Great reaction from my nuerologist... - Cure Parkinson's

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Great reaction from my nuerologist...

JAS9 profile image
JAS9
52 Replies

My neurologist was blown away today when she asked me to walk so she could see how much worse I'd gotten. Instead, I'd gotten much better! She said "This is just amazing. I never get to see someone who has had Parkinson's as long as you have, walk like that!"

I started eating better a year ago, and I've been walking a little further and a little faster every day. It wasn't easy and I'm certainly not cured, and I wouldn't have been able to find the energy or clarity without getting rid of the junky food and eating real plant food full of nutrients and fiber. I gave up some fake food (like twinkies) that made me sicker for healthy, much tastier real foods that allow me to feel better and improve or even reverse some symptoms. So I get much more than I've given up, and I'm living a better life now.

Most people make a change because they're scared of what will happen if they don't. But fear is short-lived; it's too easy to undervalue any progress as "not worth the trouble" and slide back. Instead, once the fear gets you going, you have to find positive reasons to continue on the right path until new habits and taste preferences form.

Why do you want to live longer and be healthier? Seems like a dumb question, but the answer is what will keep you going forward. And, in case you missed it, once you get the junk out of your diet, real food tastes sooo much better than fake food! The food that most people eat smells like chemicals (or worse) to me now!

One great motivator is wanting to be there for your kids and grandkids. I have aa new one - my first - and if I'm not there to help him, he'll probably be stuck in the same food trap I was in all those years, eating junk and thinking that it was the best that I could do. So do it for the kids!

Have a great life!

PS For those wondering, yes I take thiamine and a few other supplements that might have helped, so this isn't some sort of study; just my experience.

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JAS9 profile image
JAS9
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52 Replies
Erniediaz1018 profile image
Erniediaz1018

Thank you so much for sharing the hope. Congratulations on your new addition to the family.

Fed1000 profile image
Fed1000

Great Jas! Buon Natale.

JAS9 profile image
JAS9 in reply to Fed1000

Merry Christmas to you, too!

JerMan22 profile image
JerMan22

That's great news! I'm trying to do something similar but it's taking a lot more time and effort than you seem to have experienced. What sort of diet, specifically, are you using and why do you think it's working so well for you? Also, some details on your training plan and results would be hugely appreciated. Thanks!

JAS9 profile image
JAS9 in reply to JerMan22

I hope that I've answered your questions with my latest posts. The WFPB diet helps in many ways; unclogs arteries to the heart, brain, and lower-back/pelvic area, for one thing. Reduces inflammation with natural antioxidants for another.

JerMan22 profile image
JerMan22 in reply to JAS9

Thanks. I'm already on board with WFPB. Took me about a month to switch over from SAD (Standard American Diet) because I was addicted to cheese, but I've been 100% for about 3 months. I noticed an increase in energy and less brain fog. It's helped some with the walking, but I haven't had any luck getting my "natural gate" back. Can't seem to do "skipping" or anything fancy as you mentioned. Anything else I can try?

JohnPepper profile image
JohnPepper

Keep up the walking, and don't walk fast every day. Give your muscles a chance to recover.

andrehypnotic profile image
andrehypnotic in reply to JohnPepper

You are my inspiration in the world of that Demonic desease named Parkinsons.I refuse to take any Parkinsons drugs,which destroy brain cells!!

shanaandbear profile image
shanaandbear in reply to JohnPepper

You will always be my hero, John! When I was first diagnosed four years ago, a friend told me about your book. You gave me so much hope. I don’t take PD drugs. My neurologist is onboard with me in using good nutrition and exercise instead. Love you, John!

JohnPepper profile image
JohnPepper in reply to shanaandbear

Hi Shanandbear. I thank you for your kind words and am very pleased to hear you are doing so well. I have many critics who are very skeptical about fast walking, but I also have many followers who are doing very well, like you. I just wish everybody would follow your example.

I hope you will carry on the walking, only try to limit it to every second day.

Kind regards for 2019.

MBAnderson profile image
MBAnderson in reply to JohnPepper

Why do you recommend every other day for exercise?

JAS9 profile image
JAS9 in reply to MBAnderson

My guess is to let the muscles heal any small damage. But IMO at first you wouldn't be doing long walks because you'd be limited by the PD symptoms, so I wouldn't worry about it until later.

MBAnderson profile image
MBAnderson in reply to JAS9

I think you're right about the rationale, but I'm thinking the every other day schedule might apply more to somebody who's doing a serious workout, i.e., pushing muscle groups to the very limit. That's not what I do. I could work out 2 or 3 times a day and that would only help. If my muscles could talk, they be saying, "What exactly is it that we need a 2 day rest from?"

billiards profile image
billiards

Hi. JUS9,

wish you a happy new year and to all our community.

regards , BILLIARDS

Motherfather profile image
Motherfather

hi jas well i was just thinking awhile ago about the place were i grew up in ireland, i now live in australia this song is always in my head .i went home a few years ago to see my family and i did all the things van morrison sang in this song, i took my mp3 player with me and just listened to this song as i walked through the hills and valleys for 6 hours, im 72 now and i go walking every day yesterday i walked 8 klm in my bare feet listening to nice music as it keeps me young while i grow old as the song says.so keep it up what ever you are doing so a very happy life ahead of you and keep doing all the things you are doing maybe get yourself an mp3 player put all the music you love and go walking in some lovely places.regards,john.

andrehypnotic profile image
andrehypnotic in reply to Motherfather

Should I be walking bare feet here in the UK i shall be arrested and be shipped off to a Institution.

Grew up in SA.

Motherfather profile image
Motherfather in reply to andrehypnotic

youtu.be/KVUntbzmHkg

in reply to Motherfather

I have been sleeping grounded for eight or nine years now. Sleep is almost never an issue any more.

JAS9 profile image
JAS9 in reply to Motherfather

Thanks, Motherfather. I'm glad you're out there walking too. I'm a big fan of walking to music. How we approach it will differ, but the fundamentals are simple: push yourself when you can, eat right (again, I have my opinions and you'll have yours), and whenever you can enjoy being outside moving, seeing something you wouldn't have seen if you'd stayed inside on the sofa. If your music inspires you and being barefoot connects you, go for it! I do enjoy walking to a quiet place surrounded by nature and breathing in the air. Somedays I can even smell some of it!

Motherfather profile image
Motherfather

youtu.be/wLNqDDNrwFE

Beanie57 profile image
Beanie57

I’d be interested in know what other supplements you are currently taking and in what aspect you feel each one helps?

Janet

Motherfather profile image
Motherfather in reply to Beanie57

hi beanie well 1 take 1 madopar 200/50 4 times a day 1 tea spoon of mannatol twice a day, 2grams of thiamine b1 twice a day 1 total calcium magnesium tablet 1200 mg i just started using cannabis oil so im still waiting to see how it helps ill try it for a few more months to see what happens ill let you know. i exercise every day when i have a good day i exercise every day doing more .one of the most important things when you exercise is puting on your headphones and listen to uplifting music when you walk .it helps me try it.have a good year beanie keep on pushing.regards john.

andrehypnotic profile image
andrehypnotic

Are you taking any Parkinson's drugs?

Motherfather profile image
Motherfather in reply to andrehypnotic

yes the madopar are for parkinsons. i have tried other things like azilect and a few others but they did not work.exercise is one of the best things for pd.regards john.

Annieartist profile image
Annieartist

Fantastic- even having had a couple of pre festive weeks off my very similar diet I can feel a little bit of the symptoms, the stiffness and tremors return - I’m back to it tomorrow and can’t wait!

Festive greetings to you all

LindaP50 profile image
LindaP50

Quite wonderful for you. Keep up the good HEALTH and have a Happy New Year!

shanaandbear profile image
shanaandbear

How much thiamine are you taking? What other supplements? So happy for you!

in reply to shanaandbear

facebook.com/groups/2322600...

Parkinson's Relief, Questions and Answers

JAS9 profile image
JAS9

It seems that a few of you want to know my supplement list, exercise plan, etc. I'll answer all of you later today, but right now I have to (get to) go walking!

Sorry, time got away from me. Hopefully, I'll have time tomorrow to do this.

munchybunch profile image
munchybunch

Would love to hear more details of yr diet etc

JAS9 profile image
JAS9 in reply to munchybunch

Diet seems to be a flashpoint for some people. Before I answer, I want to make sure nobody misunderstands me; I believe that many diets are perfectly fine for health. Having said that, I obviously believe that my diet is optimal, otherwise why would I be using it myself?

My diet is pretty strict, but I have reasons for all of it. To begin with, it's WFPB (Whole Foods Plant Based) which means that I don't consume any highly processed food; only whole grains, no refined sugar or refined oils or fats. It also means that I don't consume any animal products (meat, dairy, lard, etc.) Yes, this is a vegan diet, but it's more strict; many vegans consume highly processed foods.

I won't go into all of my reasons here, and I don't want to turn this topic into an argument about veganism, because the diet isn't the point. If you believe your diet is working for you, then great - let's get walking!

If anyone wants to hear why I've chosen WFPB, let me know. I might put that information in my profile if that's allowed.

MBAnderson profile image
MBAnderson in reply to JAS9

I cannot imagine why it would not be allowed. Please do it.

munchybunch profile image
munchybunch in reply to JAS9

Pls just tell us. I’m sure it’s ok. Does that mean you don’t have coconut oil??

JAS9 profile image
JAS9 in reply to munchybunch

I'll answer this, but I'd like to answer any diet questions via direct messages in order to keep this topic focused on exercise.

I personally don't consume any concentrated oil that is no longer bound inside whole foods, including extra virgin cold pressed olive oil or even coconut oil. I might be over-cautious on this point, but Dr Caldwell Esselstyn is (as far as I'm aware) the only one who's shown repeatedly that his approach can REVERSE cardiovascular disease with a WFPB diet with no added oils. Why do I care about CVD instead of PD? Our brains have arteries too, and if your arteries to your heart are clogged, those to your brain and lower back and legs will be clogged as well. In order to get to our goal of exercising "vigorously", it seems to me that all of that has to be unclogged. youtu.be/b_o4YBQPKtQ

JerMan22 profile image
JerMan22 in reply to JAS9

I like this idea and now I'm wondering if this is my problem. After 3 months I still get exhausted after about half a mile. Is there an easy way to test for clogged arteries?

JAS9 profile image
JAS9 in reply to JAS9

Alright, I've added a list of WFPB benefits to my profile. I don't go into detail, but I'll be glad to provide links to video and/or studies to support each point. This list is undoubtedly incomplete and I'll be adding to it.

Please send direct messages to discuss it or request more info; I'd really like to keep this topic focused on the positive effects of exercise. I want to encourage exercise, no matter your diet, and diets can become so divisive.

jimcaster profile image
jimcaster

Very encouraging! Congratulations and thank you for sharing.

JAS9 profile image
JAS9

Here's my current supplement list. It's changed only slightly from the last time I posted it:

Fisetin 100mg

D3 2,000 IU (if I can't get out in the sun for 15 minutes)

K2 100mcg (If I took D3; they go together because being out in the sun makes D and K)

Wild Blueberry Extract 1000mg (if I have no blueberries)

Algae-based Omega 3 DHA 200mg

Gaba 500mg every other day

Magnesium 100mg 2x daily

Amla 250mg (aka Indian Gooseberry)

B12 500mcg every few days (because I'm vegan, but you might need it even if you aren't)

Ubiquinone 300mg

B1(Thiamine) 1.5 grams, taken throughout the day per Dr. Constantini

JAS9 profile image
JAS9

My dx was 10 years ago. I take Rytary (61.25mg - 245mg). It's the only prescription that I take, and the only one I have taken in over 3 years. During that time, my dose has increased from 4 or 5 pills /day to 5 or 6. That doesn't seem too bad to me, but I want to stop increasing it altogether.

Over the 12 months that I have been fast-walking, my condition has changed greatly, so I've kept pushing the envelope. I wish that I'd had my fit-bit back then, but I'll just have to remember as best as I can. This is roughly how it went:

1st day - I wanted to walk, but just couldn't find the energy or focus. Went back inside to sit and mope.

2nd day - walked a few yards, felt sorry for me again, went back inside.

By end of 1st week - walked 20 yards, rested, turned around and walked back.

After 1 week, I switched from vegetarian to WFPB diet.

2nd week - walked 50 yards up a small hill and back down; increased distance by about 10-20 yards each day. A little farther and faster each day.

By the end of the 2nd month, I was walking a mile a day, up and down small hills. I'd walk a 1/3 morning, 1/3 after lunch, 1/3 before dark.

During this time, I still had a lot of symptoms as I walked, and although I'd increased my speed, it wasn't really very fast. I'd guess just 2 mph on average.

3rd month, I started HDT, but didn't get my dose really right for over a month.

By month 5, I was walking 2 miles a day and my natural gait was starting to come back. But I still had to resort to tricks a lot of times. (I'll get into my bag of tricks later if anyone's interested, but this includes various arm swings, finger tapping, skipping, etc. Some have been mentioned elsewhere.)

By month 7, I was going for 3 miles a day. At this point I overdid it (one day I fast-walked 5 miles!) and I strained a few muscles, etc. I now average 3 miles a day, but only a little more than half is done at full speed. Full sustainable walking speed for me now is 3.3 mph as measured on a treadmill. I have short legs, so this is pretty fast for me.

I've found that I do better if some days I walk at a more relaxed pace. This is similar to taking a day off; I still walk but take time to enjoy the scenery, stop to sit and watch a cloud, or just walk with a slower friend so that we can talk. It allows any small injuries to heal and it relaxes me.

Since I started doing this 2-3 months ago, my natural gate has almost completely returned. If I'm well-rested, I don't have to think about it at all. If something is affecting me, the symptoms do come back, and I have to use a trick or two to keep going.

I forgot to mention music, optimal heart rate...

There's more, but this is already too long.

jimcaster profile image
jimcaster in reply to JAS9

VERY encouraging! Thank you for the encouragement!

Malcomx profile image
Malcomx in reply to jimcaster

Hi there, this is very good to hear. Quick question, do you think that indoor cycling at a fast pace would work? I can work but am sometimes plagued by toe dystonia, thus makes walking difficult. Hope you keep doing well and all the best for 2019!

JAS9 profile image
JAS9 in reply to Malcomx

I think so. I don't have a complete list of all the studies that have shown the effects of high intensity exercise on PD, but here's a link to an article on one of the latest. There's a link to a more detailed report in the article: michaeljfox.org/foundation/...

Take-aways from this study: your goal should be to get to the point that you can increase your heart rate to 80-85% of your maximum heart rate, and sustain that for 30 minutes (then repeat that 3-4 times a week). Obviously, for many of us, that's a goal that's not easily reached, but that doesn't mean we shouldn't do whatever we can. Of course you should work with a doctor to be sure what you're doing is safe.

Your question was specifically about indoor cycling, and I can only speculate because this study was based on treadmill exercise. Other smaller studies have shown some benefits of cycling, so my guess is that it would also work. I do treadmill walking 3 times a week, but mostly walk outdoors. I enjoy the outdoors which motivates me to walk more.

Malcomx profile image
Malcomx in reply to JAS9

Thank you for your reply. I'll try walking as much as I can but the toe dystonia plays merry hell sometimes. Your input is jyst what I needed to keep me focused on exercise. Sometimes I do get a bit despondent. We must fight on and maximise what we have. Thanks once again. Good luck everyone for the New Year.

Astra7 profile image
Astra7 in reply to Malcomx

I believe cycling is very good for PD.

Motherfather profile image
Motherfather in reply to Malcomx

youtu.be/ptj1XEn3E3E

rsacdoolittle profile image
rsacdoolittle in reply to JAS9

Thank you!! :)

JAS9 profile image
JAS9 in reply to JAS9

I'm a big believer in using food as medicine. I won't get into why right now, but often food delivers better nutrition than supplements. Because of this, a few "supplements" didn't make it into my supplement list; to me, they're foods, but others might choose to take them as supplements. They are:

Lutein (perhaps the best antioxidant and protector of eye and brain. It's in green leafy veggies.)

Beta-Glucans (improves gut flora health, increases overall vitality, enhances the immune system. It's in oatmeal and nutritional yeast.)

Omega 3 (Largely what a brain is made of. Though I take a supplement, I also eat ground flax seeds.)

JAS9 profile image
JAS9 in reply to JAS9

Also, the right kind of music helps a lot. IMO it should have a fast beat and an energetic, positive feeling or song. Here are a few youtube videoes with some examples (your tastes may vary, so please share your favorites).

youtu.be/cyEVJIwpU0k

youtu.be/0dFz10R529g

youtu.be/GD0QM9f1bM4

youtu.be/0bj4i-sW44s

youtu.be/BFWuDBaoqWM

Motherfather profile image
Motherfather

good for you jas to-day i felt like not doing any walking as well i said to my self no im not going to let this fuc-ing parkisons beat me so off i went feeling like i want to go back to bed again but i put my mp3 player on and walked 4 klm around the lakes, sometimes i see big koi fish that makes me feel good when i see them, got home again went to bed for an hour feeling a bit better now as i had a massage at the marked place as well so just keep pushing as if you slow down it will bring you down.the video is were i walk most of the time a very nice place to walk.regards john.

Motherfather profile image
Motherfather in reply to Motherfather

youtu.be/WD3Sy4fIyH4

JAS9 profile image
JAS9 in reply to Motherfather

What a wonderful place to walk! I have similar places and I enjoy it so much. Fear and anger can get you started, but it helps if we can find positive motivators too, like nature and music!

ElliotGreen profile image
ElliotGreen

Wow. This is a great post. I didn't see it before, but I'm glad I found it now!

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