My 68 year old husband was diagnosed with Parkinson's 2 years ago. He takes 1000 mg. B1, manitol, glutithione, mucuna pruriens, and other vitamins and supplements. He exercises (walks) daily. At first, the main symptoms were physical like tremors and right arm that doesn't swing. For the past 9 months, I have noticed extreme apathy. When I ask him what he prefers to eat and give him 2 or 3 options, he usually says, "I don't care, whatever you want." He used to compliment my food, but lately he eats in silence. When I try to make conversation, he doesn't respond, so it's like talking to myself. It is so lonely. I still have a husband physically, but it's like I live alone. Is this what I have to look forward to as a spouse of someone with Parkinson's? We have been married 43 years and prior to his diagnosis, conversation was something we enjoyed.
Apathy: My 68 year old husband was... - Cure Parkinson's
Apathy
Hi, I seem to see myself. From what I learned apathy is typical of P. and is a close relative of depression which affects 40% of pwp. I have partially recovered by taking an antidepressant which I am trying to gradually reduce.
So you are still looking for healing. If you are hoping it will come via alternative therapy I wonder how long you both will try. Sounds like he lacks dopamine, the feel good hormone. He could increase his mucuna or even be a bit controversial and try the gold standard treatment sinemet. There is also as Fed1000 says antidepressants because 40% or more of us suffer depression.
Agree, he should using one or another levodopa preparation.
No need to dis the supplements - high-dose thiamine has helped me quite a bit, and Dr. Costantini himself recommended combining it with levodopa treatment.
PB,
I guess I cant be doing with those who keep trying alternatives which are not working. I often wonder when or how they decide to use conventional. Once you have made a stand it can be hard to decide when is the right time to give up as it may be seen as giving in.
Why the need to criticize other approaches? I find that to be generally harmful as different therapies - alternative and conventional - work for different people. You are making the assumption that at some point, people who try alternative therapies will see the error of their ways and return to conventional. That has not been the case with my partner. He was diagnosed nearly 11 years ago, follows a careful alternative protocol with a Naturopathic doctor and has had very strong results.
Hi Katy, can you tell us his protocol. I'm 10 yrs. diagnosed and take sinamet and macuna. I excercise everyday and don't eat gluten. I'm doing ok but I'm starting to need more medication. Thanks, Bev
Frequent comments/experiences such as your somehow completely escapes her in over 10 years. None of people's reported success convinces her as valid "evidence" and continues to spread the misinformation (that she claims to concentrate on correcting) that natural therapies apparently haven't done much good.
IMO Antidepressants often have devastating side effects that are added to those of drugs for PD and its symptoms and it goes beyond a favorable benefit / harm ratio .
People who prefer a quick payoff or immediate symptomatic relief without serious due diligence tend to pay in the long-run. Amazing how obtuse some are to believe nutrition/supplements don't help at all.
Can you elaborate about these often devastating side effects for pwp GioCas?
Who, me? 😀 Mention one and you read the leaflet, you find them written there.
I was hoping for personal experience not leaflets which always have Information just in case because I don't want to be sued ! ie to protect the drug company as much as to inform the patient.
Hikoi,
you are already at the third version of this last post.
I hear your nails screeching on the glass! 
“Protect the drug company” from what?
However if they are written they are true.
To protect the company from lawsuits and liabilities - that’s why they list all known side effects on the pamphlets For certain individuals with repeat depressions that won’t wane and unable to address the root causes (not easy) the drugs can be life saving, especially to deter suicidal actions. However, anyone who really investigates the drugs will learn that there are consequences and they’re even now continuing to publish the long term major hazards that they didn’t realize before. As with all things one must research and make careful decisions with the favorable benefit/harm ratio considered, as you’ve stated. What one must not do is to be hasty and simply take the brain altering drugs because it worked for “someone else” when there can be safer answers and remedies that should be hashed out.
Have you checked his b12 status lately? B12 deficiency (common in PWP, along with b6) can cause depression and apathy, so you may want to try sublingual b12 to see if helps. With the Covid lockdown, vitamin D3 deficiency can also seriously worsen depression, so either supplement or more effectively go out for daily walk during nice sunny days with your husband to soak up the vitamin. You may also want to check his thyroid health (another cause of depression), and consider supplementing Lugol's iodine and selenium (helps thyroid). Low dose Litium Orotate 5-10mg may also be worthwhile supplement since lithium deficiency could trigger depression/apathy. I also recommend you add Jarrow's Zinc Balance to be sure that he has enough zinc and copper in a proper ratio to activate the nutrients.
If you have time, I suggest you read the below link to understand the depression as it relates to PD. Dopamine deficit alone isn't always the cause for depression, and it's very easy to overlook nutritional imbalance or dyshomeostasis that plays a major role.
Antidepressants saved my life. I know they can have bad side effects for some, but for others they are, literally, a life saver. Literally.
The only thing that helped me (my mood) more than anti-depressants was when I started taking carbidopa/levodopa.
I had depression, anxiety and severe insomnia 18 years prior to developing PD symptoms. I never had negative side effects from anti-depressants, and they helped a lot over the years. I resisted taking them heartily for the first several years and tried every "natural" remedy I could find with little substantial relief. Finally when I "gave in" and started the anti-depressants, I regretted all the time lost. In addition, the brain develops ingrained patterns based on experience, so the depression was much harder to beat when I finally got there. I understand that taking anti-depressants earlier in the game can help avoid this, and help avoid repeat episodes of depression.
When I started carbidopa/levodopa after resisting that for three years (go figure), it resolved the residual depression and anxiety that the anti-depressants never had. And my dose of Anti-depressants is now much less than before.
I'm not saying that there aren't possible negative side effects from these drugs. But it's also VERY bad for the body/brain to be in a continual state of depression and anxiety.
Those who find their way without them, more power to ya. But best not to try to convince others that that is the only way.
Well said rebtar
Excellent point, Rebtar. My MDS prescribed Paxil before he prescribed Sinemet.
I would agree it's worth trying the carbidopa/levadopa - Sinemet or Madopar. When I first started on Madopar shortly after diagnosis three years ago, it took a few weeks to have an effect on my tremor, but my low feelings and anxiety lifted very quickly. I wouldn't say I am full of 'get up and go' now, (I was always a bit apathetic even before diagnosis!) - but if I miss a few doses (which I sometimes do because of forgetfulness), my tremors don't get worse again, but I notice that my mood drops and I feel more apathetic.
I’m convinced medicating/taking supplements/alternative therapies are more of an art form than a science. Just do your best to be informed and try what you think may be helpful.
Yes absolutely agree. It’s certainly not easy and could overdo in either extremes if not carefully and intelligently attempted.
Articles such as below could help narrow it down, but even then the trials and runs must be monitored for pros/cons with additional comprehensive research.
Clinical Depression is often a feature of PD . But it’s difficult for the sufferer to acknowledge this and accept treatment . . But it’s well worth getting some medical advice . My husband who has had PD for over 10 years has medication and it works!
But very tough for you both I know
I had apathy real bad, What helped me was starting on a small amount of lithium orotate (5 to 10 mg per day)and carbidopa/levodopa.(25/100, 1 per day and one c/L 25/100 ER per day) Dont let your husband deprive himself of dopamine, its a bad situation for both of you. Mucuna may not be enough. Another important thing is to get him out of the house and try to be around other people. As much as my job stresses me out, I find that I dont get very depressed and apathetic at work. Anxious, yes, but thats because my job is very stressful! (Cardiac cath lab and interventional radiology tech)
Good luck! I hope you can help him pull out of it, its no fun for anyone!
That's good advice to get him out of the house. I'll keep that in mind too. Thanks.
The Lithium is great advise. I was already taking it for my own anxiety when I read that individuals with Parkinson's would also benefit. My husband who has Parkinson's is now taking 5 mg of lithium orotate one in the morning and one at night. We are going the alternative route as it is our understanding that whole mucuna pruriens comes with other helpful nutrients. Plus there are no down sides. You may also benefit by adding 5-htp as this link below explains:
Apathy is one of my top 5 disabling symptoms. Its soooooooooo hard to get going on anything but he will have to work on it ...try a hobby or puzzles etc......good luck ...hang tough. I take adderall for fatigue and apathy. Try turning off the TV and putting music on ..........
I remember you said you’ve even tried electroconvulsive therapy. I’m aware now it’s nothing like how people envision the one flew over the cuckoo's nest, but wonder if it helped you significantly?
Try one personally, in Turkey if you not agree they do it for free.
Are you saying you’ve tried it too? Any effect?
NO.When I was little child, It was enough for me to put my tongue in the electrical socket to understand that my neurons did not get along with electricity. Very painfull. :-))
Ahhh- that sounds like Jack Nicholson style!😫
sbillinghurst.files.wordpre...
Most procedures nowadays are performed under anesthesia.😅
i am still using it for PTSD......i had a dystonic storm on an island off alaska in the bush where we lived and that night after the medics left my wife took my daughter told me she couldnt deal with PD and left. Havent seen them since. So i use tens unit for pain...muscular....and electro therapy with a therapist to control the ptsd.....all voluntary..hehehe.........hang in there
My husband had extreme apathy. He improved when we got his B1 up to just 1000mg. But it returned in spurts. As we've gotten him to 2000mg, the improvement has been more consistent. It seemed that his sleep worsened with 2500 but we may have upped the dose too soon.
He wasn't using levodopa, otherwise he would have continued that as Dr C recommended.
We are sticking with the B1 therapy for now so that we can measure his progress with that.
We are still working on his dose. He has taken B12 sublingually and Low Dose Naltrexone for a few years. But, it has been the B1 which has been making the difference now.
If not already, I'd consider adding zinc and magnesium to his stack. B1 (the engine spark) probably helped make available what was blocked with the deficiency but Zinc deficiency is also a high suspect in many cases that prevents proper enzyme functions, and the deficiency is not always easy to detect/correct. Magnesium, especially the l-threonate (for passing the BBB), is a required co-factor which also helps with sleep, but I'm sure you're already aware.
ncbi.nlm.nih.gov/pmc/articl...
ncbi.nlm.nih.gov/pmc/articl...
medcraveonline.com/JPCPY/JP...
Thanks for this. Yes we use magnesium (L-threonate included) and zinc. I'm rather careful with zinc and only used it once a week until recently. My husband sleeps well, going to bed at 8:30 or 9 and sleeping until 6am. At bedtime he takes Mg threonate, 1 aspirin, pregnenolone, and 40 mg of lipothiamine.
He started the lipothiamine before I found HU. He said he felt it improved the quality of his sleep, not necessarily helping him sleep through. We've attributed the longer sleep to the high dose thiamine. But who knows right.
Yes, I also take TTFD that readily crosses the BBB and doesn't depend on thiamine enzyme transporters (why a high-dose B1 Hcl is needed for passive diffusion). I used to take a high dose Benfotiamine + TTFD (Allithiamine/Lipothiamine) while playing a catch-up with deficiency for several months, but eventually noticed inflammation (especially back pain) and other methylation/imbalance issues that caused me cut down on the dosage. Now I take no more than 50mg TTFD per day and it works fine (no more deficiency or restored enzyme function). As for zinc, I was the same being very careful but after I've upped the dose with Covid, I've noticed better health with consistent supplementation, including very regular bowel movements - I assume my zinc homeostasis has changed for the better, possibly with the aid of occasional quercetin. I alternate between various forms of zinc including Zinc Balance (for copper) and also enjoy the sublingual form below I've tried through Amazon (it used to be around $5).
amazon.com/gp/product/B07BF...
Rescuema,
I need your wisdom My husband had B1 IM injections for a year or so (during the time Dr. C. was alive). He was doing fine but he had to up and down his dose several times.
Anyway, we decided to start oral B1. He is down to 200mg a day, but I have been thinking that switching to Allithiamine would help him more (100mg X 2/d). He was on Allithiamine for a month. Do you think Allithiamine would benefit him just as much as Thiamine HCL?
Early this year, he had his plasma B1 checked and it was high normal.
Thank you!
Hi Despe,
I wouldn't hesitate to switch to TTFD. As Dr. Lonsdale had stated, there is no difference between allithiamine and B1 Hcl from a biological activity standpoint once any B1 form is where it needs to be. TTFD has an advantage because it has an ability to pass through the lipid barrier of cell membrane, which is how it readily crosses the BBB without transporters even for those who are genetically compromised. B1 plasma test doesn't correlate with B1 deficiency in the brain, so I wouldn't waste money for testing while supplementing unless you can find a lab that measures transketolase enzyme activity (currently not in the US). As far as I'm aware, Dr. Constantini was fine with TTFD but he advocated B1 Hcl for its ubiquity and I assume for his standard patient monitoring.
200mg twice a day is on the high side for TTFD but that shouldn't be required unless he has an existing deficiency. I would cut it down to 100mg or even 50mg for TTFD and see how that works out since he had been on B1 for a while. I also advocate supplement rotation - I even rotate my multivitamins and regularly skip other supplements.
Rescuema,
Thanks and sorry for my delayed reply. He never took 200mg TTFD, he was taking 100mg divided in two doses, am and pm. At times, when he doesn't want to take any vitamins, I let it go.
Guess time to rotate, then.
I am so sorry you are going through this illness with your husband. My husband also has a Parkinsonism, PSP. I live in a silent world. Sometimes, on his good days he will respond with a yes, no, or a word . He can only walk with a walker and with help. I cannot leave him alone due to falls. Everyone says to get help but with Covid, I think there is more risk than gain. I wish I had some advice but I am not sure there is any that would help. Your doctor may order an antidepressant if you think your husband would take it. This is a horrible disease and certainly can cause depression in the caregiver and patient. Good luck.
I’m very apathetic as well. I sit or lay on the sofa a lot. I don’t talk much during meals because I feel like I don’t process the same as I used too. Frankly, I don’t understand why I say stupid things. I do very little. The best I can say is to encourage anything he says.
A few months back I asked my husband why he was talking so little and told him how I used to love listening to him talk. In his case it was that his speech was so slurred. It really helped me to know his reason. Maybe part of it was apathy too.
His speech has improved overall, but at times it's back to mush.
Have you tried Mannitol. See my posts and current research for PD. It turned my husband's life around. He's off the bed, talking, reading , crosswords, jigsaw puzzles. It shocked our neurologist.
Hi gwendolinej! What is the mannitol that you use? What is the regimen you follow ?
Hi there, we use Sosa mannitol, sauced here in Australia, but out of Spain. Some members have sourced it direct, depending where they are.
We are off to see the neurologist tomorrow. I want to discuss stopping some meds. As nothing was working when we tried mannitol, I reckon we should cut them out or down. Of course, it's possible that the mannitol may be helping something now work. 🤔
Thank you Gwen and yes, Ive read some of your previous comments on mannitol with interest. I ordered some a few days ago, and then, cancelled the order.
Reason is that I want to stick with high dose thiamine so I can gage how it works.
I am keeping mannitol on the back burner though! Thanks very much.
Speaking from experience, yes, try one thing at a time 👍
Have you tried Mannitol. It turned my husband's life around in a few days. Off the bed, talking, reading, crosswords, and more.
I am sorry to hear you and your husband are experiencing apathy. It is very difficult for both parties. I experienced apathy a few years ago and I have been on an anti-depressant ever since. I have found it helpful. Over 50% of PWP experience depression. That said, apathy is distinct from depression.
Hi, My husband has experienced loads of apathy. Normally totally into life in general, even the smallest task he took on with such pride and caring. Best lawn in the neighborhood, etc.....I have been trying to find answers for years. Neurologist interns tell me that apathy only happens to the elderly....of course they know better...ughghgh! My husband was in his early 50's. Be careful with the, oh he is depressed, diagnosis, personally, I see a big difference in depression and apathy but few understand this. Depression is full of regret, guilt, sadness and yes lethargy and loss of interest, however, apathetic people really don't care that they don't care. They simply don't give a shit...to be blunt. I think this is all PD related from a lack of dopamine...but increasing sinemet can create other side effects and if you give him antidepressants, use with caution, because most will cause drowsiness. My husband also has sleep apnea from being overweight and not caring about exercise or anything for that matter.......so vicious circle. I got him off the anti depressants which were really doing him in.....not saying don't try them...use with caution is all. He is a better know...not sure why, but not the same man. I read that people with Parkinsons and apathy generally don't do well, because they just don't have the motivation to help themselves. Really hate this disease...interested in ultrasound therapy now...They say a schedule helps. Force him to go for a walk if you can. Also, it is important that you keep in touch with friends and family and look after your own health. I sunk into a deep depression which didn't help anyone. To be around someone who really doesn't care about anything can be very difficult. I had to remind myself everyday that a disease is at fault here, not him. Prayers are with you.
Thank you for taking time to write. It just helps to know I'm not alone in this discouraging journey.
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