Knowledge is Power.

[Abundance4life]

I am here on behalf of my brother who has been diagnosed with Parkinson's disease since July of 2019 and in spite of him taking the medications prescribed hasn't had any real improvement. My involvement with him directly in this respect only started in December of 2022. I am reading avariciously in the hope of finding some meaningful remedy to his condition so I am open and willing to listen and learn from those of you who have been successful in the treatment Parkinson's disease protocols /therapy. Thank you.

[MBAnderson]

Your brother is lucky to have you.

"...finding some meaningful remedy ... Unfortunately, I don't believe there is such a thing, i.e., there is no silver bullet. Sorry.

Instead, there are life style changes (nutritional changes, weight & strength training, balance & flexibility exercises, sleep hygiene, social engagement, stress management, learning new things, testing for and correcting imbalances and nutritional deficiencies and perhaps things like dancing, tai chi, Qigong, sports, yoga, acupuncture, massage, etc.) I think (the Mediterranean) diet, aerobic exercise, intermittent fasting, and perhaps some anti-inflammatory supplements may be helpful. Read about "Broccoli & Sulforaphane Research Group for Parkinson's Disease" on Facebook, B1 also on FB, and John Colman's book "Rethinking Parkinson's" has many good suggestions, but I feel you'll be disappointed if your expectation is to find a remedy that "... have been successful in the treatment Parkinson's disease ... "

Some things work for some people, but nothing works for everyone.

Strive for acceptance.

[PDTom]

look at my page... parkinsonclub.de

[Esperanto]

The MBAnderson list seems to me quite complete in terms of tools with which you can do some repairs to make the PD symptoms somewhat manageable. Still, from my own experience I would advise you to first check if there are no underlying other problems causing the current medication not to work properly. This can be done, for example, with a detailed blood test in which vitamin levels are also measured. In particular the B vitamins, especially B6, B12, B11 and B1 are important for PD and the interaction with the standard levodopa medication. This is usually not done by default, but can prevent a lot of misery. As you say yourself: knowledge is power! Do not start taking supplements at random in the beginning, but only if necessary to better understand your situation. Once any deficiencies or excessive levels have been ruled out or corrected, fine-tuning with MBAnderson's toolbox can begin. Possibly you can also share with us how your brother's current medication is formulated. In any case, I hope you will find as much support and knowledge from HU as was/is the case for me. Welcome! 🍀

[Abundance4life in reply to Esperanto]

Thank you Esperanto

[House2]

what are his most bothersome symptoms? F ormulate an approach based on them

[Abundance4life in reply to House2]

Thank you for your advice House2. I will consider all the various responses and decide on a course of action in collaboration with his physician.

[JohnPepper]

Hi. Pd masication does nothing to reverse the symptoms of Pd, they were not designed to do that. There is still no cure for Pd, because, in my opinion, the medical world make more money treating illnesses that don't kill us, than finding a one-time cure. That's business.

Doctors don't find cures, they treat patients.

I started my Pd symptoms back in 1993 but was only diagnosed in 1992, when I had to give up my high-powered job, running a large company, which my wife and I had started in 1963. The stress involved in that business was huge.

When diagnosed in 1992 I had already been going to the gym every day, six days a week since 1970, but I increased it to 90 minutes every day when diagnosed. For the next twi years a watched the Symptoms get worse and in 1994 I decided to hand over my company to my son-in-law, who was highly qualified as an engineer. I

In 1992, when I was diagnosed, my wife joined Run/Walk for LIFE, which is a controlled walking program. In those two years, while I was getting worse, she was doing so well that she lost 14 kgs an weight and was fighting fit. She begged me to stop the gym, which was doing me no good, and try the walking. I said that I was walking on the treadmill as fast as I could for twenty minutes every day. What could walking, for one hour, three times a week do for me? Eventually I gave in and stopped the gym and started the Walk for LIFE.

After four months my condition had improved very noticeably. Ater three years my movement symptoms had almost disappeared. A recent study carried out by The Mayo Clinic, based on what I was doing, namely, High Intensity aerobic exercise. The found that walking fast for one hour every second day caused the brain to produce a large volume of GDNF and BDNF, both of which are GROWTH FACTORS. The GDNF repairs or replaces the Glial cells, which manage the production of Dopamine in the brain, the lack of which is the cause of Pd! All the people with Pd taking part got appreciably better, as I have!

No mention was made of PD in the g=final report, they only mentioned the two growth factors, but not what they did for us.

I wrote a book about it in 1996 and have kept it up to date ever since. Contact me and I will tell you whatever you need to know about walking. I do not charge for what I do. I am 88 years old and still living a normal life.

[Cutie2001 in reply to JohnPepper]

Thank you for the info. I was diagnosed in 2020, however, I also have spinal stenosis and sciatica so my ankles and legs hurt when I walk or stand. I have a treadmill so if I try to walk, what speed do you recommend. I try to exercise and stretch daily and I also go to my Chiro 2x a week and PT 2x a week. Thanks again.

[Racerk]

Try as much exercise as he could, up to 150 mins per week. Also try high fiber diet, eating oatmeal and dry plums regularly. Better digestion system means better absorption on medication! Hope he feels better!

[Zella23]

Lots of good suggestions here to find out what may be helpful for your brother. My husband was dx 7 years ago in 2015 and some of the suggestions here mentioned above have been helpful. Our Neurologist usually says if you find it helpful then carry on. He did promote exercise, which has shown to support with delaying progression.

You live on a beautiful island which my husband and I visited a few months ago. My HWP definitely enjoyed being in the Caribbean and tried many different exercises which were part of the holiday. In particular tai chi taught by a local man. It helped with balance and movement, swimming was also something he enjoyed.

There is much support on this website, lots of helpful and supportive advice.

[STEWBABY]

HI DOSE THIAMIN, EXERCISE, BOOKS AND PLENTY OF READING AND GOOGLING.GOOD LUCK.

[SilentEchoes]

Exercise like fast walking isn't an option for me, my suggestion is a vibration plate machine set at 40hz. It works. Mine is the Power Plate, suggest you get one with handles.

Magnesium, magnesium, magnesium. Vitamins D3, K2 and therapeutic dose melatonin at a minimum. You're going to have a drugstore level of supplements.

Seriously consider fasting to induce autophagy. OMAD (one meal a day) M-F and 48hr fast on weekend. Keto/Wahls protocol. Eliminate sugar, it's an antinutrient.

Detoxify with zeolite and clean up lifestyle to remove toxins from your home and diet.

This isn't a sprint but a marathon. You don't make short-term changes, you adopt a new lifestyle, it gets easier.

SE

[Despe in reply to SilentEchoes]

SE,

Are you using Zeolite? Will it be helpful for leg lymphedema? Hubby's legs are very swollen (started after a UTI and still fighting it). FP diagnosed lymphedema and recommended drainage which hubby started last week (2 X week) in addition to compression socks (useless).

How have you been?

[SilentEchoes in reply to Despe]

Lots to unpack, lol. Sorry for the rant that's coming but maybe it will help. I don't know if Zeolite will help with edema. Don't see how it could hurt though. I struggle with edema myself. Getting those legs up is one of the best things you can do. The next best thing is the vibration plate machine to move the lymph fluid. 10 minutes twice a day at 40hz.

I have chronic kidney stones and spent 5 days in the hospital while on vacation over Christmas (my poor family). I didn't and don't have signs of infection (fever) but they felt it was necessary to give me IV rocephin. It cleared up the dermatitis on my face 🙂 and tore my gut apart 🤕. The electrolyte imbalance made my fasciculations far worse.

I've now required 5 surgeries in the last 3.5 years to remove obstructing stones. This last one couldn't be removed because the laser equipment to break up the stone wasn't available so they put in a stent to allow urine to drain into my bladder. I have scar tissue in my ureters from the surgeries and even though I could have passed this stone, it got stuck at the entrance to my bladder. I asked if they could just snare it and pull it through, but they were worried about sepsis and want me on antibiotics for 2 weeks before I undergo a 6th procedure to remove the stone. Every time I have anesthesia my ALS progresses. This last time my myoclonic seizures got way worse.

They're killing me. I am so over our medical system and their profiteering on my suffering. No one will tell me what happened to cause me to begin forming calcium oxalate stones. The doctors used to tell me it was diet, you know, because I'm a woman and I eat too much chocolate and other BS. Obviously this isn't an issue of eating too much of the wrong things. It appears to be related to dysautonomia and hypothalamic injury.

I don't want to deal with the consequences of 2 weeks on antibiotics so my approach is to load up on natural antibiotics. I bought organic oil of oregano - it's used in organic chicken/egg production to prevent illness. Cranberry juice keeps the bacteria from sticking to the bladder wall. You can dilute unsweetened CJ in water with a few drops oil of oregano (not essential oil) and add stevia - drink 4x day. Use of [rx] antibiotics is up to you.

My next step is to try to dissolve the stones and prevent them from reforming so I don't need anymore surgeries. I bought Garcinia Cambogia, it's high in hydroxy citric acid. Dr. Berg recommends blending a whole lemon and diluting in 2 c of warm water (sweeten w/stevia) and drink every day. I bet this would help prevent UTIs too. The pith in citrus fruit is loaded with pectin, a strong detoxifier, so I think you're on the right track with zeolite.

Hope your husband feels better soon!

SE

[Despe in reply to SilentEchoes]

OMG! You have gone through so much. You remind me of myself, I have had 18 ear surgeries, the result of incompetent and money hungry surgeons!

Hubby is on all of your suggestions except Zeolite--we'll think about it. When I witnessed blood going through his catheter and into his Foley bag, he was in a rehabilitation facility, after been in the hospital for 3 weeks following his fall. I told the nurse and she did nothing. She only responded after I warned her that I will contact MEDICARE. By the time, she arranged for an urology appointment, two days had passed and hubby was not on antibiotics or anything else to treat his UTI. The urologist prescribed an antibiotic for 14 days. He didn't finish them as I had him moved to another rehabilitation facility, the best in all of my state. At the new facility, he had to undergo all the admission requirements for his therapy. Another 2-3 days went by before the doctor prescribed another antibiotic, also useless. I couldn't give him anything other than what was on their pharmacy's med list and a few supplements. UTI flourished at both rehabilitation facilities. The swelling (edema) started at the first rehabilitation facility (killing facility and the worst in all the US) back in mid-September, and it is still active to date. He was discharged from the second rehab center October 3, 22, and to this date still fighting his UTI with D-Mannose and Cranberry combination capsules. One lemon's juice in a cup of water with no added sweetener is on his daily sup/vit routine since diagnosis.

On January 26, he has another urology appointment (this doc is supposed to be the best in town). He has been scheduled for a test called URODYNAMICS to deternine the cause of his inability to void--Yes, he is still on a catheter! And YES, no one can diagnose the reason of his lymphedema. Our FP told us the cause is Parkisonism. . .

[SilentEchoes in reply to Despe]

*"killing facility and the worst in all the US" and 18 ear surgeries! OMG!! I almost feel lucky.

Does your husband have an enlarged prostate? Could this be blocking his urine flow?

He must have been on bed rest during rehab, that doesn't explain his edema. I don't want to be an alarmist, but has anyone checked his kidney function?? Blood in urine can be from anywhere along the urinary tract including the kidney or even outside the urinary tract.

Sudden swelling in his feet and ankles can be a sign of kidney failure. If it was my husband, I'd take him to urgent care and demand testing - NOW.

Also: have his urine cultured to find out exactly what he is infected with so you know if it's MRSA or something else. This was a concern of my recent hospitalization.

I feel like at some point we become disposable and it's hard to find compassionate care.

See my reply to Gcf51 below. Zeolite link: healthunlocked.com/redirect...

This study is specific to your husband's situation. Seems like he acquired the UTI from unsanitary treatment during rehab. Oregano oil is a complimentary treatment with antibiotics.

Oil of Oregano: ncbi.nlm.nih.gov/pmc/articl...

Sending prayers. Message me if you want to talk privately.

SE

[Despe in reply to SilentEchoes]

Thanks, SE. I will.

[Despe in reply to SilentEchoes]

He had an enlarged prostate even before diagnosis or it could be a PD symptom, and we didn't know about it. He had frequent urination problems and nocturia. No problem to void. However after the fall and the vertebra ( C4) fracture, everything went haywire! He was admitted and was diagnosed with Aspiration Pneumonia, Acute urinary retention and Acute kidney damage. He had all the tests, no kidney failure. He had a feeding tube as he couldn't swallow, but he went off of it within 3 weeks after surgery. He now eats everything, no problem at all. The catheter remained as he failed twice the test for its removal. On January 26, he will have a special test, URODYNAMICS, to find out the cause of his inability to void. A lot of causes but once the doctor diagnoses the specific cause, he will treat him accordingly.

His urine was cultured and the new urologist prescribed the right antibiotics (he hasn't finished them yet). Yes, you are right, unsanitary conditions of this GROSS rehab center and failure to change the catheter caused him the UTI. Until that time, his feet were normal, but they started swelling when I saw the blood entering his catheter bag! That was mid-September and we are still fighting the UTI!!

I use oregano in almost everything I cook. Part of my culture.

[SilentEchoes in reply to Despe]

I hope you get some answers next week 🌺

[Despe in reply to SilentEchoes]

Thanks! Me, too.

[Gcf51]

To me... it doesn't make sense to detox with aluminum compounds when heavy metals is to target of detox. Despe and SilentEchoes I take products with Orthosilicic Acid but shy away from aluminum compounds.

[SilentEchoes in reply to Gcf51]

1) I appreciate your reply. It made me dig deeper into the "how and why" instead of just trusting my source of information.

Zeolites can be natural or synthetic aluminosilicate minerals. Within the zeolite classification there is the natural zeolite clinoptilolite - the zeolite species we are talking about. There are three different forms in the series of clinoptilolites: bound to calcium, potassium or sodium. sciencedirect.com/topics/ch....

Zeolites contain metal cations, which are exchangeable, or they may also host neutral guest molecules that can also be removed and replaced. The majority of natural zeolites are of volcanic origin and have a general formula, M2/n:Al2O3:xSiO2:yH2O, where M stands for the extra-framework cation.

Is the naturally occurring zeolite, clinoptilolite safe? ncbi.nlm.nih.gov/pmc/articl...

This is a fascinating review of zeolite. I'll recap the research in a separate post. Gotta go take my zeolite 🙂

SE

2) I think there is room for both zeolite and ortho-silicic acid (a stabilized form of choline) in recovery. I could not find evidence that aluminum is liberated from the zeolite matrix in the body. Silica does (see link above).

Ortho-silicic acid is important in the treatment of osteoporosis and osteopenia by helping build collagen.

science.gov/topicpages/o/or...

You also need therapeutic levels of Vitamin D and K2.

SE

[Despe in reply to Gcf51]

Thanks, Gcf51! None of the below ailments apply. How is it helping you?

Uses for Orthosilicic Acid

According to natural health proponents, orthosilicic acid can treat various health conditions, including the following:

— Alzheimer’s Disease

— Arthritis

— Atherosclerosis

— Hypertension

— Heart Disease

— Osteoporosis

— Stroke

[Gcf51 in reply to Despe]

Orthosilicic Acid seems to help clear a skin rash I develop during winter months. I only started this year. Hopefully, next year no rash. I take mainly to help my skin.

[Gcf51]

As for me the biggest improvements have been from High Dose Thiamine (B1) and exercise. I recommend Dap1948 's book and her Facebook Group.

amazon.com/gp/product/B09TZ...

facebook.com/groups/parkins...