HELP: I never thought I would say this... - Parkinson's Movement

Parkinson's Movement

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HELP

Stevenmast
Stevenmast

I never thought I would say this but I feel like I'm losing this battle! Wife wants a divorce! kids don't get it! mucuna not as effective as it used to be. I have been off vitamin B1 for a few months. I ran out and thought I just give it a rest. I'll reorder more tomorrow I guess. Couple of weeks ago I had a day where I felt almost normal. The next day back to my misery! If we could only figure out why some days although not many days this disease is not so bad. Not to knock the stress from covid! I think it's time to see the neurologist! Can anyone of you Beautiful People Help me with any suggestions?

128 Replies

Sorry I know what you mean some days are better than others.

You will start feeling better, as soon as you get on your B1 regiment and your sinemet regiment. Way better than makuna. I know how hard it is to see a neurologist. So make an appointment with your GP, he can give you prescription for sinemet and direct you to a dosage. I would use Carbidopa / levodopa CR which is a continuous release and does not give you an upset stomach. If you can go to a health food store you can buy thiamine HCL right away. Best of luck.

Stevenmast
Stevenmast in reply to parkie13

Mucuna doesn't make me nauseous anymore I'm over that it works pretty well it's just that I'm progressing. I will definitely start taking the B1 again. 4 years ago I was given a bottle of 25 100 Carbidopa levodopa I didn't use many so I tried some because the powder is getting to me. But I had to take two and I still didn't give enough equal to the mucuna. Mucuna is only giving me 3 hours sometimes four but when I come off of it I'm shaking for a couple hours and then I settle down. Thank you for your feedback I appreciate it! I agree with you it's time to see the neurologist and maybe try something different ugh!

parkie13
parkie13 in reply to Stevenmast

It has been eight years since diagnosis of Parkinson's. I really fought taking sinemet tooth-and-nail and I went with mucuna pruriens for quite a while. It got to the point where I would have a constant diarrhea from taking the powder. I also tried the Marty Heinz protocol. It was very difficult, at the time it did work okay. Now, I am using sinemet more often, it's six times a day, and I have to take one during the night too or I would be shaking. Also, I am splitting the 7th dose into 2 and adding it in middle of a day, twice, to two different doses. The macuna never made me nauseous but c/l IR immediate release did.

I'm taking

25/100 carbedopa/levodopa CR a generic

Stevenmast
Stevenmast in reply to parkie13

Yes I agree it might be time to make a change. I had a good run! Thank you!

laglag
laglag in reply to Stevenmast

Try rocksteadyboxing.org It really helps.

Osidge
Osidge in reply to Stevenmast

You may also want to ask your neurologist about dealing with the stresses of dealing with PD in the light of your family issues. Stresses like you mention are quite likely to have a negative effect on your PD.

My husband was doing well on just the mucuna and B1 until Dec 2020. In a matter of weeks he was unable to feed himself, turn over in bed, and was only able to sleep 30-60 min at a time. By Dec 17th he was totally dependent on me for everything. He was so weak, I thought he wasn’t going to make it until his first neurologist appt which was scheduled for Jan 29th. I started calling the neurologist every day asking if they had any cancellations since he was getting so weak. They worked him in the 3rd time I called. We went in that day and they put him on sinemet. He is still taking the B1 along with the sinemet per the Dr. Within a few days we noticed he was getting his strength back. He is doing so well now. Back to driving, walking, exercising, etc...

Have you tried sinemet? I personally think the stress of the last few months is what affected my husband a great deal. Just like you mentioned that in your message above.

Stevenmast
Stevenmast in reply to ssrs

Very interesting thank you! I was put on sinemet four five years ago I only used it for a few months then I started mucuna. I still have a bottle of it and I have been using it but I need two pills and I still don't get the same relief perhaps there's an expiration date? As you mentioned it's been tough times and the stress is killing me. I believe my biggest issue is not sleeping. It's time to see the neurologist perhaps try some different dosing of sinemet. I had a pretty good run with the mucuna Perhaps it is time to make a change. Thanks a lot appreciate the help!

ParlePark
ParlePark in reply to Stevenmast

I don’t know if legal where u live but I use 1:1 thc/cbd and really helps me sleep. Went on c/l 6 months ago, starting at 1.5 every 4 hours. Helped considerably.

My Advise.. fwiw.. don’t read the news.

Stevenmast
Stevenmast in reply to ParlePark

I will give the THC CBD a try. And yes I will stop reading fake news! Sound Advice LOL thanks!

ParlePark
ParlePark in reply to Stevenmast

Careful with dosage. Only need a little for sleep. I use sublingual drops and take 30-45 minutes prior to bed. I also use 10 mg of melatonin when required.

Stevenmast
Stevenmast in reply to ParlePark

Thank you I'll try that dosage I have a license to get it I just haven't done it. Thank you for your help

If you have not read Chartist's postings on Melatonin, I recommend them. I'm getting very good sleep patterns now, best tip is to start with a small dose 1/2 hr ahead of when you want to get to sleep and then the rest of the doseage.

Manypony
Manypony in reply to ParlePark

I agree, I used more than needed for awhile, less can be better

rescuema
rescuema in reply to Stevenmast

"the stress is killing me. I believe my biggest issue is not sleeping."

Yes and Yes. Those are your biggest issues that you need to get a handle on somehow. I monitor my glucose and those two factors directly and immediately contribute to insulin resistance and inflammation. Exercise always helps to counter stress. Stress also depletes magnesium, so if you haven't lately, be sure to supplement - try L-threonate near bedtime. Easier said than done, but your wife probably also needs a bit of hand-holding from her husband so try to work it out to the best of your ability.

Stevenmast
Stevenmast in reply to rescuema

Thank you!

PEB69
PEB69 in reply to Stevenmast

Check the expiry date on those old pills, probably get a new prescription filled to be safe. Surely your GP can prescribe them for you? I’m in NZ and once diagnosed they can continue prescribing, no need to wait for a neuro appointment. Also have you done much reading in some of the recent posts about the difference between actual mucuna and say nutrivita which is an extract with none of the goodies from the mucuna except l dopa.? My husband couldn’t tolerate the nutrivita and yes the % in the Tattvas is low but hey it works especially with just a half sinemet to help it get through and give him a bit extra l dopa. Maybe look at changing to mucuna. Don’t feel alone, you have the HU team here :)

Stevenmast
Stevenmast in reply to PEB69

so tattvas is the whole Bean or some of the other compounds in it? How long is your husband had Parkinson's can you recommend where I can buy that? Thanks for your help!

PEB69
PEB69 in reply to Stevenmast

Hi Steven below is the link to their site. We buy online and ship to NZ (they are a USA company).On their site somewhere there are info/vids where they talk about how they process and extract their supplements, CO2 extractions and PSE extractions and also raw herb in the mix too. We buy six bottles at a time which lasts so far 60 days per bottle, he usually has 1x twice daily with half a sinemet, sometimes he has a dose in between by itself. After reading some comments here and watching the Mischely vid he may add lemon juice too. Husband has been diagnosed late 2015 but signs since 2010 and even a decade earlier I think when I think about very early subtle signs like night terrors and pinky finger twitching.

tattvasherbs.com/organic-mu...

Stevenmast
Stevenmast in reply to PEB69

Thank you!

ssrs
ssrs in reply to Stevenmast

Yes, the sinemet may not be working as well if it is expired or close to expiring. My husband started on the 25-100 mg half tab 4 x per day. Each week it has increased gradually to 1 1/2 tab 4 x day. I would definitely see about getting on the Sinemet. The lack of sleep was definitely a major issue. Also like you said we really try to avoid the fake news but it is getting more difficult to find the legit news sources. If you don’t mind we will keep you and your family in our prayers. Also we are glad you are back on here, we had been worried wondering how you were doing.

Stevenmast
Stevenmast in reply to ssrs

I didn't think anybody realized I hadn't been on the forum. On this forum I have experienced nothing but wonderful people giving great advice! I'm a very grateful for it. Today I think I'll look in the mirror take a deep breath and get back to the basics and do the things that I know work. Thank you!

I'm so sorry...I wish I could help you. You've been so generous in helping me, and others in the past. It seems that you need some peace and quiet to sort things out. Parkinson's is a goldmine of anxiety that we do not create, it's always there, it's like always walking on the edge of the Grand Canyon, constant "edginess". Can you up your MP ??Can you get any relaxation time ? Maybe try a combo of alternative & traditional meds with a holistic doctor ? I realize these are simplistic solutions, but somehow I sense your need for quiet thinking time.

Don't worry about our new President, he really is a good man, been through tough times too.

Actually I've had some sinemet left over from years ago so I've been mixing in a little. They are 25 100 and two of them it's not quite doing it anymore at least not enough. I'm going to get back on the B1 continue the mucuna until I get to my neurologist. I believe you are right about stress it's causing all of this to be worse. I could use a little quiet time! I have not been sleeping and we all know what that does. Thank you so much for reaching out!

Sorry to hear how things are for you and how your family are reacting. Maybe your wife could benefit from counselling as I am sure she is mourning the loss of how her husband once was and has fear for the future. Therapy may help her and she may decide that divorce wasn’t actually what she wanted once she can work through things. My husband is around the same age and stage of PD as yourself and I do feel there are some bad things I want to blurt out sometimes but I focus on the good things and tend to counsel myself, we also have a good honest conversation every now and then., from both sides.Things are good at the moment and hey one of us may get hit by a truck tomorrow so I think PD is not necessarily the worse thing that can happen to you. It is also hard trying to keep up with a natural regime of supplements etc and sometimes things need to be simplified. It is not the end of the world to give pharma meds a trial either, especially if your quality of life is being affected which I think it is for you, especially with regards to your family dynamics. You may not realise it but you may be in a slump mood wise dealing with it all, your natural protocol, excercise, work, marriage, kids, COVID, politics and I’m sure there are other things too. It’s bloody hard work especially doing it yourself . Many members say their mood is lifted when they start meds and this enables them to do more and get out of that slump. Yeah my husband has a natural protocol too, he uses 1x tattvas mucuna with half a sinemet twice daily as his main PD relief , and b1 amongst other things. Maybe enlisting help from a neurologist and trialling sinemet for example will lift the burden a bit as you will now have someone else helping you out, and you know there’s enough info on HU to enable you to blend pharma with your natural protocol, you may even be able to drop some of them which will simplify things for you. Hope things improve for you. Good luck.

Stevenmast
Stevenmast in reply to PEB69

All good advice! Thank you very much! Tonight my wife decided to be nice and that's all it took at least for one night. Thanks again!

Don't worry about the things you can not control (like who is the president). Regarding your partner I know what that means, but again, you are the single one who can help you. For the children I assume they are minors and do not realize. I'm lucky I have a very good son who cares about me a lot being grateful for what I have done for him.

Try to keep the stress low as much as you can. And if your wife is abandoning you then it is not worth to get stressed for her leaving. I went through that and now I'm okay.

I take 3-4x100/25 C/L pills a day plus 500mg B1; I started with 2g in March 2018, 1 g and now 1/2 g and the single symptom I have is a mild RH tremor.

I decided to go for FUS to get rid of that tremor.

Sometimes the life seems to have a dead end but if you are able to do the right turn you'll get to the right path again.

Good luck!

Stevenmast
Stevenmast in reply to ion_ion

Five years ago it would have been little easier for me it'll never be a good time I just need to take the leap. It's just a little scary at the moment. The truth is I'm pretty much alone right now. Thank you!

ion_ion
ion_ion in reply to Stevenmast

I'm alone, too, but I got used to it. Still I talk daily with my son. But I keep myself busy. I'm still working and try to keep my mind empty of crap.

As Despe said, I take also vit C, D3 and Magnesium. I have myself 5 years of PD, too, and now I feel better than few years ago.

Stevenmast
Stevenmast in reply to ion_ion

Perhaps I will take a different approach and try to embrace it. Thank you!

Have you thought of combining MP + Sinemet? My husband does it and it really works great. Add some Vitamin C with this combo.

ssrs
ssrs in reply to Despe

We weren’t for sure about whether to have my husband continue with the Mucuna while taking the sinemet. We have a call into the Dr. but haven’t heard back yet. Sounds like maybe we can continue it though...

Despe
Despe in reply to ssrs

Husband's MDS told us it is fine to combine MP with Sinemet. He takes 1/2 t Sinemet with two NOW MP capsules X 3/day. Actually he opens the capsules and puts them in coffee and takes Sinemet with his coffee.

ssrs
ssrs in reply to Despe

Good info, I’ll let my husband know that we can keep on with the Mucuna. I need to mention to my husband about taking his sinemet with coffee. I keep forgetting to tell him😊. Thanks again for your response!

Shaunna

Despe
Despe in reply to ssrs

You are welcome. Hope it will work for your husband, too.

Stevenmast
Stevenmast in reply to ssrs

I wouldn't take them at the same time more like an in-between thing

Good luck getting the answer from your doctor let me know what he says! LOL

Stevenmast
Stevenmast in reply to Despe

My mindset has always been not to take too much so I haven't but perhaps the answer is combining see if things get a little smoother. Thanks! By the way, is that a Maltese? I have one that's why I asked

Despe
Despe in reply to Stevenmast

Whatever works, Steven! The combination seems to do the trick for my husband.

My dog is a toy poodle, very smart. :)

Steven, sorry to hear about your trials - as the old saying goes "when it rains, it pours"... And what I find with PD my threshold of resilience to stress is getting very low, even though I try to tell myself - "and this shall pass too". What helps me the most in times of feeling overwhelmed is Rhodiola Rosea and Lithium Orotate (5-20mg) along with the Insight Timer App which provides a plethora of meditation/relaxation/binaural beats brainwave music which calm the mind and help reduce anxiety.

All of us at times need a break from the uncertainty and craziness of the world and the best way to do it is by mastering ability to live in the moment - to be in the "now" instead of past or future. I know this is easier said then done, have to work on it myself really hard...

Hope things get better soon, keep us posted!

Stevenmast
Stevenmast in reply to faridaro

I have been wanting to try lithium orotate but I was a little leery not knowing much about it. What does it do for you exactly? Side effects?

faridaro
faridaro in reply to Stevenmast

For me it has calming effect and stabilizes my mood. Here is Dr. Mischley's thesis work on Lithium Orotate digital.lib.washington.edu/...

And this is another article

jeffreydachmd.com/2015/12/l...

I took only Mucuna for 3 years. Now I take the same Mucuna dose with 1/2 sinemet and it’s working. 4x per day every 6 hours. And don’t forget about exercise. As much as you can tolerate. Very important. As is good quality sleep. Whatever you have to do to get 8 hours. Must do. Finally, Stress Reduction. Ultimately it’s your choice whether to go to Facebook and partake in the craziness or go to Insight Timer or Sounds True. You can’t do anything about the political turmoil, so focus on what you can control. That is your Self. I practice Qi Gong and other martial arts, and get my inspiration from the 12 steps. Giving it up to higher power is step 1. We’re here to serve others and do God’s will. When you recognize that, every day walking on this earth is a good day.

i was the caregiver for my husband before he died. It was the hardest, saddest job I have ever had. He was angry all the time, he didn't listen to me, he was wrapped up in his misery and didn't see how the kids and I were suffering. Give your wife a break, she still loves you, she just can't stand being hated because you need her help.

Thank you fir being so kiind in ur hubbys time of trial. So nice to hear ustuck by him.

We were married for 58 years, the last few years weren't his fault and I loved him.

Bless you both🙏

Thanks; i wish you the best in your long journey.

Fortunately I don't need her help yet just her love which has been missing. The kids are a different story they just want a father I got so wrapped up in myself I didn't realize I wasn't not paying enough attention to them. I'm determined to fix it but it's not easy. Thank you!

I hope you work it out. I got constantly criticized and told, "We need to talk" because he felt I should try harder to get along with him. It was fine if he wasn't trying to find something that wasn't there. We got along fine when he wasn't worrying about not getting along. I spent years letting him do his own thing being wrapped up in whatever it was at the time and I learned to live with it. Then I was "needed." Try it and good luck! I know it is awfully hard when you are miserable.🤣

PS. We had 4 kids, all graduated from college and have done well. Their father didn't pay a huge amount of attention to them. He expected the best from them, not in a "You have to do it my way," but believed in them. They pleased him because they wanted to and it worked out well.

Take the sinamet you have and chew it before washing down with water. Avoid protein and food before taking it. You’ll feel better soon.

Stevenmast
Stevenmast in reply to Astra7

Yummy? LOL Never thought of that thanks I'll give it a try

The problem with PWP is they think its alright to keep living the life they formerly did, the truth is we can't.The Parkinsons keeps us on the edge because of the way the disease affects us, so my advice is to simplify your life where you can and de-stress where you can otherwise you will implode.

Don't worry about which wanker is to be president or which wanker will follow this one or the other self serving wanker that was before.

I'm not in the USA and I think politicians are a disease, so get some happy Steven back and try where you can to get rid of angry/upset Steven. Easier said than do but start exercising.... regularly, start eating and drinking cleanly, don't allow bad thoughts in and try to mitigate them from building up In your head.

I realise this is hard with your family situation but the little things that get better turn into bigger things.

The issue i find with men these days is we tend to look back and see what we used to do or were able to do and that is depressive, and we tend to sook about what we have lost, we need to stop that and look forward and work with what we have.

Oh yeah TURN OFF THE TV, its shit. read books do sodukus get the grey matter in between your ears working. Your mood and out look will increase.

I was starting to get more symptoms to reappear even though I was still doing weights every day in the gym, I added bike riding a week ago and my world changed over night, im not shaking im nor as stiff in my arm and overall im moving better, my point is before you take b1 and all the other 40 billion supplements people recommend get some exercise into your self first. You do all that and try to get some happy back Into your life and your wife will help you, I bet my left nut on that but its up to you friend

jeeves19
jeeves19 in reply to AaronS

Nice post Aaron

AaronS
AaronS in reply to jeeves19

Thanks brother

Stevenmast
Stevenmast in reply to AaronS

Thank you Aaron! I've always been a happy person I think I just lost my way! Got a little overwhelmed and I hate to admit but I stopped exercising. I will put myself back on the hiking trails and I suspect things will get better. Thank you for advice! Steven

AaronS
AaronS in reply to Stevenmast

Best wishes Steven

Trailing
Trailing in reply to Stevenmast

Stevenmast exercise is the best thing you can do for your Parkinson's. So as long as you can, keep moving. And being a wife of one who has Parkinson's I can say it is very hard on us. My husband and I always enjoyed hiking and my saddest moment since he has developed Parkinson's was when he could no longer hike on our favorite trail and it brought me to tears. You say you want her love. I of course I don't know your situation. But it is helpful to me when my husband tells me how much he appreciates me.

Recently he has added physical therapy to his regimen and it has helped him and me as he would not take my advice but now realizes that it was good advice.

I will pray for your situation it is especially difficult these days. Enjoy your children (don't ignore them) and the little things in life like a hot shower, a day of sunshine, nature walks, and laughing more. Start taking lithium orotate it will help. Both my husband and I take 5 mg first thing in morning and last thing at night. It gently changes how you respond to things. It has helped me with anxiety. Be sure it is the natural form of lithium orotate. I use Pure Formula brand which is organic lithium orotate.

Stevenmast
Stevenmast in reply to Trailing

thank you!

Stevenmast
Stevenmast in reply to Trailing

I'm having trouble finding the brand you reference for lithium orotate. The pure formula brand I found doesn't seem to be organic so I am questioning whether it's the right one. Could you possibly send me a link? Much appreciated! Steven

Trailing
Trailing in reply to Stevenmast

Sorry, the brand name is Priority One and I purchase it from Pure Formulas. It says Organic Lithium on the front with (Orotate) specified underneath. It has no organic certification label but is suppose to be organic you can check out Priority One's website and blog for how their testing for purity etc. is done.

Stevenmast
Stevenmast in reply to Trailing

Thank you!

so sorry about your non support people. My husband has had pd for 14 years and has good and bad days for no apparent reason. See a neurologist soon. Find a support group online like verywellhealth.com/best-par... best wishes

I cannot promise that what I do will help you. We are all different.

What I do does not cost anything, so what have you got to lose if you try it?

My first Pd symptom started in 1963 I was only diagnosed in 1992, and in 1994, because nothing else helped, including the latest medication, I started a program doing Fast walking. After eight years of the fast walking and making some important lifestyle changes, I was free of most of my movement symptoms and have been off all Pd medication since 2002. I have lived a normal life since then, but I have to continue doing the fast walking. I am now 86 years old and have had other health problems that stopped me fast walking two years ago, but I have been walking for the past 3 months and am now back to walking 5 kilometres in 50 minutes, which isn't bad for my age.

If you want to know more then contact me at johnpepper@telkomsa.net,

Despe
Despe in reply to JohnPepper

John,

You have my utmost respect and admiration!

JohnPepper
JohnPepper in reply to Despe

Thanks

First of all focus on saving your marriage. Or if it can't be saved move on and just watch this guys channel: youtube.com/user/Entreprene...

Stress and lack of sleep will be very bad for your PD. Have you tried Mannitol previously? And you taking Melatonin ( I am taking 10 mg) ?

Stevenmast
Stevenmast in reply to alexask

I've used Mannitol in the past but I don't now same as melatonin. I'm going to start using melatonin again but what do you feel the Mannitol does for you? Thanks for your help!

pdpatient
pdpatient in reply to alexask

Alexask, sometimes with this disease, a marriage may not be worth saving and children's love may not be worth yearning for🥵

alexask
alexask in reply to pdpatient

Indeed. Some women will be looking for a better option than a pd patient.

Mate there is so much that you can do that is simple and not very expensive. John Pepper's fast walk for an hour 3x weekly. CoQ10 2000 mg daily really does spark up your mitochondria. Mannitol does kill alpha synuclein in your gut (and this is the crap that gets into your brain and starts misfolding neurons. L-Serine gets into the brain and starts unfolding misfolded neurons. Coffee Cherry Concentrate increases BDNF up to 143% and increases the production of brain cells. Red light therapy via helmets promotes the production of brain cells ..... the list goes on. The medical mob may not have an answer as yet but they certainly don't want a solution. Check out Chartist and John Pepper on this site. They know what they are talking about.

I found mannitol brilliant at raising my spirits

Astra7
Astra7 in reply to alaynedellow

Is your stomach ok taking it? I find it really upsets me which is a shame as it really clears the brain.

alaynedellow
alaynedellow in reply to Astra7

Does cause wind but heh

Stevenmast
Stevenmast in reply to Astra7

I used to get nauseous not So Much Anymore just once in awhile

Hi Steven, God loves you! Keep your heart positive, expect miracles and be happy! When you are needy it drains you and every one around you of the beautiful world around you! You can overcome the effects of PD by conscious focus on powering through the effects like being unable to write legibly. Focus on making your letters the same size instead of letting them get smaller. Force your stride to be bigger and if you lock up tell your left leg to bear your weight and lift your right leg and take a step. You can take back your life by creating new path ways in your brain! Cut back on your meds one at a time to make sure you are not over medicated. I found that meds cause more problems than Parkinson’s, I could not think clearly, had given up my hobbies and walked like a zombie.Now I can manage my money, walk my dog and build things in my shop. I don’t dwell on my misery, I have a reason to get up and go make a knife or table, anything that interests me. DO NOT GIVE UP! Reclaim your life one thing at a time, God made you so He can help you. Expect miracles to get miracles when others see you fighting to reclaim your life they will support you. Give them something to cheer about! Steven think about making those around you happy! When momma is not happy, ain’t no body happy!

God bless you, Charles Myers

Despe
Despe in reply to Baca

Charles,

Beautiful comment, one of the most encouraging I have ever read.

And God bless you.

Stevenmast
Stevenmast in reply to Baca

Good advice very interesting points! Thank you!

Mucuna is 30% more effective when taken with 500 mg ascorbic acid. Try it!

Cons10s
Cons10s in reply to Farooqji

Icbaliqbal are you saying ascorbic acid crosses the blood brain barrier? I have some NOW ascorbic acid, several years old do you think it expires.

Farooqji
Farooqji in reply to Cons10s

ascorbic acid or lemon juice increase the bioavailability of Ldopa. See Dr. Mischley slides in my comments below

KERRINGTON
KERRINGTON in reply to Farooqji

Yes, even a little vitamin c, or grapefruit juice helps me absorb my mucuna.

Farooqji
Farooqji in reply to Cons10s

It can be used beyond expiry date but may have reduced potency. Ascorbic acid is given a shelf life of 3 years from date of manufacture. After 3 years, ascorbic acid is usually found to have lost about 1-2% of its potency through oxidiation

dudadiesel.com/choose_item.....

Stevenmast
Stevenmast in reply to Farooqji

I didn't know that very interesting 30% a big number. Is that the same thing as Vitamin C?

Farooqji
Farooqji in reply to Stevenmast

Yes vit-C but Dr Mischley recommend that it should be in powdered form. Also CDP-Choline is another hack she recommends. I have extracted the 2 minutes relevant portion of the video and re-uploaded so I request you to watch it carefullyyoutu.be/YzEQD7fLlIE

Stevenmast
Stevenmast in reply to Farooqji

Thank you very much I'm about ready to take my first dose late start and I have a lot of lemons here I'll try that first. Thanks for getting back so quickly

Trailing
Trailing in reply to Stevenmast

Yes, Viamin C is ascorbic acid. My husband takes 1 tablespoon of Z Natural Foods Organic Mucuna Pruriens See Powder with 1,000 mg of Doctor's Best Pure Vitamin C Powder (as Q-C ascorbic acid) three times a day. Q-C is manufactured in Scotland and is prized for its quality and reliability. He added it to avoid nausea but glad to hear that it increases the potency of Mucuna.

He also takes Restore from <wehaveparkinsons.com> to his regimen. It is rather expensive but includes high doses of 7 supplements, and a lot of pills to swallow. It was no problem as we are use to taking supplements.

The PT explained how a person with Parkinson's needs to retrain his brain and make himself more aware of how he moves. Like making himself walk boldly and swing his arms etc. If you can, get your doctor to prescribe physical therapy so your insurance will pay for it. I think it would benefit you, or find some videos illustrating exercise routines for Parkinson's on the internet. It has really helped my husband. They all say exercise...exercise...exercise. It it also good for your mental outlook.

Hello Stevenmast,

SMILE

My thoughts:

Smile and count your blessings. Love yourself. Find something to be grateful for.

If you can’t find it, keep searching and you find more than one thing or person.

Do whatever it takes to reduce your stress.

Quoting ion_ion

“Don't worry about the things you can not control.”

Avoid all politics. The news is nearly all negative. Turn the TV off.

I am early in my Parkinson’s journey. I am not on any Parkinson’s drugs yet.

The following is my personal hack.

Exercise

Conscious Movement

Zinc is a dopamine reuptake inhibitor.

Metformin

Trazodone

Black Tea

Green Tea

Quercetin 800 Mg with Bromelain 165 Mg

2X

Coconut Oil

beta-Hydroxybutyric (BHB)

nicotine lozenges 1 to 2 mg

NAC

Thiamine

100 mg 3 X a day

Broccoli Sprouts

Love your self.

Regards

Dick

Stevenmast
Stevenmast in reply to dick1van

Thank you dick it certainly sounds like you're doing the right thing! This is great information much appreciated! I hate to blame things but this spiral started during the covid lockdown. Last year I was hiking, riding my unicycle. not depressed at least I didn't think so. Went off my diet put on weight . I need to climb my way back! Good advice thank you for your help dick.

rescuema
rescuema in reply to Stevenmast

I second broccoli sprouts (not ungerminated seeds - contain antinutrients). Definitely look into it - I can attest to sulforaphane's beneficial effects on overall health. I also use 1 tsp/day of Moringa powder (Kuli Kuli) to make tea and take it with raw daikon sprouts to supply myrosinase to augment the benefit. Don't overlook sulforaphane.

I bought organic broccoli seeds but how can I tell if they are ungerminated or not?Thanks

What you bought is a pack of ungerminated or unsprouted seeds. The reason I avoid unsprouted seeds is because of the antinutrients commonly present in seeds (phytic acid, erucic acid, etc). I also sprout my brown rice for a similar reason and to make the nutrients more bioavailable and avoid binding minerals.

I soak about 2 tablespoons of broccoli seeds in water for 4 hours, then drain and let them sprout for 2-3 days. During those days, I rinse and strain 2 times a day. The sulforaphane content peaks at around 48 hours, so I consume the very young sprouts with little roots showing rather than waiting longer. You can eat them raw, or choose to maximize the sulforaphane content/conversion by deactivating the epithiospecifier protein (ESP) at above 55C/131F heat, but not too hot to deactivate the contained myrosinase enzyme for higher sulforaphane conversion. I use a no contact laser IR thermometer I got from Amazon and it works great for my purpose. Sprouting lids you can find at Amazon for wide mouth mason jars also simplify the sprouting process.

Here is a short video that's simple to follow.

youtube.com/watch?v=Z7buU-P...

Alternately, you can simply cook the sprouts and consume them with some raw daikon sprouts (a potent source of myrosinase enzyme without ESP) - this is what I do often and also use the young spouts (very spicy, personally like them) to consume along with hot moringa tea. If this sounds like too much trouble, know that even if you deactivate the myrosinase in sprouts by cooking, your gut bacteria will supply myrosinase for around mean 10% sulforaphane conversion. You can also choose to eat some raw arugula leaves to supply myrosinase.

For PWP, caution is prudent to go slow and steady when activating Nrf2. As an extra caution, it's also a good idea to supplement iodine since sulforaphane can interfere with iodine absorption and may cause thyroid issues. A few drops of Lugol's 2% (5x a week) should take care of this, but also be sure you're not deficient on selenium when supplementing iodine.

Wow, thank you so much for such an in-depth reply.It is quite a lot to get my head round but I think I get it as I have been doing Wriga's broccoli seed protocol with the seeds I have. However, my husband (PWP) didn't seem to do so well on this protocol so after 6 weeks he has now stopped. Understandably he is a little reticent to start with the sprouts, but I would like to give them a try.

The biggest problem I have is the type of broccoli seeds I buy. From what you say, I need to buy seeds that are already beginning to sprout........is that correct?

For the myrosinase, you suggest raw daikon sprouts.......I've not heard of these before, are they the same as mustard seed sprouts?

Your reply is so valuable and so appreciated that I think you should make it a separate post on Health Unlocked.

Thank you

If you’ve tried wriga's protocol, you probably have the correct seeds. All you need to do is soak the same seeds for 4 hours in water and then drain. Wait about 2 days (rinse 2x a day) and then use them when you see a bit of sprouting with little roots showing. Very simple.

You can choose to let them grow out further if you prefer but the Sulforaphane precursor will go down while you get more veg/fiber as a food source to eat/cook with. They’re great in sandwiches, for example.

I get Daikon seeds and sprout them myself using the same method except for longer soak time and I let them get older. The myrosinase activity is superior to that of others. Since you have mustard seeds, you can attempt to sprout them as well but they often get slimy (mucilaginous) and tough to sprout depending on the type. The mustard seeds are also high in erucic acid so I personally don’t prefer them since you can overdose if you’re not careful.

Does your husband intake iodine or have any thyroid issues? Most people are iodine deficient without knowing these days. Even when I was overloading on Sulforaphane I noticed temporary excess hair-loss along with some symptoms related to hypothyroidism so I made sure to use Lugol’s at alternate times.

I'd be sure to supplement molybdenum (black-eyed peas) as I've posted in the recent thread since sulfur metabolism is dependent on sulfite oxidase, a molybdenum-dependent enzyme, and depressed sulfite oxidase activity will cause sulfite sensitivity (insufficient detox of sulfite to sulfate), yet another reason to go slow and steady on sulforaphane (sulfur-rich compound) for PWP.

Once again, I can't thank you enough for this information. You are so kind.It was good you reminded me about Lugols iodine as we have lapsed with taking that, so will get hubby back on it again. Same with Molybdenum. I usually rotate supplements (as there are so many), and Molybdenum is not presently in my supplement cupboard. Will order some more.

You’re welcome. As a reminder -be cautious with molybdenum supplement - you don’t want too much since it can cause copper dumping/deficiency. I personally prefer a bit food sources occasionally but as long as you’re careful it should be good.

KERRINGTON
KERRINGTON in reply to rescuema

I'd appreciate your opinion on Avmacol, a broccoli seed extract supplement being tested at John's Hopkins. Thanks.

rescuema
rescuema in reply to KERRINGTON

My opinion below.

healthunlocked.com/parkinso...

Slide#1

Strategic Eating for OptimizingMedication Effects

Laurie Mischley

• L-dopa competes with dietary protein for receptors.

Even small amounts of protein can interfere

Both plant and animal-based protein can interfere

• Meat takes longer to digest, likely to interfere for longer periods of time.

Vegetarian food passes through you faster (preferable for people with constipation)

• Eat predominantly plant-based proteins

Take your medication 30-60 min before a protein-containing meal

Anticipate reduction in effectiveness when you eat dietary protein

• Save dietary protein for the evening meal (optimize meds during day)

Freezing after meals – consider dopamine formulations that bypass the gut

• Inhaled, injection

Slide#2

Levodopa- [Non-Dietary] Nutrient Interactions• Levodopa interferes with folate/ B12 uptake & utilization

→ Raises homocysteine

• The more levodopa you take, the higher your homocysteine

Homocysteine concentrations greater than 11 are associated with

increased risk of dementia in PwP.

• Mechanism of Action: Low B12? Low folate? Homocysteine neurotoxicty?

• Can increases constipation, anorexia in some people

CDP-choline can make medication more effective

• Powdered ascorbic acid or lemon juice improve bioavailability

Source: Dr. Laurie Mischley's presentation slide

pdpatient
pdpatient in reply to Farooqji

Iqbal, do you think that you can share the slides?

Farooqji
Farooqji in reply to pdpatient

These slides were taken from her youtube video (I posted a week ago ) by taking the screenshots and converting into text using OCR. Check that video (@25:00 minutes)

Please no politics here in this forum and leave if you are going to have these temper tantrums every single day.

Stevenmast
Stevenmast in reply to pdpatient

I'm sorry I reading so many responses I'm a little confused. Are you referring to me when you talk about temper tantrums everyday?

pdpatient
pdpatient in reply to Stevenmast

Of course NOT😅🤙🏼😂

I am talking about any of us in general and we all have bad days.

I hope you missed something we still have one day and 3 hours! LOL

Glad that you won’t be making political comments, since you’ve gotten your opinion off your chest now. Let’s just support each other on our PD journey and leave out comments that can cause more stress and debate. Thanks

Despe
Despe in reply to Cashewpup

Why are you in the middle of my comments? I didn't address you. By the way, I never started a political conversation or posted a political comment. However, I will not leave unanswered trash comments about the President. No monopolies here.

Steve, it sounds to me like you're dramatizing the disease a bit. Compared to others you are still doing well I see. Get back on your best protocol of the past, get on a no-protein diet, and get going with your usual positive spirit. You need it to at least make life more enjoyable despite the difficulties and not get overwhelmed.

I disagree with my sad thoughts. :-)

pdpatient
pdpatient in reply to GioCas

Yup, @giocas. Thanks for sharing your positive attitude🙏

Stevenmast
Stevenmast in reply to GioCas

Thanks for the tough love Gio!

I’ve had excellent results with levodopa carbadopa and primadone. Talk to your neurologist. Good luck.

pdpatient
pdpatient in reply to Joanie2

Joanie's, I find it very interesting that you get results from primadone. Did not also try propranolol?

I too have been quite lucky with Essential Tremor medications. However, I am having a hard time convincing my current care team.

Joanie2
Joanie2 in reply to pdpatient

I take 1 in the morning, 1 at dinner and 3 at night. Botox for my head tremors really help.

pdpatient
pdpatient in reply to Joanie2

Can you please be more specific? Is that propranolol or primadone? Or a mix of both?

Joanie2
Joanie2 in reply to pdpatient

It’s primadone. I’ve never taken the other.

So sorry to hear you're having a bad time at the moment Steven.Some very good advice in the previous comments so no need for me to add anything other than to say stay positive, exercise if you are able (unfortunately my husband with Pd is not able), eat healthy food, don't drink too much alcohol and take supplements as recommended in the above posts.

I wish you well and hope things improve with both your health and your family life.

Agreed- there's lousy days ..and days you feel back to normal again.. I'm starting to take notes on exactly what I did, ate, exercised..etc. on the good and bad days. I have noticed that EXERCISE makes things better in general. It's important to stay away from stress of any kind- it makes everything worse.. Try and work things out with ur wife.. partners of pwp are stressed too! Meditate, watch funny movies, talk to friends, do a hobby.. whatever it takes to take ur mind off the worry of pd crap.. Life is bigger than pd..

"And Despe doesn't have any excuse at all for her censoring and her attacks on others, she doesn't even have Parkinson's, so she can't claim it's a symptom."

FYI I never wrote a political comment, and I never censored anything. However, as I wrote, I only replied to trash comments made by forum members WHO STARTED this political no-sense for PwP! I will not let the "other side's" offensive comments UNANSWERED. It's only fair, don't you think?

You are right, I don't have PD, therefore, I can handle stress, but PwP can't. They should, as I do, concentrate on PD therapies rather than heated political arguments.

Since when my opinion and expressing it is censoring and attack??

Stevenmast
Stevenmast in reply to Despe

Take a deep breath! Life's too short! When I wrote my post I was genuinely looking for some help. I was certainly not looking to stir up a political pot!

Despe
Despe in reply to Stevenmast

I understand, everything adds to the stress. . .

I know exactly what you are talking about, Stephenmast! It is so difficult to deal with good and bad days. Some bad days, I can hardly get around, without pain, stiffness, tremor, loss of sense of balance, and other symptoms. Then, rarely, I have a good day! It is probably easier for me, than you, to cope with such ups and downs, and not let them get in the way of enjoying life. Hang in there, as difficult as it may be. I am married, but kids are grown now, and on their own. My wife and I both have serious, chronic health ailments, so we help and understand each other. Sinemet helps me the most, to even out some of the symptoms. You would need to talk to your neurologist, and seek their advice on what medication would be best for you, at this stage in your life, so that you can have better stability, and be able to live your life, without so much stress and discomfort! It’s really difficult living with the uncertainty, of living one day, almost normal, and then, the next, having to deal with debilitating symptoms. Sinemet, increased dosage helped me with “off” times, but it took a couple years, to get a somewhat satisfactory stability. My neurologist adjusted my medicines several times, over a number of years, so that now, In general, I am able to handle symptoms etc. in a better way, than what it used to be! I take daily multi-vitamins, and stretch exercising to improve my physical ability to move around, at times, etc. Your suggestion of seeing a neurologist soon, is a good idea! Good luck to you!

Hi Marion, I have not had an opportunity to read all the responses that I got but it sounds like there are a couple of doozies huh? Today and going forward I will get back to doing the things I know work and try some of the good advice I got from Members like yourself. Perhaps I will start with a good book! Thank you very much! Steven

Thanks for your help perhaps you need to hit the surf! Sorry I offended you it was not my intention!

Don't live anywhere near a beach.

You should definitely talk to you Neurologist. It's not worth getting divorced over...take your wife and kids with you they know this is real, not fun for you and not just in your head (OK that was funny because it is)

Marion, well said! Thank you so much for your support and advise! Much appreciated! Steven

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