He’s Better Than Before DX!!

[Lizzy9]

Hello All and Merry (After) Christmas!! Yes!! My HwP is better than before he was diagnosed!! I will share what has worked for him in the hope that it may help someone else.

First I want to thank all of you who are so willing to help and do so much research, share your information summarizing for those of us who cannot wade through the scientific jargon. Also, thank you for your time!! Thank you for answering questions and for explaining things in more detail!! And some of you don’t even have PD!!!

Here’s a little history ~ My HwP was dx’d 3 years ago shortly before turning 70. His first symptom was a very pronounced tremor. Maybe he had anxiety too, I don’t know.

So for 3 years we have been trying everything I could get information on. He is such a trooper! Now I must say that I am not a doctor and what I am about to share is what is working for my HwP. And as everyone is supposed to say ~ check with your own doctor before trying anything I mention, or try at your own risk.

I am going to share what we are doing now. I am not going to list his entire list of supplements, as is the case with so many here the list is HUGE!!!

SO HERE GOES ~

Bened Life Neuralli PS128 ~ 4 ½ months

um-PEA ~ about 1 ½ months

Homemade Bened Life Neuralli PS-128 Yogurt ~ 2 weeks

Eliminated coffee (all caffeine) ~ several months ago ~ reduced tremor immediately, did not eliminate his tremor!

Tru Niagen 900 mg ~ 1 year 10 months ~cognitive improvements in about 3 weeks after starting

FOR SLEEP ~

Comfort Linen Sheets (bottom sheet only)

Gabapentin ~ prescription, 100 mg

GABA supplement 250 mg

HIS IMPROVEMENTS ~~

Anxiety ~ GONE!

Tremor ~ only slightly and occasionally. (I used to have stroke his leg in the morning anywhere from 20 minutes to 3 hours to get him to calm down and sometimes during the day and every evening while we watched tv, I don't have to do that any more at all!)

Improved facial expression, laughs more, better conversation, talks more.

He sleeps all through the night again. He had about a month of not sleeping well.

NOW here's a list of other things that we do and we have no idea if they are contributing to helping him or helping the above things that we are doing to work ~

B1 ~ sublingual 25 mg 4x a week

Rock Steady Boxing ~ 3x a week

Well Red Helmut ~ morning and evening

Whole body (feet to head) massage every morning ~ only about 20-25 minutes and some evenings for a shorter time.

A SIDE NOTE ~ He has never had any relief taking his C/L (Senemt). So of course his new neurologist, recently had him double his C/L. We see her this week and she will contribute his improvements to the increase of C/L. I guess that’s ok because the she won’t be trying to prescribe more meds.

Oh! One more thing ~ constipation ~ Occasionally he has a problem, but for the most part he’s good. So here is what works for him! ~

DAILY ~ 2 Tablespoons of freshly ground flax seeds with 1 tsp of Black Seeds. (I add the Black Seeds just for nutritional value.)

8oz. glass of Kombucha (homemade)

EVERY NIGHT ~ 210 mg powdered Mag Citrate MIXED with one scoop of Thorne Enteromend Powder, 1 PS128 capsule. (I don’t know if that’s helping with constipation or not, I really doubt it but is definitely improving his symptoms.)

DIET ~

Sugar and alcohol only on holidays and family celebrations

Food is (for the most part) ~ organic, grass-fed, free range

Minimal ~ Gluten and Dairy (I make make my own sourdough bread which is our main bread now and I try to use mostly raw, goat, sheep, and A2A2 dairy.)

Replaced coffee with “Dandy Blend” and cream with Oat Barista Blend by Califia Farms.

My HwP still has PD and there are things that he cannot do. But he is sooooo much better with what we’re doing NOW! Again THANK YOU, THANK YOU, THANK YOU to all of you who research, contribute, answer, explain, and just plain help!!! Because of you I pretty much have my husband back!!!

HAPPY NEW YEAR and GOD BLESS each and everyone of you (and all of us)!!!

Have a fabulous day!!!!

[artinson]

Thank you Lizzy for sharing what you guys do. I really appreciate it. Happy New Year!

[Lizzy9 in reply to artinson]

you’re welcome and God bless you on your journey.

[artinson in reply to Lizzy9]

I'm very happy to hear that your husband is doing better 🙏🏻

[Lizzy9 in reply to artinson]

thank you so much!!!

[JCRO]

That’s a lot of effort. Great job.

You could add luteolin to improve the performance of the umPEA. But then again you could argue you’re both doing just fine as you are!

[Lizzy9 in reply to JCRO]

The one he takes has that in it. But thank you!!

[MBAnderson]

Does he appreciate how lucky he is to have you helping?

[Lizzy9 in reply to MBAnderson]

Yes he does!! At the beginning of this journey he said to me “God gave us each what we could handle. I could not do for you what you do for me and you could not handle what I am going through.” (All the tremor and anxiety.)

We have little “arguments” as to who loves who the most.

Have a wonderful New Year!!! And thank you for your help!!

[MarionP in reply to MBAnderson]

Boy howdy second that!

[park_bear]

Lizzy, thank you very kindly for sharing!

Levodopa is one of the better medications for Parkinson's symptom relief, but it does have downsides which get worse as one increases the dosage. If he does not need it he should not take it. Also, one cannot quit abruptly but should taper slowly.

[Lizzy9 in reply to park_bear]

I’ve thought of that. I guess we will be adamant about discontinuing C/L when we go see her for the 3 month checkup for the increased Rx.

Thank you for your encouragement!!!

Have a fabulous rest of your holiday!!!

[pdpatient]

Thank you for sharing. One thing you may want to take into account is your amazingly positive attitude. It sure can make a difference.

[Lizzy9 in reply to pdpatient]

Thank you for your kind words. I am not in this alone. I trust God and pray ALOT!!

[Hope-full1970]

I'm so happy for you! What a great wife and support you have been for your husband! Congratulations and God bless you and your husband!

[Lizzy9 in reply to Hope-full1970]

Thank you so much!!

Have a fabulous rest of your holiday!!

[Smittybear7]

Thanks for sharing and I hope you have continued success with what you are doing, You are lucky that you both have each other's support.God bless you!

[Lizzy9 in reply to Smittybear7]

Thank you so much!! I am very blessed to have been married all these years to such a wonderful man!!! He is worth everything I can do for him!!

Have a fabulous rest of the holiday!!!

[garygjs]

Thanks, Lizzy.

Your post has prompted me to give PS128 a bash. I've just ordered some for my mum.

Do I have this right? 1.5g of mag citrate every night? That's quite a punchy dose, and possibly giving the kidneys quite a bit of work to do. Tread carefully.

[Lizzy9 in reply to garygjs]

ok, thank you for the heads up. I’ll look into it. Oh, I re-looked at the container. I am wacko. It’s 1.5 Gr in ½ tsp by weight making it only 210 mg of the mag citrate!

Thanks for bringing this to my attention.

Make sure that you give the PS128 time!! Also, which I didn’t mention in my original post is that after about a week of giving my HwP the PS128 yogurt he seemed “better”. Nothing that I could really put my finger on ~ just better ~ maybe clearer look in his eyes, like he was “there”. That may not make sense.

Have a fabulous rest of your holiday and God bless you!!

[ssrs in reply to Lizzy9]

Hi Lizzie,

You and your husband sound so much like my Hwp and myself. Anyway, where do you get the PS128 and how much do you give him per day? We are always looking for new information concerning any supplements/natural products that might be helpful. Also what is umPEA and where do you purchase that?

Thank you!!

Shaunna

[Lizzy9 in reply to ssrs]

Hello Shaunna! Yes, I am constantly looking for natural ways to combat this disease also!!

From the website. I started him on 2 caps at bedtime as the website recommends. Now that I’m making yogurt I give him approximately one cup of yogurt daily And I still give him one capsule at night. I have no idea if/when we will change this.

benedlife.com/PS128

Um-PEA ~ Amazon . Wow! What a huge link! I hope it works, if it doesn’t search for “Gold Health um PEA”. Right now from a PWP in England ~ we’re doing what he’s doing/did ~ I give my HwP 2 in a.m. and 2 in p.m. I’ll drop it down to only one in the a.m. after 3 months.

amazon.com/Palmitoylethanol...

Someone here on HU posted this blog. (I am sorry that I cannot remember who did, but THANK YOU so much!!!)

journeywithparkinsons.com/2...

And here’s a link from iHerb’s site

iherb.com/blog/a-quick-guid...

I hope this helps you on your journey!

God bless and have a FABULOUS New Year!

[ssrs in reply to Lizzy9]

Thank you Lizzy for sharing your information!! Hope you have a Happy New Year!

Thanks!

Shaunna

[Lizzy9 in reply to ssrs]

You’re welcome and blessings to you in the New Year!!

[Reetpetitio in reply to Lizzy9]

Lizzy this is such an inspiring post, thank you! Do you think you might edit to add the corrected info about the magnesium dosage? Just in case someone doesn't read the thread! 🥰Really looking forward to checking out your recommendations!

[Lizzy9 in reply to Reetpetitio]

Thank you for suggesting to edit this post so I just did!!!

[LAJ12345]

great to hear! What brand of umPEA with luteolin do you use?

[Lizzy9 in reply to LAJ12345]

Gold Health PEA from Amazon

amazon.com/Palmitoylethanol...

[LAJ12345 in reply to Lizzy9]

Thanks. I will give it a try. He used to take it a while back but it got too expensive from the naturopath.

[Lizzy9 in reply to LAJ12345]

You’re welcome. Blessings.

[MarionP]

Truly remarkable and you deserve a ton of credit for all the work and perseverance and keeping your cool and balance through all of the twists and turns. Really wonderful!

[Lizzy9 in reply to MarionP]

You are too kind!! I have been a wreck at times!!! And I get sooooo much help from soooooo many very smart people here on HU!!!! And God has blessed us abundantly!!

God bless you and have a FABULOUS New Year!,

[ssrs]

Hi Lizzie,

My Hwp was diagnosed in June 2020. We had suspected he had Parkinson’s for several years before the official diagnoses. After his diagnoses in June 2020 we started him on macuna and started the B1 which he takes 3grams per day. The B1 in my opinion and his has helped his energy level and like you said the facial masking. By Dec 2020, I personally think due to the stress of the pandemic lockdowns and various other things going on my husband started declining within a matter of two weeks he was unable to raise his arms to feed himself, he couldn’t roll over in bed, etc….

I started calling a neurologist to schedule an appointment. The earliest they could get him in was Jan 29th. I felt there was no way he could live that long without being seen so I said that is good but I will call you every day to see if you have any cancellations. I called every day for one week when the Dr. said we will work him in. He was put on Sinemet which we were absolutely trying to avoid but at that point he had to have something. The next day after starting the Sinemet he was able to raise his arms, and he was back to normal within a week. He did great on Sinemet until this year. He has just now been given Rytary which he has much less downtime than he did with Sinemet. He also takes many different supplements so reading about your husbands protocol is very interesting.

So is there a difference between the:

Bened Life Neuralli PS128 ~ 4 ½ months

Homemade Bened Life Neuralli PS-128 Yogurt ~ 2 weeks

Do you have the recipe for the PS-128 yogurt?

Thank you!!

Shaunna

[Leopardgirl in reply to ssrs]

Thank you for sharing. Great to hear about thd improvement. May I ask what symptoms the Macuna helped the most and did you try the sublingual B1 at any point? Thanks

[Lizzy9 in reply to ssrs]

You know, I really have no idea. Some people here, from my understanding, only take PS128 in yogurt. I do feel like after I added the yogurt and decreased the pill to one that he got “better”. Nothing huge, just a slight change (for the better) in his facial expression ~ a look in his eye that seemed to be more “here” and better “cognition”. It’s hard to explain and it isn’t anything that anyone else would notice or anything that I can measure. So, who knows for sure? It could just be me wanting him back totally non-PD.

God bless you and have a FABULOUS New Year!!

[flyboypiper]

Where do you get the um-PEA from? I have the PS-128 on order.

[Lizzy9 in reply to flyboypiper]

Amazon ~ Gold Health PEA

amazon.com/Palmitoylethanol...

[Millbrook]

Hi Lizzy

So wonderful to hear the happiness in your post. I am so glad all those things have helped you as it has helped my husband.

Maybe I will go back to making the PS128 yoghurt again to increase the amount . My husband diligently takes the PS 128 sachets nightly and does the redlight. I recently added the PEA as well.

Thank you for sharing.

[Lizzy9 in reply to Millbrook]

You’re welcome come and blessings!

[LindaP50]

Fantastic for you both! Lots of hard work and thought put into his care.

My hubby had a hard time adjusting to a different diet - a keto paleo combo. Didn't last long. Did gluten free for 3 years. Now I just try and have a veggie night, a fish night, and so on. Minimal to no processed foods as best we can. Limit sugar intake.

Bravo to you. Takes a lot of effort and love.

[Lizzy9 in reply to LindaP50]

I haven’t been able to pull off keto. I would need a Keto Coach! So good for you for at least trying it out!

We just try to keep the “questionable” foods at a minimum. But sometimes I do fall off the bandwagon. But we can always get going again ~ tomorrow!!!

God bless and have a FABULOUS New Year!!

[Fumaniron]

Fantastic! It’s great that you are such a curious, diligent advocate for your husband

[Lizzy9 in reply to Fumaniron]

Thank you for your kind words!! It’s “easy” for me because he has been such a kind and wonderful man to be married to all these years (well, most of them!! ~ 52).

God bless and have a FABULOUS New Year!!!

[Rubiron]

so pleased for you both and wonderful to hear your story. My husband has been diagnosed a similar time and we are trying to keep things natural at the moment and not going down the prescribed drug route. I am very interested in the PS128 that you mention. We are in the UK, does anyone know where we could obtain that here? Best wishes, and Happy New Year to all!

[Lizzy9 in reply to Rubiron]

Or even “PS128 yogurt”

[Lizzy9]

You can search HU. Try putting in the search bar PSA128 and/or L-Plantarum. There are lots of people here that are far more knowledgeable than me and can help you!! And some are in Europe.

[Lizzy9]

I just got to thinking ~ I wonder how much the massages are helping him? He says they really relax him. So I guess maybe it helps him get on with the day. And being in a more relaxed state both physically and mentally could be helping the supplements help to work.(? ~ Again, who knows?). Also, it has been proven that babies do NOT thrive without “touch”. I have no idea ~ just some mind wanderings.

Last summer I did purchase a massage table because I needed it!! When we do the massage I put on some of my favorite soft and soothing Christian music. That helps me give a better massage and hopefully helps him to relax more.

When I give him a massage I start out with a little lymph massage. You can do a web search on YouTube if you’re not sure what to do or what that is. He was having a slight swelling in his feet in the evenings so I incorporated a little lymph massage and I haven’t noticed the swelling any more. I have to admit that I do forget to check. But then I wasn’t checking before either.

Just some thoughts and considerations!!!

God bless and have a FABULOUS week!!

[gomelgo in reply to Lizzy9]

I have been saying to my two body work folks that I know for certain that if I had body work done very day, I would be healed. When I read that you do that every day, I was envious, and at the same time certain that the massage is a HUGE factor if not the main one. You are an amazing example of what is possible. Now if only I could find myself a partner like you.

[Lizzy9 in reply to gomelgo]

You are too kind. I am so sorry that you are unable to get the body work that you need. My hope and prayer is that you can find someone to help you. And like you I cannot help but think that the little massage I give my HwP is a contributing factor to how well he’s doing/responding to what we’re doing now. If so, it has taken several months to help. Everything takes time!!!

Gos bless and have a fabulous week!

[Lizzy9]

please note to some of you ~ at a suggestion I just edited this post regarding the Mag Citrate. He actually takes 210 mg nightly NOT 1 ½ grams.

[Turnipbarrow]

so happy to hear good news,! Can you post the yogurt recipe? I think I would like to try it. Happy new year!

[Lizzy9 in reply to Turnipbarrow]

My recipe is 2qts. A2A2 milk and 2 caps of Bened Life Neuralli or instead of 2 caps only 1 cap with ½ cup of previous batch. It is kind of runny like kefir.

Let me know if you need the instructions for Instant Pot.

[Turnipbarrow in reply to Lizzy9]

Do you think it can be made with coconut milk.? He is dairy free. Also can you send instructions for insta pot. I’ve never made yogurt. Thsnk you so much!

[Lizzy9 in reply to Turnipbarrow]

I have not idea if this yogurt can be made with any nondairy milk or not. I am very, very new to making yogurt and that is why mine is like kefir and I’m not going to spend time trying to perfect it since it seems to be working as is.

Here is a link to the instructions that I used for Instant Pot yogurt ~

simplyrecipes.com/recipes/i...

God bless and have a fabulous day!!

[cceelen]

Thank you for the yogurt recipe, I will try it tomorrow!

Be careful with the C/L. It's easy to get hooked, hard to step away from. I've just spent the past 7 months slowly lowering my dose. I never would have started had I known more.

There is an informative free online book on the topic "Once Upon a Pill" pdrecovery.org/once-upon-a-...

[Lizzy9 in reply to cceelen]

Thank you for your information and link!!! I have soooo much reading to do right now!!!

My HwP admitted to me that he’s afraid to go off his C/L because he’s afraid that he’ll get back to how he was 3 years ago ~ which was indescribably horrible.

But he is willing to try. I’ll read this book to see how to safely get him off anyway. I guess he just doesn’t understand the problems of these meds. Fortunately he will read the side affects of some of these and decide on his own to decline taking them.

We see his neurologist tomorrow. If she refuses to help us with this I guess we’ll be looking for our 4th neurologist!

Thank you again for your information and have a fabulous day!!!

[cceelen in reply to Lizzy9]

If he was recently on a lower dose, maybe he could slowly go back to that. The book recommends being on the lowest dose possible, then it will be a longer time before side effects start becoming bad. The answer most neurologists have always seems to be more meds!

Good luck!

I'm getting ready to add the starter to my first batch of Parkinson's yogurt! Thanks again for the recipe!

[Lizzy9 in reply to cceelen]

I agree, some (most) neurologists do want to increase meds and I think the one we’re seeing now may fall into that group. If so, we’ll be on a search for another one. I just don’t want one that is 2 hours away and that could be the case.

I am going to insist that we either get him totally off or at the very least to a reduce dose. So we’ll see…..

Have fun and good luck with you PD Yogurt and thank you for your information and thoughts!!!

Blessings and have a fabulous weekend!!

[cceelen in reply to Lizzy9]

Good luch with the neurologist.

The PD yogurt is excellent! Better tasting than "regular"' yogurt in MHO. I made mine in Mason jars, on a rack in my InstaPot. Bathed in water, up to the level of the yogurt in the jars. Mine firmed-up well. I used 100% grass fed, whole milk. Thanks for this wonderful idea!

[Lizzy9 in reply to cceelen]

oh, don’t thank me. Thank the many people here on HU who share their information and help us all!!!

Neurologist visit went well.

Blessings and Have a Happy New Year!!

[Lizzy9 in reply to cceelen]

I think there is some good information here, but this information is over 20 years old. I wonder what other “findings” are out there? (Just a thought.)

[cceelen in reply to Lizzy9]

There is no new research in this direction that I'm aware of. Absolutely no financial incentive for helping people get off this type of drug.

[6daniparky]

Grazie Lizzy! Cari auguri di Buon Anno!

[Lizzy9]

Thank you for your comment even though I only speak English.

Have a fabulous day!

[PDHomeo]

Thank you Lizzy - this is very inspiring. I am going to start some of the items that you mention as it seems as if you have hit on some successful strategies.

[Lizzy9 in reply to PDHomeo]

All I can say is this is what’s helping now. We don’t know about tomorrow….

I wish you the very, very best and hope and pray that you do get some relief and help.

God bless and have a fabulous day!!

[PDHomeo]

How did you decide on a dose of 900 mg for the Tru Niagen? I see 300mg usually recommended.

[Lizzy9 in reply to PDHomeo]

There are other members here on HU that I followed what they were doing. You could probably do search on HU to see what/why others are doing with it. Also, if I remember correctly, at the time I was looking into this there were several TryNiagen people that were taking 900 mg. Plus my readings (whatever they were at the time) seemed to support increase of this type of B3. So make sure you do your research!!!

[Lizzy9 in reply to PDHomeo]

One more thing ~ we do occasionally skip a day of supplements. And there have been times when I’d kind of get scared that I was giving him too much so I’d drop it down to 300 mg or 600mg or even take a short break.

(I'm not very scientific.)

[PDHomeo]

I occasionally skip a day also. I am currently reviewing my supplement regime and making some changes - requires lots of research!!!! Thank you for sharing.

[Lizzy9 in reply to PDHomeo]

You’re welcome!!

Have fun with your review!!

[PDHomeo]

One more question if you dont mind: what brand of um-PEA do you use? Thanks!

[Lizzy9 in reply to PDHomeo]

I’ll send you a link to a blog later. Also Boltupright has a link to this PEA.

Amazon ~ Gold Health Pea

amazon.com/Palmitoylethanol...

[JCRO in reply to PDHomeo]

I can’t speak for Lizzy9 but the Um-PEA brand I use is Normast 600mg. Made in Italy. I’ve had excellent service so far.

[Lizzy9 in reply to JCRO]

Thank you for another option!!!

Have a fabulous evening!!

[Millbrook]

Rosmolo 1500 MG Palmitoylethanolamide with Luteolin 98% & Turmeric, High Absorption, Micronized Pea Supplement for Discomfort Management- USA Made - 60 Tablets a.co/d/gu8MQny

[Lizzy9]

Thank you for sharing this one also!!! Looks like it might be a little more economical!!

Thank you again, blessings and have a fabulous weekend!,