Just an update on how hubby is doing. He is feeling better than he has been for years! Something seems to have had a positive effect and he is positively energetic and laughing and talking and back to helping with housework, and joining in with the family. He has even got into our spa pool with me that we have had 3 years which he has always refused to do before, and has been playing music which is a sign he is feeling better. Yesterday we went for a 3 hour stroll around town, stopped for lunch at a cafe and walked home. Last year he would have flaked out on the bed after a 45 minute walk. So I am pretty happy.
Last winter he was very anxious and sick , always fluey and even suicidal. He hid away in his bedroom and would not join into anything. Any kind of conflict with our teenaged son would make him sick the next day.
He has been improving slightly since the beginning of the year but I changed a few things around a few months ago and added a few things and the improvements seem to have snowballed. This is his timeline. It is impossible to tell which helped most as some effects are gradual and they were added together.
In November he got his Apolloneuro which is a device that has helped with his anxiety. The effect was subtle and gradual.
In the early year he got his red light coronet hat and uses it twice a day and improvements continued.
Then he did a 3 month course of toxaprevent which is supposed to remove toxins and infections in the gut. It was hard to tell if it made a difference but gradual improvements continued.
A couple of months ago he changed to the new Hardy’s daily essential nutrients with added vitamers which is designed for people with the mthfr genetic mutation of which he has a double mutation.
Then he got off the final tiny bit of mirtazapine and sertraline that he has been weaning off for 2 years. It was such a tiny amount the doctor didn’t believe it could be doing anything but previously he had stopped it on a slightly higher amount which was still a tiny fraction of the original dose and he suffered so much he had to restart at the tiny dose.
Then a few months ago he started on 2x30mg ambroxol x2 per day
And 1 tsp Ceylon cinnamon
And 500mg of rhodiola rosea
He has swapped fish oil to one with high epa 1200: DHA 300 ratio.
And added hemp oil 2000mg per day, liposomal vitamin c, citrus bioflavonoids, krill oil.
The accelerated improvement was over the last few months but could have been in part due to the rest of the changes. It could also be due to the mirtazapine and sertraline being out of his system.
I feel like the rhodiola made a difference but it could have been coincidental.
He still takes many other supplements still too so it could have been additive with them .
He is now coping well with any stressful situations like conflict with our son and the worry of covid and the bridge club being closed.
See photos below for full regime
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LAJ12345
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None of that stuff would make any bit of difference without the one main thing he has going for him, and that most important piece of the puzzle is he has a most outstanding and loving wife taking extra special care of him! He is a very lucky guy and you are amazing!
Thanks for that! It’s worth it to have him feeling better. It must be something else too though as support has been continuous and this has been quite a change over a few months.
Everybody wishes they could have an advocate like you! When he was locked away in his room you kept the pedal to the metal in searching relentlessly for help for him and this is the result of all your hard work! Congratulations to both of you!
Congratulations to your husband feeling better and having so much wonderful support from you…...Unfortunately I’m at the staying in my bed stage with little support or hope of feeling better anytime soon…And WOW that is a lot of supplements How do you keep track giving all them out and do they all benefit him with no adverse reactions especially to his liver which will have to process them all ???
Well most of them he has been taking for around 2 years. He had checkup with GP with thorough blood tests, liver function test etc after he had been on them for about 6 months and a year and everything was normal . He feels so much better too. He used to have no energy , would sleep most of the day, refuse to do anything and always say he felt fluey. Now he feels better than he has for many years. I think food has many different compounds in it. Most of these supplements are vitamins, natural oils and herbs so you wouldn’t think twice about eating a big varied plate of vegetables and fish oils which would have more compounds.
I just have a large pill organiser which I fill once a week. I reorder when they get low so I always have spare..
I just want to encourage you that even though staying in bed seems easier than trying to maneuver through the day having to deal with all of the symptoms this disease brings, it does more harm than good. Getting up and moving is going to be to your advantage, trust me. Most days I feel like you do but once I get up and walk the dog and use my peddler I feel so much better. The doctor who dx’ed me had these 5 great words for me, “Move it or lose it.” It’s my daily mantra and it has really helped me all these years. Nearly 15 now. And as for support, I have little too so I have to be my own support system and take the bull by the horns and get mad at Mr P as I refer to this disease and kick his butt to the curb. Do all you can to not let him win. Is there a neighbor who could help you out and maybe walk with you daily. You really will feel so much better I think. Sorry for your situation and I wish you well..
I would second that. Part of hubby’s progress has been his daily walk. I know if he didn’t have me to encourage him to get up and walk each day at the start of his illness he would have never got up and I think he would be very bad by now.
Give yourself a very small target to start . Maybe getting up and walking for 10 minutes. Add 5 minutes more each day. Don’t make the goal too big at the start and if you can find someone to keep you motivated that will make it much easier.
I agree, set a small goal to start. I have a motorized treadmill that I modified, attaching a walker to it so I have added support and something to hang on to . Setting a small but doable goal is a great idea!
Thank you for your reply and encouragement much appreciated..Unfortunately my main problem stopping me walking is severe Dystonia with my toes curling in on themselves so much that I can barely take a couple of steps Another major problem is I have severe rheumatoid arthritis in the ankle of the same foot which is also very painful..I’m due to see my Neurologist in 2 weeks and will ask him if there’s other treatments to possibly alleviate the Dystonia even for a few hours so then hopefully I could at least do some walking Thanks again for your reply 🙏🙏🙏
Severe Dystonia causing my toes cramping and curling in on themselves Very painful 😓
Severe Dystonia causing my toes cramping and curling in on themselves 😓
I was reading that toe spacers help with what you are dealing with. I use them at night because I get a lot more pains in my feet and toes then and they really do work. You can find them very inexpensive on Amazon.
Yeah but most he has been on a while. The above are the new things.
I don’t want to change too much now something is working but I am thinking of starting to cycle some. Ari Whitten recommends with his supplement (which I copied some of my ideas from) that they are taken 5 days on , 2 days off. What do you think about that idea?
Note not much actual medication though which is good! Less than he was on before diagnosis now antidepressants stopped.
I don’t know as he started ambroxol, cinnamon, the vitamers form of Hardys and rhodiola all at once, and he was already starting to feel a bit better before that so maybe the red hat was helping. I list everything as I really don’t know.
He is only taking the ambroxol at the low rate on the packet not the clinical trial dose as he always over reacts to medications so I usually find a small dose of anything is best.
Wow! You sure do take good care of your hubby! Also, it looks like the support medical team has been of immense help! I agree with bass of spades, that your hubby is very lucky to have you! A loving wife makes all the difference! Indeed, you are amazing!
So pleased to hear your husbands health continues to improve, due to your researching and helping him. So many supplements but the only thing that matters is that he is improving and it’s down to your love and care for him. Thank you for your uplifting post and sharing it with us. You are one amazing wife 🤩
Hi we just got the red coronet from Australia. The company instructions are for the 24 minute program once a day. I know there are things on the web about using twice a day.
How much did you pay for the coronet and shipping plus import duty and tax into the UK?Seriously considering buying one but I know hubby won't use it regularly as he will 'forget' or 'not bother' when I'm out at work
I’m in New Zealand and they have a special rate for Australians and New ZealandersIt will have a different plug to you but you could ask them if it can come with a uk plug?
I initially put it on my husband when he was sitting on the PC first thing then in front of tv at night. Now he asks for it or puts it on himself. Initially he was very reluctant but it didn’t take long before he was asking for it. He finds it very pleasant.
I use it too as a preventative thing. I understand reluctance to spend so much. It was cheaper for me being in NZ. But when I look at the cost of supplements which are consumables at least this is a one off cost.
That he asks for it himself makes me think that he consciously associates a benefit with wearing it. Has he expressed what that benefit might be? I'm tempted too, but also cautious in case this is a passing fad. I had a family member that jumped from one fad to another and it has left me somewhat wary (maybe gun-shy is the better word).
He knows he feels better much better than he has for years and he associates it with the red hat. It feels warm on his head which he also likes. He did also start various other things more recently that seemed to speed up the improvements which were initially subtle and gradual so I cannot attribute the improvements to any one of the things entirely. I guess the only way to find out for sure is to stop them all, wait for him to feel unwell again then introduce them one at a time but not keen on that experiment!
Yes, the other thing to remember when balking at the cost is it is a one off cost and can be used by more than one person, whereas supplements have to be bought regularly.
I wasn't trying to highlight the price, just the conversion to US$ since that is where I am. The Vie Light products seem significantly more expensive, but their approach is different too in that they aim light into the nostrils which the Coronet does not focus on.
LAJ, on the assumption that the light is responsible for the improvements, what was the time lapse from the start of red light therapy until improvement was seen?
He started using it mid March. I don’t think it was completely responsible as that was 6 months ago and any improvements were subtle but in the last few months after adding the other things listed above there was a much more dramatic improvement.
He hasn’t had any adverse side effects from the coronet. He still has some tremors but they have not been too bad yet. These mainly seem to be caused by him being excited eg watching football, or angry eg at our teenage son!
I believe you can get in the US but they give a special price to NZ and Australians.
It comes in a flat pack and has to gently be bent into shape and screwed together before you first use it. Then all you do it plug it in and put it on your head for 20 minutes twice a day.
You could try reading Ari Whitten’s book Red light therapy which is available on kindle or hard copy for all the research.
One of the problems when a person is taking so many supplements, additives and treatments, is that it is impossible to know what, if anything, causing the improvement.
We all have good days, and good weeks, good months and years, with or without treatments. I think I am better than a year ago, with no change in treatment . If I had started something new, it would have been easy to attribute it to the improvement.
The Michael Fox movement has a project where several thousand people with PD, fill out a long form very four months , detailing their symptoms, as well as their treatments. I have belonged to this group fr several years. It should eventually shed some light on whether meds, diet or supplements improve symptoms and/or longevity
That will be interesting. I do think that each individual might have different root causes, deficiencies, genetics and infections . So something that works for one might not work for another person. And any supplements will be paired with individual diets and different plants have another whole range of compounds of course. So it could be some plant in the diet is contributing to an outcome and might not be recorded. And different gene defects might mean a supplement may or may not work for an individual. I am not sure how easy it will be to cover all variables.
It’s just the maximum dose on the packet! He just has 2 morning and night. He is an over reactor to all medications so I always start low
I am wary of starting on a very high dose of any pharmaceutical without oversight by a doctor eg in a clinical trial and he is unlikely to find one here in New Zealand. He started on 2 a day then he went to the 4 a day. With the other things he is doing he is feeling very good so why break what isn’t broken!
I spend about the same amount as you do on supplements. I'm having trouble finding a neurologist in Pittsburgh that will work with me on using supplements. I have been working with a pharmacist, nutropath but am losing faith in him as he won't check for interactions with c/l and baclofen. Any thoughts?
We were supposed to see the specialist last May! Haven’t seen him for 2 years. We have his nurse that just wants to increase medications. Trying that recently nearly killed him. I feel we are doing better on our own at the moment.
They will say b6 is not compatable with madopar or sinemet but just because it interferes with the carpidopa. But your body actually needs b6 for many enzymes and not carbidopa!
Just keep timing medications away from supplements.
Don’t forget food has a billion chemicals in it too. If the supplement is in a natural form at least the body might recognise it as a new food. You wouldn’t check interaction with a new food.
Levodopa absorption can be affected by how much protein is in your diet, this is because levodopa has a similar structure to the building blocks of proteins called amino acids. The body absorbs proteins and levodopa using the same transporter, so less levodopa is able to be absorbed when it is with protein. This means levodopa levels may be lower when there is more protein in the diet.
The group of PD patients who benefit most from changing protein in their diet are patients in the later stages of PD and have on-off motor symptoms.
A low protein diet (LPD) is when protein is limited to a small amount at each meal.
The protein redistribution diet (PRD) is when the daily amount of protein is eaten in the last meal of the day.
In studies the protein redistribution diet led to the most improved quality of life for late stage Parkinson’s Disease patients.
Although reducing protein may benefit some patients' symptoms it is also very important to balance this against potential weight loss and decreased quality of life, if diet is used long term,
Pyridoxine (vitamin B6)
When oral levodopa is taken with pyridoxine (vitamin B6) it can decrease levodopa’s effectiveness.
Vitamin B6 does NOT affect the combination medication of levodopa and carbidopa, only if levodopa is taken on its own.
If you are taking levodopa (without carbidopa) you should avoid pyridoxine supplements unless prescribed by your doctor.
Some foods have high levels of vitamin B6 so discuss with your doctor whether you need to limit your intake of these foods.
Some examples of high vitamin B6 foods are fish, avocados, bananas, beef, cabbage, carrots, cauliflower, chicken, hazel nuts, peanuts, pork, sweetcorn, vegemite and walnuts.
General Nutrition
Studies show that a good diet containing a high amount of fruit, vegetables and fish reduces the risk of PD and may slow the progression of PD.
Coffee and tea have been reported in studies to be protective of brain cells and reduces risk of PD.
Bottom line:
When on levodopa it is important to eat a good, well-balanced diet.
If taking oral levodopa (without carbidopa) you should avoid vitamin B6 supplements unless recommended by your health professional.
Patients with late stage Parkinson's disease, who have on-off motor symptoms, may benefit from protein redistribution diet. Before changing to a protein redistribution diet should be discussed with your doctor. long term this may lead to weight loss so should be discussed with your doctor."
Yes so they think levodopa is more important that b6. I think I would rather not be deficient in B6 as it is involved many processes in the body so a deficiency causes many symptoms. It should really say be careful of taking levodopa as it might deplete b6 rather than the other way round I think.
Yes, that’s what we do in the hope the b6 pushes all those enzyme processes along then gets wiped out when the next levodopa dose is taken. There is b6 in some food after all so I think if the supplement is taken with the food surely it isn’t much difference.
You can’t survive with no b6 after all so I guess the trick is to make sure you have enough but not too much.
He has only seen the neurologist 3 times in nearly 4 years.Once to diagnose, then the other two to measure symptoms. The only thing he prescribed last time was a low dose of Kemadrin which I had researched and suggested to him after a recommendation from someone here.
Delighted to hear of your husbands improvements, I have a homemade redlight bucket hat which my son constructed, after reading about the success of the Australian therapy, I must dig it out and start using it again, I'm in Nelson NZ, having moved from Christchurch shortly before the earthquakes. Like you I have experimented a lot with supplements and minimal help from Neurologits, who seem to basically measure and record progress, or subscribe medication which makes me worse. I'm 11 yrs post dx now and still walking each morning and taking an interest in life. Poor balance and tremors are my main problem .
How do you check to see the interaction of vitamins and the medication that he's taking? I'm on low dose 1 c/l (25-100mg) every 8hrs sinemet and 5 mg of Baclofen. I have no energy and starting to be depressed. I take lots of supplements. Concerned about the interaction of the supplements and the medication. Drugs.com doesn't seem to have an answer.
The Hardys and restore gold scientist say that they are compatable with the madopar.
I search side effects each time I add anything. He only takes 3 1/2 x 62.5 madopar and 1/2 procyclidine and 0.5 mg clonazapam per day.
Given doctors have made him so sick piling on medications with apparently no care as to interactions I haven’t found any interaction with any supplements that have been nearly as bad. Some have not made a noticeable difference, others like Hardys made noticeable improvement in mood in less than a week.
Have you considered trying Hardys and restore gold. Having had hubby decrease those and get worse then increase and come back to happy mood and more mobile so quickly I am pretty sure they are beneficial.
Thanks Good to hear Hardys and Restore gold are working for your hubby.When I checked RestoreGold it has most of the same supplements that I am taking.I'll check them out again.
Yes I had the same with him on all the separate ones in both but it is so much easier to take them all in one product and it wasn’t more expensive as the tudca was so expensive separately. Hardys at least is Canadian and quality controlled and been around for 15 years or more , has clinical trials, and has product specialists and scientist who you can talk to for free as part of the cost of the supplement.
I ended up swapping out a huge number of individual products.
I will check it out. Right now I get a 30% discount with nutritional Frontiers on all my supplements. So I will compare them. Thanks again for your help
Ok, compare the vitamin types too to make sure you are getting the right forms of b12 b6 etc
And if you say you aren’t feeling that great maybe they aren’t working for you or aren’t in the right ratios. I found the individual ones didn’t work but the same things in Hardys did so even if they are slightly cheaper if they aren’t working for you then it is false economy. Maybe just do a 3 month trial swapping all the duplicates out and if it’s no better go back to the originals.
I don't believe it meant all food. It said alcohol and talk to your Dr about what foods are better....
" You should avoid or limit the use of alcohol while being treated with levodopa. You may experience reduced effectiveness of levodopa in the presence of foods or enteral (tube) feedings with a high protein content. This may make the symptoms of Parkinson's disease worse. Talk with your doctor or nutrition counselor about the best foods to eat while you are taking this medication. Contact your doctor if your condition changes."
Yes, not all food, but most people wouldn’t think about checking interaction between a medication and any types of food and many supplements are just concentrated food extracts
Thanks again. After reading that Baclofen may make PD sympotems worse,I called the DO and asked if the interaction between the two drugs could be causing the involuntary movements and increased tremors between doses.. I was prescribed the baclofen for quadricepts cramping from sitting and big toe rising. It helped considerably.I think I may have him wen me off the baclofen and see what happens. Thanks again
Is it in tablets? We changed to madopar in the tablets then they can be cut. He did have the capsules which you can’t. He now has 3x whole in the day and half before bed.
Mine is in tablet form .I take1 c/l (25-100) at 6AM, 2PM, 10PM. Which dose would I start with and how soon will I know if it works?Thanks again for your help.
If you have the tablets you can try shaving a little off each one and see if it helps. Do it slowly only reducing once every few days to a week. Do you wake up able to move and feeling a bit better or completely immobile? If you are feeling quite good first thing in the morning it might mean you are producing your own overnight so you might be able to taper that 10pm one off slowly to a half.
They are also spaced quite far apart. You might feel better if you cut them all in half and took them at 4 hour intervals instead. Then you wouldn’t get the huge peaks and troughs. But if you are completely off when you wake up you could also try the whole one first thing then subsequent half doses 4 hourly for the rest of the day.
Remember I’m not a medical expert !
Just don’t dramatically decrease total daily dose too quickly. Slow and steady is better.
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