Confused and overwhelmed

[Sleeplessparki]

I’m currently 59 and 7 years dx. I currently take only the prescription drugs directed by my neurologist which consist of rytary, amantadine, ropinerole, methylphenidate. I exercise daily but it’s not enough and my progression downward continues, I’m freezing up more often, my tremors are getting worse etc.

I read from other folks posts about positive results from using such supplements as Mannitol, magnesium, thiamine, amino acids, herbs, vitamins, curcumim to name a few. It’s all very confusing! I would like to give these supplements a try but not sure where to start and my neurologist wouldn’t recommend I even try them but I’m at wits end with this disease. I realize this disease affects everyone differently but there must be someone out there that can recommend a starting point with using these supplements effectively.

I would ask some of the folks like silestrov, Roypop, alexask and any others willing to help me establish a jumping off point with these supplements.

Thanks in advance for your responses. Mark

[Hidden]

Read my Profile

Also Google ibuprofen parkinson's

[Enidah in reply to Hidden]

I had never heard this about ibuprofen. Thank you, Roy, for mentioning it! I'm going to start taking it again. It will help with the pain also.

[jeeves19 in reply to Enidah]

For any benefits you might read if ibuprofen be also aware that it's one of the worst culprits in damaging the gut too when used regularly.

[park_bear in reply to jeeves19]

Liquid ibuprofen encapsulated in a gel cap helps mitigate this problem since it spreads out rather than landing in one spot. Also, take with food.

[Sleeplessparki in reply to Hidden]

Thanks Royprop for the input. I looked over your profile you have done some great study and documentation. I have a lot to read through but thanks again for sharing your findinds.

[Astra7]

Hi. I am 53 and was diagnosed 2 years ago at the same age as you. I take loads of supplements but believe that NAC and magnesium are the most important. I also take probiotics etc to help with gut bacteria. I try to stick with a high veggie, low sugar diet though I struggle to avoid sweet things. So far my decline is very slow, but it's probably as it's early days. I also take azilect and 150mg madapor.

I also play alot of tennis to keep moving and definitely feel better the days I play.

It sucks to get this so young, but I guess others get it even younger!

I hope you can find something to help you. If you can find an integrative GP they can help you with all the supplement stuff. neuros just don't want to know!

[Sleeplessparki in reply to Astra7]

Thanks Astra for the comments. Your right the neuros I think are working for big pharma! How much magnesium did you start off taking? Probiotics is something I will start on immediately as it seems it is good for overall health anyway. I remember when I was in the early ‘honeymoon’ days of this disease I wish I could get back to feeling that good again! Best wishes to you

[Astra7 in reply to Sleeplessparki]

Around 500mg Mg.

Very aware I'm in the honeymoon period still believing I'll conquer it! When did it start affecting your life style?

[Sleeplessparki in reply to Astra7]

About 5 years.....it’s been tough the last 2 Years. Oh well....I’m still vertical

[park_bear in reply to Sleeplessparki]

Don't ignore the NAC which has been shown to be helpful.

[Blackfeather]

I would highly recommend that you get your hands on the newly published book The End Of Alzheimer's: The First Program To Prevent And Reverse Cognitive Decline, by Dr. Dale Bredesen. He lays it all out for you, supplements, diet, lifestyle changes etc. I believe everything he proposes applies to treat PD. See his video interviews on youtube.

[alexask in reply to Blackfeather]

Also here is a link to some of his research:

aging-us.com/article/100690...

[Astra7 in reply to alexask]

So interesting. A lot about controlling insulin.

[Sleeplessparki in reply to Blackfeather]

Hi black feather thanks for the input. I will get the book this weekend... I assume it can be ordered on line?

[faridaro]

PD is considered now to be autoimmune disease and according to latest studies the origin of autoimmune diseases lays in the gut, particularly leaky gut which is widespread because of the pesticides, gmo, antibiotics, etc. If gut is dysfunctional, supplements may not get absorbed properly. So, the first best step is to fix gut and the integrative physician would be the best to address it. However, they usually don't take insurance and office visits /lab work can be costly. So, it would be good to try gluten -, dairy- and possibly egg free diet for a few months, because gluten and casein (in dairy ) are the biggest culprits in tearing intestinal mucosal lining. Some people report getting better just on diet alone, although it didnt help in my case but I hope is holding off progression. Of course quality probiotcs are a must!

[Sleeplessparki in reply to faridaro]

Thanks faridaro for sharing your insight. I could probably try gluten free diet....... but would have difficulty giving up eggs...... love them to much. Probiotics will be ordered soon. Where do you purchase yours and which brand do you use and at what quantity?

[faridaro in reply to Sleeplessparki]

Understand about eggs, I loved them too. Now occasionally I buy quail eggs at a local Asian store, mostly for baking as I was found also sensitive to duck eggs, but there was no test for quail eggs

Regarding probiotics - I order them online (Amazon, Vitacost, Pure Formulas, iHerb, etc) Since our bodies need variety of intestinal flora (the more diversity, the better) it's good to rotate different strains and take them before bed with a glass of non-chlorinated water, because chlorine may kill the little "bugs".

Good brands are: Natren Healthy Trinity, Renew Life Probiotics, Pure Encapsulations, Klaire Labs, Jarrow Formulas, Garden of Life RAW probiotics, and lately I am looking into GutPro which have not tried yet but is highly recommended by John Brisson fixyourgut.com/gutpro-recom...

I have to be careful with probiotics because some strains increase histamine and I have genetic issues with histamine clearance.

Regarding quantity - start low and go slow to observe your body reaction. So 1 pill/day for a week in the beginning would be a good start and then you can increase to 2. Everybody is different and people who are immune compromised have to be especially careful.

[alexask]

Parkinson's is a slow-moving disease, so you can try each of these - see whether they work and if they don't don't continue. Most of these supplements are not that expensive. It is also frustratingly individual, so what works for one doesn't work for all. I would start with Mannitol, simply because that has been getting a lot of positive feedback here (it is the one thing I would be loath to give up).

With regards to your neurologist not approving - he may be limited to those treatments approved by Pharma companies who have no motivation to do double-blind tests on vitamins and supplements already cheap and freely available to the public. Ultimately it is your body - you are the one man experiment and if it works for you then good.

One concern I have is how the supplements would interact with your existing medication.

[NancyJHP in reply to alexask]

I agree with alexask, do them one at a time and start with Mannitol. I like Niacin as well. I started with Niacin for a few weeks, then I added Mannitol and in a few weeks I will add something else. Keep a food/medicine diary. Write down everything you eat and drink, including all medications and at what time. Write down when and what time you feel a little different, or nauseated, or have an upset stomach. This can help you figure out if something doesn't agree with you or if two different things give you a bad reaction.

[Sleeplessparki in reply to NancyJHP]

Thanks Nancy I’m going to follow alexask recommendation and will keep record of the trial. Thanks and best wishes to you.

[Sleeplessparki in reply to alexask]

Thanks Alexask for the insight. I agree a baby step approach to supplement use is probably the best approach. I will try mannitol and probiotics to start and go from there. How much mannitol should I begin with? Where do you get it, brand name and do you dissolve it in liquid?

[alexask in reply to Sleeplessparki]

google it - I think you can get it from Amazon in the US (evil corporation that it is). Depends on your weight to an extent. Go for a teaspoon at breakfast ( generally in coffee). Then maybe a bit more throughout the day. Improved sense of smell is usually the first hopeful sign. Good luck. And be optimistic. It has helped many before.

[alexask in reply to Sleeplessparki]

actually I meant a tablespoon at breakfast and continue on from there. Sometimes I take less if I am in awkward situations where the resulting gaseous explosions are too embarrassing. Theoretically you are supposed to get the info from the clinicrowd website, but I have found that website utterly unfathomable. So start with a tablespoon and go on from there.

[Sleeplessparki in reply to alexask]

Does it make you gassy? Thanks for the clearification.

[park_bear in reply to Sleeplessparki]

It sure did for me, overmuch. The "Beano" type remedy is supposed to help which I will use if I ever try again.

[alexask in reply to Sleeplessparki]

Well let's put it this way. If they ever need some real sound effects for the remake of that blazing saddles scene anyone on Mannitol could audition knowing they would get the part.

But so what? Based on the results so far there is a chance this could help you. When I started getting symptoms I thought that my life was effectively over. There would be no pleasure just degradation and a downward spiral. I wouldn't be able to function in my job. I wouldn't even be able to do DIY jobs. I would become a complete burden on my family and society. Mannitol more than anything has completely changed that.

[Sleeplessparki in reply to alexask]

LMAO....... I’m getting it next week.... looking forward to maybe starring in the remake of Blazing Saddles. Lol

[Sleeplessparki in reply to alexask]

Hi alexask, did you have a nice thanksgiving? I’ve been taking the Mannitol for the last 4 mornings and your right! This stuff makes makes you Fart. I haven’t been this gassy since my last colonoscopy lol.

Just curious how long before I notice a difference?

[alexask in reply to Sleeplessparki]

Thanks. I am in the UK, so we don't partake in those colonial celebrations

Hopefully you should start to notice your sense of smell coming back after about 3 weeks. Then other symptoms may start to improve. Parkinson's is frustratingly individual though so there is not guarantee it will work.

[PDConscience]

Here is a comprehensive, reliable (annotated) starting point. It begins with a summary of the disease, a review of conventional options, then (on page 3) a summary of helpful natural/alternative options: lifeextension.com/Protocols...

[moonel60]

Hello there, my name is Robyn, I was dx in 2014 and put on several drugs which all caused terrible side effects, making me really tired and i gain heaps of weight and was always going to doctor feeling awful!

After learning that none of ghe PD meds can cure , or slow ( azalect may help to slow it ) the disease and that all they do is mask the symptoms and give you awful side effects. I was introduced to a natural range of essential oils and suppliments and I slowly weened off the PD meds and went onto do Terra oils and suppliments and I am soo sooo much better!!

My neurologist is open minded and is amazed at how much better I am!

do Terra are a 100% natural product with no awful side effects. Amazing products suitable for everyone not just PD .

My neurologist said that eventually all PD meds dont work as effectively and you end up having to take more and more doses and more and more drugs!!!! NO Way !

Drugs can be worse than the illness !!

I wish you well , I know how you feel its awful dealing with the illness and then the side effects of drugs!

I have since lost all that excess weight and am feelind great!

Bye for now .. Robyn

[Sleeplessparki in reply to moonel60]

Hi Robyn glad to hear of you weight loss. These drugs are potent toxins that some of us still need unfortunately. Hats off to your neurologist for being open minded, mine is not and believes everything not approved by the fda is BS. I will look into do terra. Thanks for responding it’s really appreciated.

Mark

[park_bear in reply to moonel60]

doTerra has a big selection of products. What specifically has been helpful?

[JohnPepper]

My story is fairly well-known. If you read my profile you will see that I have been able to come off all my Pd medication and have lived, medication-free for the past 15 years. What I do is clearly stated. It is all healthy and costs nothing.

Contact me and will talk you through it.

[PDConscience in reply to JohnPepper]

When hyping the saga of his miraculous “PD reversal", JP routinely fails to mention that his original diagnosis was ‘Essential Tremor’ (a non-parkinsonian condition), that his claims of PD “reversal” have NEVER been supported by a single qualified neurologist (N.Doidge is a psychiatrist who writes books), that he has never had a positive response to Sinemet - the 'levodopa challenge' - further indicating a NON-parkinsonian condition, and, despite writing a book on the subject and obsessively hyping fast-walking “PD reversal”, continues to stubbornly dodge the commonly available means to definitively confirm an actual parkinsonian condition (DaTscan).

And, with his ET being 8 times more common than PD, incessant claims of “PD reversal” remain HIGHLY dubious and help no one. Until JP presents the results of a positive DaTscan (indicating a genuine parkinsonian condition), a healthy dose of skepticism is the best medicine.

[JohnPepper in reply to PDConscience]

To the best of my knowledge, even a DaTscan is not 100% conclusive. If you are prepared to pay te cost of having a DaTscan done on me, I will submit to it with the greatest of pleasure.

[PDConscience in reply to JohnPepper]

A DaTscan will distinguish a genuine parkinsonian condition from a non-parkinsonian condition (eg. Essential Tremor) by the imaging of the striatal dopaminergic system.

Someone who can hustle the financing of regular travel around the world to preach about a miraculous fast-walking PD "reversal" formula can certainly afford the simple test that will prove himself to be something other than a lowly huckster.

[JohnPepper in reply to PDConscience]

To the best of my knowledge, having made inquiries, there is no facility here in South Africa do have a DaTscan. I would have to go overseas to have one done.

My overseas trips all produce very positive results and are money well-spent.

If you want to pay for me to have a DaTscan, while I am over there next time, please let me know. After having a DaTscan I am sure you will find some other way of claiming that I don't have Pd.

[Annie11]

I sought out a naturopath who came with glowing references..started on regime of supplements as per her direction and do feel better..sometimes I feel the neurologist have misdiagnosed an anxiety disorder for Parkinson's...that's for another day however....

[laglag in reply to Annie11]

Hi Annie11. Can you let us know what the supplements are & which ones are working the best? Hopefully you are feeling better?

[Sleeplessparki]

Hi Annie, do you feel any better since taking the supplements? Also how long before you started to feel changes?