Does anybody have any thoughts on this as I am desperate to slow the progress of my illness. I am on syndopa 11/2 tabs,pramipexole1.5mg thrice daily and amantadine 100mg twice daily. Of late 4hrs after the first dose of syndopa I feel internally unsettled legs feel weak and slight tremor appears.0.5 klonipin helps and I get thru the day till 4pm when I require 1/2 dopa. I have started taking 1tbsp virgin cold pressed coconut oil thrice a day for the last three days. I have noticed the dramatic improvement some patients talk of.
Any suggestions are most welcome.
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Nimvas5962
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I worked up to eight tablespoons of CO a day, with no notable effect.
I recently started amantadine that has caused two side effects: 1. constipation is worse, 2. difficulty urinating. These conditions should only be temporary.
I am also having frequency of urinating.but I more concerned about these sudden episodes of unsettlement and legs becoming wobbly. What is it ....off time????
Don't know why your post popped up now after 14 days - I don't understand this website.
Anyway, as park-bear suggested do try NAC. I have taken it for 10 weeks now and most symptons are gone and I no longer spend all day thinking I have Parkinson's. Mind much clearer too. I take 600mg a day - only ill effect is dry mouth.
I just signed on to this forum and am investigating alternatives for my daughter. she has not started taking anything and would like to try alternatives. I am interested in how long and if the Nac is still working. If anyone else has tried it
Hi. I'm still taking it no decline really so far. I am also taking mannitol, vit b's and magnesium as well as 1 azilect and 3/4 of a madapor pill. Also playing lots of tennis and trying to eat better.
All the allopathic drugs have terrible side effects, try Ayurvedic Kappi Kachu ( Indian Mucana), 1 TBS in empty stomach x 3 times daily ( Before BF, Lunch & Dinner ) with 1/2 fresh lemon juice for quicker ON time( 20 - 30 min from intake), after that have food, it will last for about 2.5 to 3 hrs. After food , please have Ashwagandharista 1TBS x 3 times after food( After BF, Lunch & Dinner ) . I take Vaidhyaratnam Kerala INDIA ( google search, they have online and deliver world wide by courier ). For stopping progression, early morning empty stomach try Fresh Turmeric root about 3-5" ( peal the outer, cut into small pieces ), crush in the mouth so that it leaves turmeric juice & gulp with half glass of warm milk added with 1 TBS Honey, 1/2 TBS Cinnamon powder . If possible slowly add 2 Garlic pods along with turmeric pieces , increase 2 more per day and go upto 8 to max 10 pods, stay with this for 3 months, you will notice improvements. Slowly replace all allopathic meds, which has more side effects. Drink coffee 3 cups per day, this will also help slowing down progression ( Google search on all the above, you will get more info).
Take Foxtail Millet 5 TBS with 2 TBS Cold pressed coconut oil, soak in water for 30 min, steam cook in rice cooker, eat before BF and Dinner , it also helps in managing all CNS problems.
Exercise. I know it sounds too simple but whatever else you're doing, make sure you try and put aside a time of day to do something fun and energetic, even if you have to make yourself do it at first. LSVT Big in my case helped a turnaround mentally and physically that drugs haven't done for me yet. I'm early though, only 2 1/2 yrs since diagnosis.
I too am an advocate of LSVT BIG exercise. 4 yrs since dx. On B1 therapy, very helpful too. Been reading a lot about coconut oil for PD. Been using CO for cooking not realizing benefit. Now adding 1tbsp in bullet coffee, will slowly increase. Anxiously awaiting benefits. Could use more energy. Rhodiola helps there. Appreciate the grounp support from the forum.
My understanding is that the ingestion of coconut oil (3 times daily) works best with a low carb diet. My information comes from Bruce Fife's book "Stop Alzheimer's Now!: How to Prevent & Reverse Dementia, Parkinson's, ALS, Multiple Sclerosis & Other Neurodegenerative Disorders". My husband has been following the high coconut oil (at least 75g per day) and low carb (less than 100g net carbs) diet for about a year now. He definitely swears by it. He's not cured by any means, but he has a much improved quality of life. He finds his diet easy to stick to, he doesn't feel hungry, and he is delighted to have no constipation. Exercise and a positive attitude are of course very important too. I can post his daily diet if you want me too - just ask.
This is Don's everyday diet, recipes are shown below as indicated. Sorry this is such a long post. We have developed this diet over the past year based on the book "Stop Alzheimer's Now" by Bruce Fife. We have also done a lot of general reading about gut health.
Breakfast:
1/2 cup muesli (recipe below, contains coconut oil)
1 tablespoon LSA ( it's a product made from ground linseed, sunflower seeds, almonds)
Milk
1/4 banana, sliced
1 tablespoon berry sauce (recipe below)
1 teaspoon normal supermarket thickened cream
2 tablespoons dessicated coconut (we buy this from a health food store so it has no preservatives)
1 slice low carb bread
2 teaspoons home-made coconut butter (recipe below), spread on bread
1 teaspoon marmalade
1 teaspoon cream
1 cup caro (non-caffeine coffee substitute) with cinnamon and milk (we believe cinnamon possibly has some positive effects for PD)
Lunch:
Main:
1 1/2 cups minestrone soup (recipe below, note that turmeric is an ingredient, I try to use turmeric where I can as we believe it also has some positive effects for PD)
1 slice Helga's Low Carb bread fried in
1 tablespoon coconut oil (fried bread is very yummy! :-))
Dessert:
1/2 cup muesli
1 tablespoon LSA
Milk
4 tablespoons plain yogurt (we make it ourselves with "easiyo" yogurt mix)
1 tablespoon berry sauce
1/4 banana, sliced
2 tablespoons dessicated coconut
After Lunch Treat:
1 to 2 squares Cadburys 70% cocoa chocolate
Afternoon tea:
1 choc wheat biscuit (just an ordinary supermarket biscuit, a wheat biscuit coated on one side with chocolate - Don likes chocolate! :-))
Tea:
Main :
Small serve of whatever is cooked, including vegetables. (There is a saying: eat like a king at breakfast, like a prince at lunchtime, and like a pauper at teatime. It is supposed to be better for your gut health.) Vegetables always have butter or coconut oil with them. (Apparently the nutrients in vegetables are significantly more available if eaten with fat.) Meals are always cooked using coconut butter.
Caro (non-caffeine coffee substitute) with cinnamon and milk
**************
Muesli
Makes about 4 litres :
4 cups rolled oats
2 cups desiccated coconut
1 cup almonds
1 cup walnuts
1 cup sunflower seeds
1 cup pepitas
200g melted coconut oil
Mix till combined.
***************
Coconut Butter
1 litre coconut oil, melted
1 tablespoon liquid lecithin
Mix to combine, then I pour into lidded containers. The coconut butter will set solid again, and can be used in cooking, and instead of butter/margarine. We live in a temperate climate, so we just leave it at room temperature on the kitchen counter.
I use Fearn's liquid lecithin, but I'm sure any brand would be fine. The liquid lecithin is an emulsifier, and it makes the coconut oil more like a spreadable butter once the mixture solidifies. I also believe it adds extra brain nutrition. The mixture is also more non-stick than coconut oil by itself.
*****************
Berry Sauce
In medium saucepan, combine:
500g frozen mixed berries
1/2 cup water
Cover, and heat at low heat till simmering (around 35 minutes on my stove)
Puree, and store in glass bottles in the fridge. Seems to last about a fortnight.
**************
Minestrone Soup (makes about 4 litres - 12 serves of 1 1/2 cups each))
In large pot :
1. Combine at low heat:
60g coconut butter
2 teaspoons salt
2 teaspoons garlic granules
2 teaspoons turmeric
any other herbs or spices you like
Pepper to taste (I use 20 shakes)
2. Increase heat to medium/high, then stir fry for about 6 minutes:
200g chopped bacon
1 onion, chopped
leeks, shallots, red onions if you have them
120g chopped celery
120g chopped carrot
3. Add, stir and bring to boil, then cover and simmer for about 50 minutes:
8 cups water
1 tin kidney beans, drained and rinsed
1 jar any pasta sauce
1 tin diced tomatoes
8 blocks frozen spinach
1 tablespoon parsley if you have it
2 chopped zucchini
50g any pasta
4. Can be stored in fridge for about 5 days, or can be frozen. I don't use home made stock because I don't have time to make it. I don't use commercial stock because it usually has very high levels of glutamates which we believe have a negative effect on PD. We believe the vegetables in the soup are really good prebiotics for improving gut health.
That's a great diet, quite like one I used to follow but with a few good extras. Think I shall give it a go again. Thanks Jeanette for the good recipes. Suffering Socks
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