoyed being with them. Bonus! Plus the weather was FAB! Your life is truly what you make it. Follow Steve Fugate on Facebook. The Love Life guy. He helps to keep me on the "value my journey and find joy" path. I met him in person in December and that was my thrill for the month! Enjoy this day!

I'll get a new video going! Any bass requests?

I know nothing about playing bass or any other instrument, but how about HAPPY by Pharrel Williams??

I was fooling around with the songs happy and higher ground tonight. These are going to be great!!!


bepo
bepo
in reply to bassofspades

That's fun! Keep it up!

Are you on the right dose of B1?

bassofspades
bassofspades
in reply to bepo

I doubt it. Dr Costantini started me at 4000mg but now I take 2000mg. Who knows?

Cleo16
Cleo16
in reply to bassofspades

Amazing Bass!!!! Love it

Love your “happy“ bass solo. Thank you so much for sharing and encouraging all of us. Bless you.

Despe
Despe
in reply to bassofspades

Are u sure you got PD? All I see is a good looking young man playing his guitar!!

And don't let me rant, Bass, hahaha. How can I describe in words my daily routine, being overwhelmed and stressed out? We are all together in this world. . .

bassofspades
bassofspades
in reply to Despe

Thank you my dear friend, you made my day! Let me tell you , it took every cell in my rotten substantia nigra to pull this off ! You can see my right hand tremors.

Despe
Despe
in reply to bassofspades

Where are the tremors, can't see them. Keep playing and be an inspiration, at least you are to me.

bassofspades
bassofspades
in reply to Despe

Higher Ground please! (Stevie Wonder song)

Cleo16
Cleo16
in reply to bassofspades

Looking forward to it!!!!

Ok I'll work on them!

Using Zoom y’all can each play and see each other at the same time. I am a novice DJ at RadioParkies and would LOVE 💕 y’all to jam on our show. Are you on Facebook? Get on and message me - “Amy Lindberg” )I’ll set up your jam session if everyone is on Facebook Messenger or can send me their Ph #. Better yet, Bass: Direct Message me! We can make this happen!

Anything for you my good friend !!

Mannitol turned my husband's life around. He had extreme apathy, on the bed most of the day. Now he's talking, reading the newspapers and books, puzzles, and he's doing a 1000 piece (very blue) jigsaw puzzle, his third. We've had friends for dinner, which we hadn't done for over a year, because he wasn't well enough and wasn't communicating. His dizziness and fogginess have completely gone. He's also exercising on his exercise bike. It is truly amazing. See recent research on Mannitol and Parkinsons. His neurologist is amazed. I have my husband back.

That's really great to hear !! Mannitol does absolutely nothing for me , i tried it for 4 years.

bass, I just started two months ago and I am taking it by the boatloads. Making Zero difference.

Gwendoline only gives her husband one tablespoon per day and has achieved miracles. Her husband is one lucky guy🤣

Yes indeed! For me, if I have more than one tbsp i get insane gas and diarrhea

This is a pretty cool thread...it does enlighten me some knowing there are others who miss their music as I do fighting with Parky. Perhaps music is a point of agreement that might help us as a group, or perhaps art itself, organized into areas of similarity between us. Of course this could be shared virtually, but another idea might be to share general locations to see if that might have some benefit in the art and or music world as well.

Hi there, I just saw your comment re " boatloads" of mannitol ..😂. How's your tummy?

The research says that any more than 1tbs. up to 200 lb/90kg won't do anymore, except give you gas. Two months isn't very long. The research says it could take several months.

I think maybe that because my husband's problem was extreme apathy, we saw improvement very quickly. The disappearance of the fogginess and dizziness were also very quick.

I think his walking has improved slowly, but because he hurt his back along the way, it's hard to measure. He still feels very insecure. He keeps leaving his walking stick behind in the house now. We call it his "one way" stick.

Just now, because TL500 asked, we checked his handwriting and signature and yes, they have both improved.

Another member said his sense of smell improved after 12 months. My husband has been on it for just over 4 months. We are still hoping his sense of taste will return.

Hang in there.

Gwendoline, I have to say that I am surprised at the lack of any issues with my tummy. I have about 4 tablespoons a day. I buy from Amazon:

Bulksupplements Mannitol Powder... amazon.com/dp/B00QXQWHMY?re...

In fact, I would welcome the upset stomach if it ever comes about. I have chronic constipation due to Parkinson's and I have to take Miralax and Benefiber every day. In fact, according to the research, Mannitol offers a osmotic laxative benefit to Parkinson's patients.

Here is my post about my research into Mannitol partly inspired by your glowing testimonials about Mannitol.

healthunlocked.com/parkinso...

I didn't even know about the existence of the product until the came across your posts.

I am diabetic, so I have replaced my artificial sweeteners with Mannitol. It's still an expensive replacement though. However, if it gives even a slight improvement, I will never happy.

I am grateful to you for bringing it up to discussion in this forum.

I ordered my mannitol initially from Amazon, only to find, when the invoice arrived, that it was coming out of China. I don't mind Chinese made necessarily, but certainly not in this instance. Fortunately it didn't arrive. So then I sourced it here in Australia from a wholesaler who supplies it to the diabetic industry..chefs etc. It is from Spain, very cheap.

Where is your mannitol coming from?

Not sure. It doesn't say on the package. I have asked the distributor for clarification. Here's the link to the distributor and the page for the Mannitol. Interestingly, the only country that they won't ship to is Australia!

bulksupplements.com/product...

Odd that they don’t say where it’s manufactured. I thought it was a regulation in most places, certainly here in Australia.

It’s strange that you’ve had no side effects, particularly when you were having so much of it. 1tbs. up to 200lb/90kg is all you need. Any more does nothing, according to the research....syncolein.com

Would it be worth your while trying another brand. The one we have is made in Spain... sosa.cat

I wrote them and asked for instructions in English. Thanks!

Hi, who did you write to for instructions in English. If we are talking Mannitol and PD, see syncolein.com for dosage and research.

The Spanish company is supplying the diabetic industry. Nothing to do with PD.

Thanks. I will try it.

Hi Gwendoline, I have sad news for you. The following is the snarky answer from Bulksupplements!! The stuff comes from China. That's why they wouldn't sbip to Australia, I guess.

Perhaps that's why it doesn't work for me?

Jun 9, 2020, 10:29:40 AM PDT

Hello,

Thank you for your email. Please note that this product's Raw materials are sourced from China and we are a distributor of the product and can claim that it was "manufactured in the USA". Please reach out if you need additional assistance.

Thank you,

Nicole Q

Customer Service

Wow, sad news for you. At least you know now. Maybe you should send a copy of your email and their reply to the appropriate USA authority. Where are they (supposedly) based.

Do you think you should put a Post here telling of your experience, and feel free to mention my experience with Amazon.

I have plenty of the Sosa brand (that we know is authentic) and the supplier will have further supplies in a couple of months.

Exactly! Who are they kidding? I am appalled by the audacity of the assertion that they can "claim" "Manufactured in the USA!!". Rubbish for sure🤬

Gwendoline, I will absolutely make a post on this. The reply was from the distributor: Bulksupplements. Not Amazon.

However, I will include your experience as well by showing that Amazon does very little to do proper vetting on their suppliers and vendor merchants.

It's buyer beware. I am not sure anymore if even the stuff I am taking is Mannitol. I take 4 to 6 tablespoons a day and life just goes ho-hum😇

Well, we know the Sosa brand (out off Spain and imported into Australia as a sweetener for food) works and it’s cheap.

We know the Syncolein brand works, but, as it’s manufactured for PD, but is expensive.

AmyLindy
AmyLindy
in reply to pdpatient

I use this source as well and would prefer anything BUT China 🇨🇳 Lets find USA 🇺🇸 or other sources! I wrote to Sosa.cat in Spain 🇪🇸 asking for English translation 🎧

I probably should have said that this Spanish mannitol is what we are using, but they know nothing about the reason we are using it. They sell it as a diabetic sweetener. It's very expensive to buy the Syncolein mannitol, which is purpose manufactured for PD. Same product with something in it to settle the stomach.

bepo
bepo
in reply to pdpatient

Good move away from artificial sweetners. They are chemicals and actually, I have read many times, worse than sugar.

George used to have terrible constipation. He now takes magnesium and has no problem.

I, too, attribute return in sense of smell to mannitol. But frankly, it could be the B1?

I got my sense of smell back on mannitol, and let me tell ya, i f theres one symptom I didnt really care about its that! My coworkers with their crop dusting fart gas bombs...PHOOEY! LOL!

😅 I don't think my husband would care either, but his sense of taste is another thing.. He used to say "I live to eat (and drink)". He loved good food and wine. Now he says "I eat to live" 😟

Gwendoline, I am very happy for you and your husband. At least you are getting your money's worth. 😅

Mannitol impacts fluid balance among other things. It’s possible to have different reported effects on everyone. As a safe sugar “substitute” I use it and enjoy its’ effect on my bowels ,too. Lots of reasons to use it, plus the fruit fly research holds promise for PD. Hard to imagine that extrapolation - but it’s out there!

those lucky fruit flies!

Hi how much does he take and does it upset his stomach, I,m sure it upset my husband when I gave it to him thank you

AmyLindy
AmyLindy
in reply to Dragona

Up to 2Tbs /d - many achieve effectiveness w just 1 tsp/d

Dragona
Dragona
in reply to AmyLindy

Thank you so much for replying will try it again

There is no prescription- it’s all anecdotal as far as I can see on research forums

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