Update on hubby: Just an update on how... - Cure Parkinson's

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Update on hubby

LAJ12345 profile image

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

67 Replies

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.

You work very hard and it is paying off !

LAJ,

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!

Art

LAJ12345 profile image
LAJ12345 in reply to chartist

Thanks😊

He’s a lucky man to have you in his corner.

LAJ12345 profile image
LAJ12345 in reply to reedboat2

Thanks😊

Current regime

Regime

Wow! That is a lot, but having said that, it's very similar in our cupboard with all the products I give my hubby too

OAFC profile image
OAFC in reply to glenandgerry

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 ???

LAJ12345 profile image
LAJ12345 in reply to OAFC

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..

Despe profile image
Despe in reply to LAJ12345

Oops, sorry, I just saw "Hardy's" supplements.

LAJ12345 profile image
LAJ12345 in reply to Despe

Looks a bit different as it is the added vitamers one

Ca1208 profile image
Ca1208 in reply to OAFC

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..

LAJ12345 profile image
LAJ12345 in reply to Ca1208

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.

Ca1208 profile image
Ca1208 in reply to LAJ12345

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!

OAFC profile image
OAFC in reply to Ca1208

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 😓
Despe profile image
Despe in reply to OAFC

Are you taking magnesium? Spraying with magnesium oil your legs and feet could help.

OAFC profile image
OAFC in reply to Despe

Yes I take magnesium capsules x 2 a day but I’ve not tried the spray Thank you I will give it a go 🙏

Despe profile image
Despe in reply to OAFC

Two capsules are not enough although you have to read dose instructions on the bottle.

OAFC profile image
OAFC in reply to Despe

Oh right 🤔it says 2 a day on the instructions

Ca1208 profile image
Ca1208 in reply to OAFC

This is one of the peddlers I use. Even with your cramping it still may work and it gives you some exercise.

Peddler
OAFC profile image
OAFC in reply to Ca1208

Thank you 🙏

Ca1208 profile image
Ca1208 in reply to OAFC

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.

Despe profile image
Despe in reply to LAJ12345

Hardy's are missing :) The competition is on! :) :)

I am very happy for both of you. Perseverance in its highest!!!

Plus coronet red hat, apolloneuro.

Plus 3 x Madopar 62.5 1/4 x 2 Kemadrin (procyclidine)
chartist profile image
chartist in reply to LAJ12345

It would be easier if you said what he is not using! I saw everything, but the kitchen sink! 😲😲😲

Art

LAJ12345 profile image
LAJ12345 in reply to chartist

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.

chartist profile image
chartist in reply to LAJ12345

I like that idea because the body seems to adapt to some things and rotating may help to slow it down.

Art

Despe profile image
Despe in reply to LAJ12345

That's what hubby is doing, taking WE off (except probiotics and Vitamin D).

LAJ12345 profile image
LAJ12345 in reply to Despe

Ok does that seem to work?

Despe profile image
Despe in reply to LAJ12345

Yes, no demise. A glass of water with fresh lemon juice nightly also helps liver's detox.

LAJ12345 profile image
LAJ12345 in reply to Despe

Good idea

The doctors prescription

Pharmaceuticals

Don't you feel that Ambroxol has made the difference?

LAJ12345 profile image
LAJ12345 in reply to Farooqji

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.

Do you have any advice ? Thanks

LAJ12345 profile image
LAJ12345 in reply to LondonPD

We both use it twice a day. I thought I might as well use it too for prevention.

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.

Thank you. I can but hope he uses it if I do buy one, but still not sure whether to invest

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!

Nooooooooooo! :) Don't look a gift horse in the mouth.

Interesting idea. Where is your location out of interest?

LAJ12345 profile image
LAJ12345 in reply to LondonPD

New Zealand, Christchurch.

What a thorough report which I am sure will help many of us. Thanks!

What’s the red hat, can anyone supply a link?

LAJ12345 profile image
LAJ12345 in reply to Oliveoyl1

wellred.com.au/products

We have the duo one.

There is another one called the vie light which is also very good.

vielight.com

Coronet has a discount for New Zealand and Australians.

chartist profile image
chartist in reply to LAJ12345

$995 Australian = $733.02 US

xe.com/currencyconverter/co...

Art

LAJ12345 profile image
LAJ12345 in reply to chartist

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.

chartist profile image
chartist in reply to LAJ12345

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?

Art

LAJ12345 profile image
LAJ12345 in reply to chartist

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.

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.

Just be pleased with the change.

LAJ12345 profile image
LAJ12345 in reply to Condor13

True.

Condor13 profile image
Condor13 in reply to LAJ12345

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

LAJ12345 profile image
LAJ12345 in reply to Condor13

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.

Condor13 profile image
Condor13 in reply to LAJ12345

The other very important variable is that Depression will often go away with or without treatment, with a huge improvement

Condor13 profile image
Condor13 in reply to LAJ12345

Out of interest, could you estimate the daily cost of all these supplements , please?

LAJ12345 profile image
LAJ12345 in reply to Condor13

I’ve haven’t done the math.

In NZ dollars

Hardys’ $577 for 3 month

Restore gold $350 for 3 months

The others I buy randomly, others in the family use various ones from my supply so hard to say. They range from 50c per day to a few cents.

I would say it is probably about $20 NZ ($15 usd) a day. About the same as I spend on food for him.

We don’t have any medication costs though

This caught my eye! "a few months ago he started on 2x30mg ambroxol x2 per day"

I've never seen anybody on such a low dose. I am intrigued. I have some Ambroxol and could afford to do 4 tablets a day.

Do you have any insights to share on this low dose method please?

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!

Ah. Actually, you are supposed to slowly ramp up to the huge dose. They have ramping instructions on the trial site. Thanks.

Yeah, we won’t be ramping up now he is feeling good as I don’t want to break him🤣

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