October 8, 2022 at 6:14 am #25128Omer ShomratParticipant
I’ve posted it to some of the other forums here, and I’m posting it here too, because I think it fits.
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):
- 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.
- 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?
- 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.
October 9, 2022 at 7:39 pm #25135Sherman PaskettParticipant
Omar, sorry that your father is suffering. Sadly, it has been my experience that PD symptoms worsen dramatically whenever the body undergoes any serious trauma, whether it be an injury, a serious illness, or even an emotional event. A Covid infection would certainly qualify as traumatic. High neurologist should be consulted to reevaluate his meds.
I started on rasagiline and it was a horrible experience. He is old enough he could take carbidopa/levodopa and not have to worry about long term side effects, and not have to deal with the problems rasagiline causes, such as sleep disruption and obsessing.
October 12, 2022 at 1:00 pm #25145Marlene DonnellyParticipant
Your dad’s experience mirror’s mine oh so much! I am also 76, was diagnosed 11 years ago, and have done pretty well with PD, my symptoms not great but neither really disabling. My husband and I got home from a trip to VA (we live in NJ) to visit our daughter and family. Within 24 hours my husband came down with COVID. It took me three more days to join him. Our 10 day symptoms were also flu-like and were gone about two weeks ago. To my dismay, last week I started to see that each day I was becoming more and more fatigued. We had some pleasant activities to which we were committed last weekend, and I made it through them, but the effort to do that was way out of proportion to what it should have been! I have always slept well and continue to do so, but that has made no impact on the level of exhaustion I feel. I can also add a couple of hopefully helpful comments besides being able to commiserate.
1. This is my second experience with COVID, and the same thing happened to me last time with regard to exhaustion a couple of weeks afterward. I think that lasted for about a month and then things started to improve. So there is hope for improvement for both your father and me! Also, Sherman (the last participant) is absolutely correct about any trauma being reflected in a temporary worsening of PD symptoms. After 11 years and a number of other health situations, I can vouch for that!
2. I have only ever taken carbidopa/levodopa for my PD, and am usually very happy with how it works, but right now it is not providing me with as much relief as usual. I think this also is usually the case when there is any trauma to the body. I would recommend it for your dad, but not as an immediate fix.
3. I have been on a very low dose of an antidepressant for about 10 years, and I think that has been very helpful. Last year I became exhausted for no apparent reason. My neurologist said that she was increasing the dose of my antidepressant, not because I was depressed, but as a way to give relief for the exhaustion. Within four days it was like someone had turned the light switch from off to on! For me the antidepressant that accomplished this was Venlafaxine, generic for Effexor, but everyone reacts differently to antidepressants. When I told my neurologist about this unexpected success (at least from my perspective), she grinned and said, “Apparently that’s what your brain and body needed.” Perhaps if this approach was taken by your dad’s neurologist, rather than focusing on depression, your dad may be willing to try an antidepressant.
4. With regard to a non-PD med to help your dad, I have to ask if he is taking any kind of exercise class? If not, he really should look into this. I know that depression and apathy make this harder, but it is so important, especially when dealing with these symptoms. I have been so fortunate that my local hospital has wellness classes for seniors. Before COVID they were in-person, and now they are on ZOOM. I took T’ai Chi first because it helped me with my balance. Over time I added a Chair and Standing Yoga class and an Arthritis Exercise class. I don’t have arthritis, but the class works for me anyway. The activities can be adapted to meet my needs, they are fun, and they really do help. Since I started each of these while they were in-person, I got the social benefit of meeting new people, which was great. Lucky for me, we have been on break last week and this week, but next week, no matter how I feel, I will be doing a class on Monday, Wednesday, and Friday. By now I don’t think about whether I can do it; if there is a class, I just do it because everyone expects to see my face, even if it is only on the ZOOM grid.
Best wishes for your dad’s increase in energy and positive attitude! Also, thank you for sending this just when you did. I guess misery loves company, but reading your letter and answering it reminded me that better days are ahead, I don’t have to feel guilty for my lack of accomplishing much during these tough days, and none of us is really alone with our symptoms.
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