So far this is what I have tried. Please respond with your list.
Nupro patch, Stalevo, Sineret
Sineret cl, Azilect, Rytary, NAC
Coconut oil, MSM (makes new hair growth), Israpadine, insonine, bakaclofen, gabpenten, donepezil, mannitol (what a joke?) trehalose, folinic acid, niacin, reservrasol, magnesium, B-12 and all assorted vitamervins. Not all these at the same time haha or I would be glowing in the dark. Currently taking rytary, azilect, magnesium malate, and allithiamine, NAC, and the reservatrol.
Nothing has made a difference so far, I think I paid Amazon enough to hire 20 new employees. I'm going to revert back to wine and cigarettes. You'd think I would be inffallible, unstoppable or in some partial remission. Any imput Or suggestions. I need a smoke!
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Catlou
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Sinemet mirapex azilect NAC estrace CBD uridine l-theanine Co q-10 Lexapro clonazepam Xanax and probably some I'm forgetting. This doesn't count any of my vitamins. I just take sinemet now as my main PD med. That and exercise are my mainstays and all this hoopla about new this and new that just goes right by me because I know if there's really something new that really works I will hear about it big time. Until then I'm just going to live and enjoy everything I possibly can about my life. By the way people who smoke are supposedly less likely to get PD. Hahaha, what a life!
I also am becoming very disillusioned and cynical. I have one thing left and that is exercise comma I guess I'm going to have to try it. According to everybody else it seems to work
parkie13 Beemacs my Parkie and I belong to a Parkinson's exercise class, which includes Rock Steady Boxing. That has been his salvation, and I've witnessed the changes in all of the other participants as well! They love it!
All I'm taking after 6 years is premipexole ER 2.67 mg one in the morning, Azelect one in the morning and Madopar 100/25 about 9am.,Multivitamin B complex, Magnesium and CBD .since starting the CBD 3 months ago my sense of smell has come back, I'm talking better, no longer napping. I'm sleeping a bit better ,the only thing I have which I wish would go away is the pins and needles in my left hand which wakes me most nights after about 5 hrs sleep.After I get up have a pee,a drink and walk about it goes off and I usually get another hour or 2 sleep.Not sure if it's the PD ,old age or a trapped nerve.!when it's really bad try tens machine ,massage hot/cold soaks nothing really relieves it it just goes off eventually.
Also I exercise every day, be it 2 hrs tennis a 50 km bike ride or fast walking.
The dr. gave me tablets for cramps & I didn't realize after the 1st one I took what was wrong but when I took the 2nd one I knew it was the quinine--it about killed me!
Your comment about talking better spurs me to ask you to elaborate on that one point. My hubby can barely get a sentence out, can't come up with the right words, gets so frustrated that he just shuts down and doesnt talk much. We r both at our wits end.
Two heaped teaspoons of bee pollen granules in a breakfast bowl.
Mix one half teaspoon cinnamon powder with pollen granules.
Add three Sanitarium Weetbix and fill bowl with milk.
Wait until Weetbix have absorbed liquid milk, mix with spoon
and eat. I do something else while Weetbix is soaking.
After breakfast:
Two capsules Bloom’s Curcumin 600 Plus 631.6mg curcumin (eq to 600mg curcuminoids) plus black pepper extract (eq to dry fruit 131.5mg), one Bio Organics CoQ10 150 mg optimal capsule, two Blackmore’s Total Calcium, Magnesium +D3 tablets, one capsule Lifestream microalgae oil V-Omega 3 801mg,
2 Comvita Olive Leaf Extract capsules (equiv to 3.5 gms fresh leaf x 2), one Centrum Advance 50+ tablet (multi-vitamin/mineral tablet)
10 a.m. one Sinemet CR tablet
2 p.m. one Sinemet CR tablet
10:30 p.m.
One Bio Organics CoQ10 150 mg optimal capsule,two Blackmore’s Total Calcium, Magnesium +D3 tablets, one 600 mg Magnesium tablet (stops night cramps), one Cenovis Mega B tablet, two capsules Bloom’s Curcumin Plus with Bio P as above,
2 Comvita Olive Leaf Extract capsules (equiv to 3.5 gms fresh leaf x 2).
The Mega B is taken late at night because it conflicts with
Sinemet CR.
Weetabix in the UK is like Weetbix. I am a lacto-vegetarian and do not take fish oil at all.
The microalgae oil is taken instead of fish oil. I find that the curcumin enhances the effect
of Sinemet CR and any other medication as well. The timing of the Sinemet CR is less critical
if curcumin is being taken as well. When I have a urinary tract infection, I take an extra two
of each, curcumin and olive leaf extract capsules during the day as well, either at midday or
at 2 p.m.
The above system is working very well for me, and has been for some time.
How do you keep track of all that & what does it cost you per month? Also, did you figure out what to take or someone like a nutritionist, herbalist, etc.?
Daily practice makes it a habit. The cost would vary from country to country. I live in Australia where supplements tend to be expensive. I get bee pollen in 3 kilo bags from a large beekeeping company, then store it in jars. It is very expensive from health food shops. I was taking flax seed oil capsules but you need 6 to equal one fish oil capsule, and they are expensive. One micro algae tablet equals 6 flaxseed capsules. I worked out the routine that suits me, by myself. The most expensive supplements are the curcumin with black pepper extract for absorption, and the micro algae Omega 3 capsules and the bee pollen. I have a list of health problems the size of Gone With The Wind, but Parkinson's and cancer have my full attention, most of the time. Everything else is minor stuff. I may have to begin long term chemotherapy soon as well. My cancer from 2005 is back again, tiny spots but in multiple places.
I'm tremor-dominant. I've tried and found useless zonisamide, keppra, neurontin (gabapentin) and regular sinemet. Tried NAC 125 mg. 3X a day (according to dr., necessary to cross the blood brain barrier); no discernible effect. Recently went to timed-release sinemet but found the dystonia unbearable. Now taking inosine, 55 mg. 3X a day -- only a few days in, too soon to gauge effectiveness. Also cymbalta (for nerve pain). I haven't found CBD effective at controlling the tremor.
I also take calcium, magnesium, B complex daily, vitamin A and D once or twice a week. I was taking curcumin daily but frankly something had to go -- I couldn't gulp down that many pills! I also take, unrelated to PD, thyroid and wellbutrin.
Oh! And I take Tasigna (nilotinib), 150 mg. 2X a day. I take it specifically for chronic leukemia, and for that it has been 100 percent effective. However, it hasn't helped curb the PD one iota that I can see.
I'm scheduled for an "on-off test" in the doctor's office and a 3rd DaTscan.
My neuro told me Thursday that it's hard to gauge the effectiveness of supplements since most people don't take a high enough dose to cross the blood brain barrier...
You might try a Dopamine Agonist like Ropiniroll. I have Tourettes and Restless leg. The Ropiniroll with the Sinment I take should hafe helped my restless leg, but no, my Tourettes tics went away. Go figure,
but seriously, you have a neurological co-morbidity with PD and the answer is in the Dopamine. I hope you have a doctor who will screw around with it.
Everybody is different. I am also tremor dominant. I find the Sinemet CR okay, quite smooth and 90% of the time, my tremor is controlled. Late at night after the last Sinemet has worn off, my right hand tremor seems to go up to my shoulder, and my left hand now has a mild tremor. I have had problems with urinary tract infections due to my Parkinson's and prostrate problems. I find that the curcumin and olive leaf extract combination suppresses E.coli. It is better than taking antibiotics. It all becomes a balancing act. Sometimes I have problems with saliva and my voice as well. I should mention also that I will 69 in May, so am quite an old man.
Okay so I take the following on on prescription: Half Sinemet 8,1,6,11, Rasagiline first thing together with Adcal (calcium +vit D), Omeprazol, Felodipine (for high blood pressure.
I also have a Neupro patch at night.
I also choose to take Vitamin B complex, Vitamin E, Ubiquinol (Co Enzyme Q 10), Turmeric, Flax seed oil (Omega 3) and a Probiotic.
Have been diagnosed 5 years and haven't deteriorated a lot. I do yoga, tai chi, Dance for Parkinsons and walk.
My husband's been diagnosed 12 years and is 63. He takes 1 x Sinemet 3 times a day, 1 x Sinemet CR at night and 1 x Azilect per day. Over the past few years I have tried him on so many supplements that he 'rattles'. He's not very good at providing feedback so I'm never sure which supplements (if any) are doing any good.
At the moment he's taking Ashwagandha, Milk Thistle, N.A.C., L-Glutamine, Probiotic, Vitamin B1, Magnesium, Turmeric, Vitamin D3, CDP Choline, Vitamin B Complex, Quercetin/Bromelain, Optimised Folate (B9), Methylcobalmin (B12), Vitamin C & Niacinamide
In the past we've tried Uridine, Salmon Oil with Astaxanthin, Alpha Lipoic Acid/Acetyl-L-Carnitine, Zinc, Vitamin K2, Boron, Glutathione, 5HTP, S-Adenosylmethionine, Olive Leaf Extract, Coconut Oil (which his stomach is unable to tolerate) and COQ10 Ubiquinol
His diet was notoriously bad which I have slowly but surely changed over time. He's now trying very hard to cut out gluten and sugar, he's also cut down his alcohol intake dramatically but does still have the occasional beer. Unfortunately he hardly eats anything during the day as he never feels hungry - if he did want to snack on something, it was usually biscuits but now he snacks on raw sugar snap peas instead.
Just recently I've noticed a change (for the better) but don't know if it's due to one or more of the supplements or the change in diet.
I just need to get him moving a bit more. He's just joined my local gym so he can use the exercise bikes and the Power Plate Vibrating machine. Unfortunately he has no strength in his thigh muscles or torso and consequently cannot stand up for very long or walk for more than 10-12 minutes at a time......but we're working on that! If anyone has any suggestions, they would be most welcome. Rock Steady Boxing sounds as though it would be great but unfortunately it's not available here in the UK
Btw Catlou we also tried Mannitol (yes, what a joke), all it did was upset Glen's stomach, he couldn't tolerate it at all. In your experience, is Trehalose the same? I've been trying to establish the difference between Mannitol and Trehalose, and if it's worth trying the latter. We also have MSM in the form of organic sulphur which Glen is trying (didn't realise it makes new hair growth!), but the taste is awful.
What's your opinion on resveratrol? That is one we haven't tried, although we have tried Xanthohumol and Ecklonia Cava, both of which have supposedly superior antioxidant qualities but we didn't notice any difference in Glen's Parkinson's symptoms.
What brand of allithiamine are you using?
I think between you and me both, we must have paid Amazon enough to hire 40 new employees!
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