Natural Dopamine vs C/L

[Boyce3600]

I was reading an article about this and can send a link later but wondered if anyone had any information about this. I guess the primary concern would be whether dopamine crosses the blood-brain barrier. It's late and I'm exhausted will check tomorrow thank you for your replies

[Ramuu]

Please Google search Mucana or Kapikachu Indian Mucana, you will get information about Natural Dopamine.

[JohnPepper]

H Boyce. There is no doubt that dopamine cannot cross the blood brain Barrier. My question is why do we not look for ways of increasing the brain's ability to produce more dopamine. There is a natural protein, which is produced in the brain called GDNF. This stands for Glial Derired Neurotrophic Factor. Glial cells are the cells that produce dopamine. Neurotrphic means Neuron Repair. So the name tells us that the brain produces its own repair kit for Pd and that is in the very area of the brain where there is a shortage of dopamine.

How does the brain produce this GDNF protein? I have not read the answer to this question, other than the fact that the brain does produce it.

Instead of spending billions of dollars on finding that elusive cure for PD, why not find ways to produce more GDNF in the brain and repair more of thse Glial brain cells and thereby produce more dopamine?

I have managed to turn my Pd around by doing FAST WALKING. Others have managed to also improve their condition by doing High intensity exercise in the gym.

What we need is a study carried out on Pd patients whereby they all do different types of exercise and see which one produces the best results. Measured over a 12 month period using the UPDRS rating scale would soon show up the results and we could all learn how to produce more dopamine in our brains and start to live a normal life again, as I have.

I still have Pd, but at a much lower level than it was in 1992 when I was diagnosed.

Give this some thought!

John

[park_bear in reply to JohnPepper]

Levodopa, of course, *does* cross the BBB and then gets converted to dopamine and keeps most of us going.

[Boyce3600 in reply to park_bear]

Yes it is a good med. Did you have to play around with your dose for quite a while before you figured out how much was making you feel good? Did you experience any side effects with it?

[park_bear in reply to Boyce3600]

The most important thing was using the controlled release/extended release version. The immediate release version worked very poorly for me - a burst of too much with some dyskinesia, then too little. The CR/ER version no side effects and does the job.

[mymomhaspd in reply to JohnPepper]

Hi John,

Thanks for all your responses. I could agree more - til mom was walking twice a day , her PD was manageable - then she had a few falls , ,hairline fractures , vertebroplasty etc and her PD also became worse.

Things were still under control but recently she had another fall , so her ability to walk which is also controlled by the 'fear factor' is zero right now . I really wanted her to go to her conference , but not sure they can take her (she is in Boston and Im in SF ) given her current now .

She is going back to PT and massage therapy and turmeric - hopefully when things stabilize a lil we can go in this direction.

[JohnPepper in reply to mymomhaspd]

Hi Mymomhaspd. It is dangerous to do any walking alone, if the patient has stability problems and is prone to falling. Has she got anybody who could hold her arm while she is walking? Using a walker does not stop her from falling! I strongly recommend that patients should be held by the arm while practicing walking and until they get stronger and more CONFIDENT they should continue to be held.

You are quite right when you intimate that she has no confidence because of the falls. Nobody would want to walk if they keep falling!

When I show people how to walk properly I hold their arms in such a way that they feel safe and I can feel them relax, as they start to walk. Within a short while I am able to semi release their arm and they manage very well. I would never let them walk alone for at least 3 or 4 months until they got a lot stronger and more confident.

If we give in to the Pd we will go down very quickly. We must keep moving and we must get help in order to do so.

Good Luck!

John

[mymomhaspd in reply to JohnPepper]

John,

Thank you for the quick response, her fall has made things hard, My dad needs another person to put her on the theracycle also .,

just posted this in the forum:

We are giving her sinemet , amantadine, Mirapex etc. Over the years we have reduced the amount of sinemet (I think she was overdrugged in the beginning - and we couldn't tell as her tolerance to meds was good ) . Now 1/4 sinemet every 2 hours , to try and follow the less meds at more frequent interval helps dyskinesia . Sometimes it works at other times she gets her off sooner than later . Tried to alternate it with Mucana ..

She had a fall a month ago ( not the first time) and after this her ability to move has become even less (she has been needing someone to help her even go to the bathroom the last few years ).. but worse now as she hasn't been able to exercise much at all (bought her a theracycle a few months ago). Her balance and strength are pretty down and I think with every fall her self confidence that she can move also goes down the drain.

Right now trying to get her back up with PT and massage etc .. still no energy to get on the theracycle .. in fact she has the symptoms of sleepiness , where she can barely keep her eyes open. Does anyone know why ? Is it too less levodopa or a side effect of sinemet ? What should we do ?

Also started her on NAC since yday , gave her two today but will taper to 1 a day till we know how it affects her .

She has had pd for 10 years , with some neurologists thinking she didn't have PD to begin with and over time things changed ..

So the questions are

1) How have people maintained a balance between on and off times .. i.e. dyskinesia and stiffness

2) Why the sleepiness.

3) She is caught in the cant exercise, hence wont get better cycle .. how to break this cycle.

Any feedback would be great . To see her go through all this breaks my heart everyday :(

[laglag in reply to mymomhaspd]

Part of her sleepiness could be not only from the meds but from constantly struggling with the disease itself. It can be very tiring especially when she's not exercising. It wears you out. Does she get lots of antioxidants?

I take Emergen C for stiffness. It has 1, 000 mg of Vit C plus some B vitamins and electrolytes. I also take Krill oil and Coconut oil.

[laglag in reply to mymomhaspd]

Is she seeing a movement disorder specialist? Also, besides the other supplementsI mentioned, have her doctor check her vit D level. A lot of PwP's are low in vit D3. My level was low & my doctor put me on a couple of mega doses & now I take it on a regular basis. I take 1, 000/every other day. It did help my energy level.

[mymomhaspd in reply to laglag]

Multi vit, vit b injections, vit D, omega, calcium.

We were giving her coq10 supplement, but MJF foundation said it isn't really beneficial. Also take milk thistle sometimes

[JohnPepper in reply to mymomhaspd]

Hi. I'm very reluctant to even try to answer any of these questions. I don't know enough about your mom.

1. How old is she?

2. Is she a self-motivated person?

3. Does she or did she enjoy doing exercise?

4. Has she, in your opinion, given up?

We cannot make patients do anything, they have to want to do things themselves.

John

[mymomhaspd in reply to JohnPepper]

Her motivation has gone down after struggling wuth the disease for 10 years and having to also deal with multiple falls . She is 73.

She used to be motivated to exercise and walk till a few years ago .. she was still getting on the theracycle - as she didn't have strength to go on the treadmill , but after the latest fall things have gone down again ..

[park_bear in reply to mymomhaspd]

Does she fall due to inability to maintain balance or is she fainting from low blood pressure?

[mymomhaspd in reply to park_bear]

Major balance issue.

[park_bear in reply to mymomhaspd]

There are two possible Parkinson's related reasons for the sleepiness:

1. Fatigue is common among PD patients. You are already giving her Amantadine which is supposed to help. You could also try selegiline which is a mild stimulant.

2, Day-night sleep reversal - does she get adequate sleep at night?

[Boyce3600 in reply to park_bear]

What about caffeine ..is it ok to have coffee or drinks with caffeine if it is separated from C/L by hour or so? I have read yes and no to this .

[park_bear in reply to Boyce3600]

Dunno. Have not checked into that.

[mymomhaspd in reply to park_bear]

Last few days she has been getting good sleep , but the lack of energy is still there.

[Donzim]

Having or not having dopamine is not the only problem. It may be that one produces dopamine but the cells do not open to release it....per our neurologist.

[Boyce3600 in reply to Donzim]

Have not heard of that before, but I am so new to this that I have not heard of a lot of these things before. What can be done in that instance?