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Danti1968

Going the natural route

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My PD was just confirmed by my neurologist within the last couple of weeks. I had been having noticeable symptoms for at least the last 6 months. I'm fairly young (45) and I've been doing extensive research on PD drugs. The side effects all seem pretty scary to me especially since I have a long way to go in dealing with this disease. I decided to do a 180 with my lifestyle and have started exercising regularly, eating better, and have also added supplements. Especially after I added the supplements my symptoms improved quite a bit. I'm taking B6, Vitamin E, and L-Phenylalanie. I've been so consumed with researching PD I've found there seems to be so many potential new drugs and treatments that seem to be right around the corner. Anything I can do to slow down the progression I am trying. Time is obviously not my friend but my thought is to tough it out for as long as I can without the PD drugs.

 

I would love to hear your opinions and experiences and also from people who have tried a similar route.

Thank you

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well, such a personal choice.  i was already on mirapex for another issue ( related i think ), so they just upped my dose and strength.  it made me sleepy at first, but no longer.  this helps with the milder things.  if i keep bent over at the waist a bit, and keep tripping, i will get another med.  when you are bent over already ( not a lot, but headed forward ), when you trip, you tend to start falling by running forward before eating it.  that is the next place i'm going to have to go.  however, i have to get to the point that my falling issue is more chronic, before i decide to add in another drug.  will happen eventually.      seems to me, that if diet,, exercise, and vitamins help your symptoms enough that you are okay with it, great for you !  no reason to take drugs til that doesn't work for you any more.   drugs don't cure, won't slow down the disease, so there is no advantage to starting them before you need to.      my opinion  :)   lu

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.....oh, the meds can help with the symptoms a lot, but like i said, YOU will get to where you want to stop a symptom that your healthy lifestyle isn't fixing, and then, only then, do you need to deal with it.   just stay aware...:)

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Hi Danti and welcome to the forum!

 

I was diagnosed with PD a couple of months ago and I'm in a similar situation to you. I am riding my bicycle regularly, taking supplements, and not taking PD meds. I was taking the supplements before being diagnosed with PD because I also have late stage Lyme Disease, which has basically destroyed my immune system. The doctor I see for that is both a Naturopathic Doctor (ND) and a MD, and was previously a chemical engineer (very smart).

 

One of the things I started taking recently is Protandim, which is a NRF2 synergizer. Basically, it reduces oxidative stress on a cellular level. My Lyme ND/MD originally had me taking it to help rebuild my immune system, but interestingly oxidative stress is suspected by many experts as being the underlying cause of PD and many other neurological diseases. My ND/MD is hoping that it will improve or cure the PD, but I haven't had any positive results after being on Protandim for about 2 months. I guess after something takes literally years to develop, it may not get fixed in 2 months. LOL! Interestingly, the Michael J. Fox Foundation is funding research on another NRF2 synergizer.

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Danti,  I was 61 when diagnosed and I think you are doing the right thing.  Your being 45 I would think makes it even more important that the consumption of real meds be held off as long as possible.  I would also suggest asking the Nutritionist on this site - she is very, very knowledgeable.  I think she is phenomenal!!!  

 

Another supplement you might want to look into especially since you are not taking Levdopa is L-Tryosin or called Tryosin.  Supposedly it is a nautral dopamine (I think).  I was using Cretin monohydrate powder but it was pulled from trials because of lack of success as well as CoQ10 was found not effective.  All supplements are expensive so . . .

 

I go on another support group for pd - called Daily Strength.com and there are a few there that do not take any meds at all but use supplements and health diet.  Many suggest the mitochondria diet.  Dr. Terry Wahls has books out on how it helped her Multiple Scleroses but she shares her diet on the internet and youtube.  

 

Also Tai Chi for some reason is very good for the PD.  Before taking Levadopa I had terrible pain from rigidity in my arm and especially fingers and I found that Tai Chi relieved the pain for a couple of days at a time.  Once I retire (maybe this year hopefully next year) I plan on trying to cut my sinemet by doing more exercise.  The weights seem to be very helpful and relaxing if you ever start to get the rigidity.  The amount you lift is not important (I have read that less is actually better for the pd muscles) but the amount of sets and range of motion you get with the weight machines are very good.  The range of motion is very important because PD will try to cut your range of motion.  Good luck!  Also they have lots of trials out now for supplements.  I am joining a trial in January for a supplement.  I have been in 3 trials since being diagnosed.  Being in a trial really helps to find a cure.  Join a trial finder - this site or Michael J. Fox.  They especially like people who are not taking meds yet!!!!  You don't have to try anything that is too risky - there are more that are not risky than are risky.  Maybe when I get older I'll go for the riskier ones.  lol  It can be a fun and healthy trip!.  

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My psychiatrist recommends Magnesium (500 mg twice a day); Bioavailable Folate; Vitamin D drops and Coq=10.  So far its been too many pills for me to take in addition to my prescription drugs, but I do believe in the Magnesium, which also has a mild anti-anxiety effect.  Eventually I will try them all, it's just hard to take so many pills (along with Mirapex, lipitor, anti depressant, BP medicine). 

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The natural route might be helpful in early stages, but I have my doubts that you could get away with supplements, special diets., or medical MJ use as monotherapy as PD advances.

 

My PD is fairly advanced. I'll freeze in a chair or in bed and the only thing that will get me out is Sinemet and Requip.

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I have had symptoms for 3 yrs and a PD diagnosis one yr ago.  Lots of exercise, excellent nutrition, no meds yet, supplements of folic acid, magnesium, K-2, b-6, Coq10, krill oil are in my inventory.  But, it (PD) is progressing and frustrating me.  I am seeing the neurologist next week and I will try sinemet.  The problem with going at it outside the formal medical authorities is that there are a lot of outfits out there without scruples looking to make $.  It is a matter of chance  to find something helpful. All I know is that the dopamine insufficiency makes me miserable physically and psychologically.  i will try conventional medicine, hoping the side effects will not outweigh the benefits.  It is great to be able to share on this forum.

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I was dx in January with YOPD and I am 53 years old.  I struggled with taking meds but the rigidity & tremors were getting the best of me.  I opted to go on a low dose of Pramipexole and Azilect. Initially the side effects were horrible but most have eased up.   I have always been consistent with exercise so it is helping with the stiffness and helps me feel better mentally.  You have to do what is best for YOU.      

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Do they call it YOPD when you are in your 50's. My husband was just diagnosed this year and is 50. I though it was under 40 or 45? Just wondering?

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When the symptoms are bad enough you'll know and then you will start meds. I've been on meds 3 Years and have no side effects. So I'm really not sure about the horrible side effects.

 

I would tell you not to delay meds if you really need them though. There is no guarantee how long or how well the meds will work for you. Wouldn't it suck to delAy meds and live with a low quality of life now while you're young because you're hoping for some unknown possible benefit in the future that never pans out.

 

For me I take what's available now and I pray for medical advances in PD to handle my future problems. I think everyone with a chronic/progressive medical condition needs to be an optimist. Some days it's the only thing that gets me through.

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I was diagnosed 3 yrs. ago - tried Amantadine, Mirapex first with intolerable side effects., but have been on Sinemet only for about two years with no side effects and very good results.  I don't see any down side to trying Sinemet at a low dose.

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I have 7 years to go till retirement. I was diagnosed 4 years ago and did not start taking PD meds until 2 years ago. Last winter, I was given L-Dopa when I was hospitalized due to pneumonia, but I stop taking it and switched to another neuro's meds. This neuro told me not to take L-Dopa until other meds cannot get me to move, because the side effects of L-Dopa (no matter what you call it) are going to be far more difficult to deal with which can jeopardise my career. I am suffering from tremers, slow movment, poor balancng, hunch back, and slow movement, This is  how I fight PD using the natural way:

1. Exercising: riding the spin bike (warm up below 80 RPM for 10 mins-->80 to 90 RPM for 40 mins --> cool down below 80 RPM for 10 mins). Working out different muscle groups after a 48 hour intervals and streching as far as possible using the lightest weights;

2. Becoming a flexgetarisn: Eating fish and vegetables.

3. Drinking red wine (cheap but made in USA).My neuro said cheap red wine is just as good as expensive wine for PD.

4. Taking calcium and megnisium to improve sleeping.

5. Listening to my favorite classic music.

6. Meditation.

7. Drinking a spoonful of coconut oil + a big jar of cold water first thing in the  morning to take care of constipation.

8. Listen to TED talks, and identify unfamiliar expressions, to keep track of brain cell deaths due to PD.

9. Swimming with a kickboard and doing dolphin kicks; this is suposed to train your back muscles.

 

 

I am open minded and would like to listen to you talking about what new natural methods you use that work for you.

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