I wonder if any of you can share some advice, ideas or insights here:
My father, who’s 76 years old, suffers from Parkinson’s for the last 1.5 years and is treated with Rasagiline (Azilect). He recently had COVID-19. The acute disease stage was flu-like in symptoms and severity (so, no fun, but not too bad either; note that he got Paxlovid starting from the 3rd day of symptoms). However, even though he recovered from the acute COVID stage more than 2 weeks ago, he still suffers from severe fatigue, and the depression he had (one which he refuses to admit, unfortunately) since having Parkinson's has gotten much worse after COVID (plus, I suspect he may have become apathetic, but I'm not sure I can differentiate between depression and apathy). There are other changes (e.g., worsening of the slowness of movement, post-exertional exhaustion etc.), but I find the fatigue and especially the depression/apathy the most troublesome.
I should mention that we are from Israel and that my parents came back from a trip to California just 24 hours before finding out they had COVID (my mother was almost asymptomatic). So, they were, indeed, jetlagged (there’s a 9-hour difference), but it has been some 3 weeks since they got back and, nevertheless, my father still goes to sleep in the middle of the day (for a few hours), and his nighttime sleep is poor – he gets up at around 3 a.m. (instead of 8 a.m.). Importantly, up until 3 weeks ago he practically never slept during the day, and never had major sleeping issues at night. I suspect one reason he goes to sleep during the day now is that he became depressed/apathetic and, because nothing interests him anymore, he has nothing to do, so he goes to sleep.
I'd love to hear some of your thoughts. In particular, I wonder what you think about the following (based on your experience, things you've heard of, or anything else):
1. Do you think it's likely that these symptoms (that started/worsened with COVID) will resolve/improve on their own?
2. Do you think changing the Parkinson’s treatment (e.g., starting him on levodopa) can help? Note that, regardless of the post-COVID deterioration, I suspect (though I can't know for sure) that the (positive) impact of the Rasagiline on my father's symptoms (motor and non-motor) is mild at best.
3. Do you think some other, non-Parkinson's-related type of treatment can help him? What about some kind of stimulant (for instance, Provigil), to at least keep him awake during the day and get him to be more energetic?
4. I really want my father to start taking anti-depressants, but the problem is that he won't admit he is depressed. Also, my mother says the very suggestion of it would really offend/sadden him, so I'm worried about even trying. Do you know if there is any type of antidepressant (or even a medication not defined as an antidepressant, but that can nevertheless help improve one's mood) that is sometimes used to treat any type of Parkinson's symptom that is more "physical" (tremor, slowness, even sleeping problems...)? Because he will agree to take it if the doctor says it's for physical symptoms.
Best,
Omer
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omers
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The treatment of Long Covid (LC) symptoms is in its infancy, but fatigue is one of the main symptoms of LC. Imo, the following three supplements are likely to be of significant benefit.
It may be best to initially concentrate on the post Covid-19 fatigue first and then if you can get the fatigue resolved, see if that also resolves the depression issue. On that note, I think the combination of Alpha Lipoic Acid (ALA) + CoQ-10 and Acetyl L Carnitine (ALC) may be of some benefit for post Covid-19 fatigue and other symptoms :
' Thus, fatigue can possibly be relieved by restoring serum carnitine levels through carnitine supplementation [12]. In the present review study, it is hypothesized that l-carnitine can also be effective in relieving fatigue in cases with COVID-19. '
' A FSS complete response was reached in 62 (53.5%) patients in treatment group and in two (3.5%) patients in control group. A reduction in FSS core < 20% from baseline at T1 (non-response) was observed in 11 patients in the treatment group (9.5%) and in 15 patients in the control group (25.9%) (p < 0.0001). '
Thanks a million for the detailed and useful response.
Funnily enough, my father already takes CoQ-10 for many years, because his family doctor told him to take it for his cholesterol (on top of being treated with simvastatin). However, he does not take ALA, nor does he take Acetyl L-Carnitine. I'm gonna take a deeper look at the papers you've cited!
If he is taking CoQ10, it might be a good idea to make sure he is taking the form called "Ubiquinol". This form has superior bioavailability to standard CoQ10 and this is important for older people to insure they are actually getting enough.
As long as you are going to read the study, you might also like to read this other new study(September 2022) that suggests that vitamin C and L-Arginine are helpful for alleviating Long Covid symptoms :
' This survey is the first to show the beneficial effects of the combination of l-Arginine and Vitamin C in Long-COVID. Our investigation was based on a robust rationale, i.e. targeting endothelial dysfunction in Long-COVID. Indeed, endothelial cell infection with consecutive inflammatory cell recruitment and endothelial dysfunction could explain the impaired microcirculation observed across vascular beds in COVID-19, triggering vasoconstriction, ischemia, and a pro-coagulant state [92], [93], [94], [95]. '
And, unfortunately, it is ubiquinone, not ubiquinol. I'll see if I can buy him another one (with ubiquinol) without him objecting too much to the change.
It seems that your father needs a reset of circadian rhythm which is a sleep-wake cycle and the best way to regulate it would be by exposure to early morning sunlight for may be 30 min. This reset may help with depression - you can look up for more information online.
I've had covid 4 months ago, my symptoms were mild and lasted about 5-7 days, however for about one month afterwards I felt quite exhausted which was very depressing - it's hard to enjoy life when you are dead tired. I am 71 and since your father is a little bit older I would give him more time to recuperate and for now wouldn't worry about the naps during the day - may be his body needs them for recovery. Morning coffee or tea may provide some energy boost if he doesn't take them already. And I agree with Art's suggestion - those supplements have good records in PD patients and definitely worth trying.
I'm happy to hear that your post-COVID symptoms (which overlap - at least partially - with those of my father) resolved on their own after a month or so. That gives me hope that my father's symptoms will also resolve. Even if it takes, let's say, 3 months instead of 1 month, that would still be fantastic.
My father does get sunlight in the morning, and he even started going on a 1-2 hour trip with his car recently (before COVID he used to do those trips on foot, but now he can't, he says he gets tired already after walking some 300 meters [~330 yards], as opposed to the 5-6 miles he used to walk before getting COVID). I presume the mood- and circadian clock-related effect of sunlight aren't strongly inhibited by the windshield (right?), so I guess his daily car trips are helping (with respect to the circadian rhythm).
Do you know if there is any type of antidepressant (or even a medication not defined as an antidepressant, but that can nevertheless help improve one's mood) that is sometimes used to treat any type of Parkinson's symptom that is more "physical" (tremor, slowness, even sleeping problems...)?
Sleep is tricky, but the other stuff can reliably treated with pramipexole. Google:
Pramipexole parkinsons depression
And read all about it. It is in widespread use as both a PD monotherapy and in cconjunction with other PD meds.
Covid impacts aside, at 76 and 1.5 years post dx, there's a fair chance he is undermedicated if only taking azilect.
Yeah, I agree. I think the "Azilect-only" regimen was fine until a month or so ago, but not anymore.
About Pramipexole - what worries me is extreme side effects. Especially if it gets to aggression or suicidal ideation. I wonder how common such things are with Pramipexole.
There are side effect risks for sure. In my view the possible rewards are worth the risks for PwPs strugglinstruggling with depression, apathy or other mood issues. Being 76 with PD and depression aint much of a life in my view.
you have described my father to a T. He has had pd for 6 years dx at 76. He is 3 years ahead of my diagnosis. He also does not admit to suffering with depression and apathy but it is evident to everyone around him. He sleeps away most of the day, and hardly gets off his butt to do anything except go to the washroom. He is on 4 sinemets per day and he other pd symptoms are controlled quite well. He takes B1 which has helped his constipation. He has not had Covid. I wish I could advise you on things that have worked for my father but he refuses to try anything
I can obviously sympathize. I have a feeling we don't hear much about people like our fathers online, because, given that they're unwilling to help themselves, they wouldn't be the kind to write about their condition online (not that my father knows how to use the computer anyway, but even if he did...). It's a very problematic condition - a disease (depression/apathy) that causes you to not seek treatment for it.
I have a feeling we don't hear much about people like our fathers online, because, given that they're unwilling to help themselves,
Oh dear. He is getting old, is continually tired, feels weak, probably has post viral syndrome and is not on Levadopa. I would be exactly like him in this situation.
Red light therapy has helped people with depression and particularly with apathy associated with Parkinson's. It has also helped some people sleep better.
Commercial devices are available, and you can also make your own light hat. There are instructions at redlightsonthebrain.blog
Sounds like he could use some madapor or sinamet. I’d be very depressed if I wasn’t taking any. Hopefully life will pick up for him, but I reckon even a low dose will improve his QOL straight away.
In addition he could try to improve his sleep, which makes a huge difference. I have found a combination of CBD oil and melatonin at night to be very helpful.
It currently is my number one hope, that levodopa will cheer/energize him. Because it is clearly a medication given for physical symptoms (meaning, he'd be willing to take it), and because I think it's relatively likely that his neurologist will give it to him when he has an appointment (a month from now...).
I actually brought him melatonin, but he won't take it. I'm a bit reluctant to push him to take it, though, because I'm worried that it would make him even more sleepy during the day.
I would encourage you to research the B1 protocol mentioned in various posts here. That might help. However to be really honest, my husband has PD dementia. After being put on the Duopa pump 24/7 his dementia improved amazingly but 5 months later (November 2021) he got a very mild case of (probably the Delta strain) Covid and that night his dementia went through the roof. It then got some better but this spring has steadily gotten worse. I'm guessing at almost a year later, he is probably not going to improved from the damage done by the virus.
Thanks a lot! I hope that after the neurologist changes my father's treatment (e.g. by adding levodopa, or by using a dopamine agonist) it would help. But yeah, COVID really messed things up for our loved ones, didn't it?
just wanted to add to all the other great comments and suggestions to not underestimate the impact of travelling overseas and switching time zones like your father has. It takes quite a while to recover from that never mind the stress of travelling and the impact of having a bad virus. Do give it some time along with all the other suggestions. I also suggest for recovery from Covid/post viral is maximum dose of omega-3 and quercetin as anti-inflammatory help. Very effective. Suggested by a pharmacist.
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Next NoSilverBullet Zoom session Monday 17th of July: Lucy Jung on "CUE1, a wearable device to reduce slowness and stiffness in Parkinson's"
When to increase dosage of Carbidopa/Levodopa
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