My father was diagnosed 4 years ago with PD.... 2 years before me. His symptoms are very different from mine. Both of us are LRRK2 positive. He is taking Sinemet 25/100 4 x a day. His apathy is by far the most bothersome non motor symptom... well at least to the family it is..... He will not exercise or do anything other than lay on the sofa all day long. He is definitely slow and stiff, but is able to golf and walk when he wants to. I convinced him to start B1 Thiamine 1 gram per day, and he takes B12 when he remembers. He has not opened the Mannitol I bought him. He wont see a naturopath and doesnt believe anything will help him. It is time for an intervention... for both him and my mom. The advice I have gotten thus far from you my friends, has been invaluable and I believe I am much better since starting the mouthful of supplements and duo coronet recommended. He is 80 and had a heart attack 3 years ago. He is slightly anemic, but otherwise healthy. Could you, would you please recommend the top 5 or more supplements that we could start with. Once he feels more like his old self, I am sure he will agree to see a naturopath and continue to seek out help. Thanks in advance!!
Supplement recommendations: My father was... - Cure Parkinson's
Consider Cinnamon. My report here: healthunlocked.com/cure-par...
Yes yes! Will definitely add to the list. One of my favorites from you park_bear big thanks
I have an old nutribullet and make a coconut milk, cinnamon (thanks to park_bear), manitol, resistant starch, and starting today bee pollen smoothie (with a little almond milk and some frozen berries) every day.
I just heard about bee pollen from Thomas DeLaur. Why did you add it Bolt? In my smoothies I also add lions mane powder. You might like that? And matcha powder for polyphenols. Matcha has way more polyphenols than berries although I love berries
I just figured I'd start bee pollen as I was starting Royal Jelly and Propilis and knew we had a jar of bee pollen in the fridge. I have Matcha Tea every day. I have added it to my smoothie also. I guess more would be more which would be better. I pop a couple of Lion's Mane capsules a day.
Ah, that's a good way to take Mannitol. I've been adding to hubby's morning tea but sometimes he doesn't drink the full cup. Could make a shake and add Mannitol and Cinnamon.
I was taking a capsule and isn’t notice any improvement. Does bulk really make a difference?
Did you read my full report? "A capsule" likely has about 600 milligrams. It took me 3 grams (=3000 milligrams) daily over 8 weeks to notice improvement.
Yes of course I did. Very very comprehensive and powerful. I have taken 3 grams daily since reading it months ago A cut and copy I have shared many times! Thanks again!
Magnesium would be at the top of my list as thiamine requires magnesium for absorption: "Thiamin, vitamin B1, is important for healthy body function. It is now understood that magnesium is needed for thiamin to work in the nervous system and make ATP/energy from carbohydrates. Magnesium and vitamin B1 are team players and both must be present for the Kreb’s/citric acid cycle to move forward to make energy, burning food for fuel, and hundreds of essential life functions."
It's very nice of you to be helping your dad, hope he improves and gets more active.
What kind of magnesium do you use faridaro?
I use magnesium l-threonate 1- 2caps/day and also in electrolyte mixture containing dimagnesium malate+magnesium creatine chelate.
Thanks! I use magnesium l-threonate also, and I also get magnesium (not sure what kind) in my butyric acid).
Is your electrolyte mixture Emergen-C by any chance or a different one?Thanks
First I have heard! I was taking magnesium at night. Will now add it to my morning regime as well! Big thanks!
Thank you for this info! I did not know! I learn so much from y’all!
Glad to help. I've been learning from this forum as well and so grateful for it.
I’ve been taking mag l-Threonate for a while but not with my B1. Should I be doing that?
I understand that you mean well, and it's very difficult to see a parent decline, but...aren't interventions for when people are acting irrationally?
There's nothing irrational about an 80 year old that is 4 years into a PD dx not wanting to see a naturopath. There's nothing irrational about him not wanting to try even more supplements (he is already taking at least 7 pills a day).
Have you raised the apathy with the relevant doctor? There are treatments that have mixed success (though are more likely to help than any of the supplements that will be suggested) and some risk (though manageable if given appropriate thought).
Thank you for taking the time to reply and for this informative link. I appreciate it very much. I didnt know what other word to use in place of an intervention. My family is very close, and thank goodness we have the support and means to get my father all the help that science has to offer. The problem lies within him. He has completely "given up" on life, family, friends, hobbies and that is obviously negatively impacting my mom, and all who love him so much. we are hoping we prepare packages of supplements and hand them to him before a meal, he will just take them. When he goes for his neurology appt, he says everything is fine... and that is why he is was not prescribed an SSRI or something for his apathy. He doesnt acknowledge he has anything wrong. Getting to see a doctor right now is quite a challenge, so we want to start with some supplements that have helped so many on this forum first.
I didn’t know your Dad has it too Missy. I’m in the same boat.
Sadly I gave up my researching on my Dads behalf 10 years ago bc he adamantly refused anything I suggested. Back then my research was really only MJFF and UCSF.
We are so blessed to have this forum!
Anyways, I have gotten my Dads caregivers to get him to take turmeric. His doctor is of the opinion that it has helpful.
I personally use it in powdered form and add it to my food.
Also, for anxiety & apathy I have found L-Theanine to be helpful.
Yes sadly my Dad has PD... His dad had PD, and my mother's mother had it! Thank you for this great suggestion. I take Turmeric too. A definite great addition! Thanks so much Christine!
I found mannnitol cured my apathy. Once you solve that your dad will then want to help himself. B4 mannitol i didnt care if i lived or died at least dieing i would of got it done with. Now I'm the opposite.
Tackle the apathy n you've cracked. If he not wanting pills etc thats ok use mannitol ad sweetner n leave others out for now. He may not like so much 'stuff' pushed on him
Thank you so much for your reply and honesty. Your push for Mannitol based on your own experience will most definitely be top priority for us! Wishing you continued good days ahead!
Is he taking any antidepressants or other medications too?
My top 5 if I have to choose though honestly I can’t tell whether it is mainly these or the rest of the combination he is taking that are doing the trick for apathy at the moment.
Hardys daily essential nutrients with added vitamers
Fish oil with high EPA to DHA ratio eg vitacost.com/vitacost-syner...
Thank you very much for taking the time to reply with this great info. He is not taking any other meds, because he does not acknowledge he is struggling with apathy. It is not always evident which supplement helps the most, but this list is definitely a good starting point!
His apathy could be a sign of depression too but if he can avoid antidepressants that is good as for my husband the antidepressants seems to make him get very apathetic. And then quite manic with compulsive behaviour then suicidal intent .
If it a bit of depression of feeling sorry for himself do you know what things used to really enjoy? The easiest things to be less apathetic about are things you really love as they energise you. I think it can be a bit of a snowballing effect. Once you start doing something you love you can then find the energy to do the things you love less but should do.
He may be frozen in a state of not doing what he enjoys because he should be doing something “worthwhile or useful” and can’t find the energy to do those. Give him permission/encourage to pursue fun things and he may then start doing other things that he needs to like exercising.
Thanks so much for your reply. He is quite a good golfer, and when pushed to go, has a good time. He just doesn't take the initiative to do anything. That is the big stuggle. He doesn't seem to be depressed. He voice is becoming quiet because he doesn't use it, and he is forgetting words, which perpetuates the problem because he doesn't want to be social to avoid the embarrassment.
Has he got a friend that can golf with him? Or can you? I’m sure there are a group of older men who are regulars so maybe he just needs you or your mum to go with him until he finds his clan. Or maybe mini golf? If it’s something he can thrash you with all the better. Get him doing stuff he is good at and feeling better about himself he will be more inclined to do stuff he should do. If you don’t like golf and don’t feel good at it so don’t want to do it maybe that feeling you have is a little like what he feels about having to do something he isn’t comfortable with. Can you ask him to teach you ? The feeling of being useful and helping someone else is also very beneficial. You might have to sacrifice a bit of time to make it it happen to do something you arent very interested in if you want him to get back into it.
Or maybe your Mum growls at him for playing golf instead of doing useful things around the house. Talk to her about the importance of him doing fun things to energise himself and to try and be the man he was.
He's got loads of people who want to golf with him, he just lacks the motivation to want to get up and out. That's the big struggle sadly
Do they ask him to go and he says no? Are you able to talk to his closest friends to say what’s going on and ask them to persist in asking him? He might say no 9 times then yes the tenth. Or can they ask him to do a shortened course? Maybe 9 instead of 18 holes or just some putting practice? I find it’s like a spinning top winding down. Once it is nearly stopped it’s hard to get going so you have to find the smallest thing he can or will do and build up. Maybe it’s not golf. What else did he do in the past?
It’s winter where you are? Mine always goes into hibernation in winter that makes it worse. This year he has the red coronet hat light therapy and a bright sun box light I put on first thing in the morning.
His apathy is much reduced and 2 supplements that I think might have helped are rhodiola rosea and previously horny goat weed, although I’m not sure if you can take HGW with sinemet. But these have been in conjunction with all the others he is taking or the light so maybe coincidental or a combined effect. I don’t know that just one supplement will cure all.
I think it takes a long time to wind down to this point and it will be a long slow process to wind back up so don’t overwhelm him with lots all at once. Just take it very slowly with new things.
You've been so helpful, and I appreciate it so very much! I will definitely look into the rhodiola rosea and horny goat weed. And will seek advice on whether it may interfere with his sinemet. We have cold yucky winters here in Toronto, but he is a snowbird and spends the winter in Florida so no excuses there! He was a builder prior to his diagnoses. He was on job sites watching over things until he felt too unsteady to walk around the sites safely... then he gave everything else up too!
Sounds like he has lost his purpose. He needs a new purpose so he feels useful. So has he been in Florida this winter?
How old is he? Is there any job he could do using his skills and knowledge without the physical work? I can understand feeling unmotivated if everything I used to be good at isn’t possible. Especially with the PD apathy layered on top. So he might need extra help to find his way again. Sounds like you are doing all the right things for him. He is lucky to have so much family around on his side.
I feel for your father, he is after all 80years old. Apathy is very difficult for all concerned. But putting expectations or pressure on him will not cure him of it. He is not being lazy or putting it on. He needs you all on his side. I dont think gregorios approach will solve anything but LAJ has many good ideas. You can muck around with supplements which may make you feel better but will probably have little effect on your Dad. The exception would be mucuna or an increase in his levadopa. His voice is not quiet through lack of use, it is another PD symptom as is his trouble finding words. Just love him and make the time you have left with him as enjoyable as you can for all.
Ofcourse we know that PD strips us of many things. There are loads of things he can do for his voice, but doesn't. He is unmotivated and lazy... He has many good years ahead if we can get him to a place where he believes that too. When he wants, he can get himself together and play 18 holes of golf and scores better than someone ⅔ of his age. We dont want to put pressure on him, but we are hoping with a small cocktail of supplements it will help him to want to help himself
Hope you find the magic bullet. Voice problems interest me. I have completed 2 LSVT programs but still I can barely make myself heard for some of the day. The interesting thing is it seems heavily effected by dopamine levels. I am perfectly fine with normal voice for part of the day.
So sorry to hear this. Hope a regime of supplements help him.
Take him to a Turkish restaurant with a belly dancer! He needs to laugh more and watch a bit of entertaining television. I don't like to walk either - more disturbingly I don't want to shop! and me only 76.
I am sorry but I get really pi**ed off when I read posts like the one above. It reminds me of people say they have been trying to stop smoking for years but cant do it. If you value your health you do whats necessary to protect it. Your father needs to get off his ass and do some proper exorcise and he needs to be told this in very hard terms, Tie him to a chair and make him watch the videos proving it is about the only thing we PDers can do that is proven to help.
Missy0202, I dont doubt your concern for your Dad but you need do some serious research, it's all here on this site.. Good luck, wont be easy but you can only try, Time for hardball. If he still wont listen then you can know you did your best
Thanks for your reply. The biggest problem is, he doesnt value his health and has no motivation to better his health or well-being. Other than encouraging him, there is little any of us have been able to do to "get him off his ass". We have bought him those pedals that he can use while watching tv..... got him a trainer to come to his appt....played hardball and left him home when he didn't want to join the fun.....lost it and threatened.... he doesn't care about anything. I visit this site looking for answers all of the time. Most of the information is way over my head so I simply asked for guidance with a list of supplements that we feel we could start with. I think once he is feeling more like his "old self" he will be more receptive to other treatments.
My heart goes out to you, impossible situation to be in but 'God helps those who help themselfs'. I do know if he got on a Keto diet he would have a lot more energy but I guess he would refuse that. Manitol has helped me, just put it in everything he eats and drinks. There are dozens and dozens of suppliments recommended by all of us on here but without a willing particapent I'm afraid, in my opinion you might as well put them in the bin. you could try NADH, NAC, B1, Macuna Pruians, all easy to get, I use all 4 BUT i exorcise as much as possible, also fast walking, I stopped my meds 3 yrs ago...I wrote this...healthunlocked.com/cure-par...
How able are you to be involved in the day to day management of the regime? Or is your mum capable of managing it? It is quite time consuming making sure things are taken at the right time every day. Get her a large week pill tray from a pharmacy to put anything in he is taking and if you are close by you can load it with the regime each week. Start with the minimum and when that is bedded in add another. She can just bring the pills to him with his cuppa and say here is your drink and a vitamin. He might take it if there is no decision to be made. If you start saying you should take this or do you want to try that it will be all too much effort. But he might agree to take things if there is no effort and he doesn’t have to think about it. In front of telly is ideal as he will barely notice.
Importantly don’t get cross with him for being lazy or it will just feed into his feeling of self worthlessness if it is the same thing my husband went through. Reward any small effort or useful thing he does positively.
I’ve tried every method of dealing with the apathy. Ignoring it and getting on with my stuff, nagging, scare tactics…saying you will end up in an old persons home, begging. In the end I found the best thing for my husband is encouraging him to do as much of the things that he likes as he can eg bridge at the club means he gets to chat to people. Watching sport, reading eating things he likes (that aren’t too bad for him as the diet is strict now) and smiling at him a lot and laughing with him eg watching a funny show. Trying to make him talk about things he likes talking about like bridge hands, football even though it’s not my thing. Getting him to tell stories about when he was young especially where he did something fun, or something he was proud of, eg at work, or when he was a teenager etc.
Find the thing he loves to talk about and be interested in it. After all if life has shrunk so small that it has nothing of interest any more why wouldn’t you be apathetic.
Gosh, you are so right! and thank you for taking the time to reach out with such valuable information. We have tried the same tactics, without success. There are 4 daughters and we all live within 1 km from each other, and my parents. We bought 4 weekly pills boxes and we will fill them so all he has to do it pop them! He is very capable so watching him wither away for lack of motivation is the most disturbing part. I have accumulated loads of great info from this wonderful forum, and I am excited to begin the process to get him well again.
In her book "The Magnesium Miracle" Dr Caroline Dean covers a great deal of territory.including Parkinsons which she devotes two pages 204-205. What is the difference between normal brain function and the brains of people with Parkinsons." High levels of aluminium. Numbers of research papers have made the connection between levels of aluminium and neurological diseases like alzheimers, dementia, and Parkinsons,
Aluminium is a known neuro toxin. How do people accumulate aluminium in their brain tissue? Cooking with aluminium pots and pans, antiperspirants,food wrapped in aluminum
foil, tap water with a high aluminum content. So cut out these sources of aluminium intake
and drink Fiji water which contains a form of silica which binds with and removes the
aluminum from the brain and is excreted in the normal way through urination. According to Prof Exley, the silica in Fiji water is in a form which is not available in ordinary supplements.
So what type of magnesium is the best absorbed. Dr Dean recommends magnesium oil
which is spray on. Its magnesium chloride. That way it is better absorbed than by pills which have to go through the digestive system and much magnesium is lost. What dose? That has to be discovered. aim for 500mg with similar calcium. Magnesium allows calcium to be absorbed. B6 50-100 mg aids in the absorption of magnesium. Consider this magnesium
oxide has a 4% uptake. So a 500mg tablet would only provide 20 mg of magnesium.
Magnesium citrate is an alternative if spray on is a problem.
Interestingly when monkeys are fed a diet high in aluminum and low in magnesium and calcium they become apathetic. So how do you get a family member to take the remedy
mix it in with a drink or food. A nice vegetable magnesium,calcium soup.
Husband and I use Dr. Dean's liquid magnesium (ReMag) and minerals (ReMyte). They are both excellent products but bitter. .
Finally a product I can find in Canada!!! Thanks!!
ReMag was not approved by Consumer Labs due to elevated lead levels. That was 2 years ago and I would call the company to see if they took action to reduce lead to acceptable levels.
That gives a whole new meaning to the phrase, "Get The Lead Out"! 😩😩😩
The following is her reply to your comment about excess lead in ReMag:
Brenda Campbell (RnA ReSet)
Aug 17, 2021, 10:29 AM EDT
Hi, . . .
Thank you for contacting RnA ReSet. Brenda with support responding today.
Thank you for your email! I know this is VERY confusing for the consumer and the last thing we want is to cause alarm or engender confusion.
And actually we were confused for about a week until we sorted out what was actually going on - especially since Dr. Dean's position - well, our whole company's position - is to Do No Harm. I mean, that is the VOW that every doctor and naturopath takes and Dr. Dean is really serious about this commitment.
So, here is what we had to reconcile:
As a dietary supplement manufacturer - we are governed by the FDA. And we have to respond to the cGMP guidelines for safely manufacturing products - which is what we do all day every day - and we post those results on our website, link below. All of our Certificate of Analysis are posted on our website for full transparency, the third party testing you mentioned are these results.
Consumer Labs failed Lot 0219-16 ReMag- for exceeding the lead allowance - not for the FDA or for dietary supplements - but for groundwater as established in 1986 in California Prop 65.
The Lot - 0219-16 - was tested as LOWER than the acceptable level of the FDA by half - because we've gone out of our way to remove lead from all our products - but since they do come from the earth - they are going to have trace - and that's what a microgram is - trace levels of lead in them.
So anyway, here's where it gets interesting -
On the CL website they put these words:
When testing for lead, ConsumerLab uses the State of California's Prop 65 limit, above which a warning label is required on products sold in that state (the only state to have such a limit). That limit is 0.5 mcg of lead per daily serving. However, based on settlements of cases of lead contamination in California, which have allowed somewhat higher amounts in products with inherent contamination issues, ConsumerLab allows somewhat higher amounts in products not marketed for children that contain minerals, whole parts of herbs, or for which serving sizes are 5 grams or more.
So - it's weird. Because they say that they ALLOW higher amounts in products that contain minerals - and disallowed ours.
So, since we are safe - and always have been - we actually conducted our own investigation of the products tested to determine if our product was, in fact, high OR if they took an exception to our product because we have a child's recommended dose on the label. After testing the other products what we found out is that some of the other products actually tested higher than ours did. So what that tells us that in fact they made an exception to the adult dosage of those products but because our product has a child’s dosage on it they disallowed ours.
Where we are now:
1) ReMag has always been safe and FDA compliant as verified through 3rd party tested since 2012.
2) It is our standard and customary manufacturing process to remove excessive lead and heavy metals from our raw materials and will continue to do so.
3) Consumer Lab's took exception to our product because of California Prop 65 labeling requirements for child's dosing and acknowledged the adult dosing was unlikely to cause harm.
4). We are aware of the California Prop 65 0.5 mcg standard for adults and children and have adjusted our product labeling accordingly.
5) We note that during our investigation we tested all the same products and noted that several came back with higher lead levels than that of ReMag but were exempted from failure because their product labels did not contain a recommendation for a child's dose.
I hope this is helpful! Let us know if you have any additional questions.
Best of health to you!
For Pete’s sake let him alone. He is old enough to choose how to spend his time, and if is to do nothing, so be it. I suspect you are bullying this poor old man, with your fussing and naturopath potions.
In addition to my previous comment. As many people are aware modern farming methods are destroying the land and the food we eat. Spraying toxic weedkillers, herbicides etc likeGlyphosate on crops which is also in garden pest killer Roundup, has been proved to be carcinogenic and now thousands of people who got cancer have lodged claims in the USA against Bayer the new owners of glyphosate. Why the government, who are trying to save people from Covid while ignoring a real and present danger like glyphosate which for example has been found to be present in breast milk in a study done in Germany is inexplicable.Large settlements have been made to people who got cancer. The water is also toxic. Treating it with chlorine and ammonia to kill bacteria combines to make Cancer causing Chloramine. You may have noticed the adverts, I saw one near a bus stop claiming that one in two of us will get cancer. No wonder, with the poisons in the food and water. not to mention toxic air quality in towns. So what to do. Eating Organicically grown food is a must. Using water from wells in the country like Highland Spring which comes in a glass bottle is a must. Yes it is somewhat more expensive but isn't ones health worth it?
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