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    • #25116
      Omer Shomrat
      Participant

      Hey people,
      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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    • #25148
      Malcolm Swift
      Participant

      I have had a very similar experience without the depression. Pacemaker followed by Covid followed by fatigue and worsening of symptoms. Sleep problems ensued. Symptoms in abeyance returned. Main difference is that I am on Rasagiline, Ropinirole and co-Careldopa and I am being advised to add Amantadine to recover lost ground. I am undecided on that as I think exercise will help more. I take strenuous exercise, a variety of vitamins and probiotics and so forth. I don’t think I would have been as fit as I was before Covid without the medication. I believe (and am strongly advised) the Rasagiline should not be stopped. I dont see how anyone with your fathers symptoms can have a liveable life without L-dopa. But its an individual choice. Sleep is difficult but I avoid stimulants after noon. I tire myself out and use a hybrid memory foam type mattress because  of the susceptibility to back issues appearing again and its good for sleep. Can’t help with depression. Try other routes first. Treating depression is a road lined with pitfalls.

    • #25165
      Laurie
      Participant

      Hi Omer,
      Any stress of any kind will make my PD symptoms worse so I can relate to what you are saying. Surely Covid is a stress on the system. As for his mood, getting on a L-Dopa drug could help him with more energy and that would help with less napping eventually and a better mood, but he probably needs to nap and heal now. I was on Azilect at first and it didn’t help much (it circulates the dopamine one has in the brain, but if you don’t have much of it to start then it doesn’t do much) so when I started L-dopa (in the form of Rytary) along with the Azilect, I felt more energy, less fatigue. But I’m 72 and still have to keep it simple. FYI, I was afraid to take L-dopa because the research says that when you keep getting used to it, eventually it won’t work any more and you have to keep increasing it. But my neurologist said that is old recycled research from the 80’s and 90’s that it will only work for 3 – 7 years and wishes we would all stop researching on the internet which doesn’t have the most accurate, up to date information. He says it depends on how it’s delivered now and people will respond better for a longer period of time.

    • #25170
      Grammie
      Participant

      Hello Omer,

      My husband is 63 with Parkinson’s for 9 years now. His neurologist did give him a small amount of lexia pro for apathy / depression.  It definitely helps. He too is tired but he’s also battling some other serious health issues that can lead to tiredness too. He was a very active man ; surfer/ tennis player so yes he was depressed once his tremors/ slow moving body made these two sports unplayable anymore. Yes, have your father do some sort of physical exercise daily. It truly helps the Parkinson’s systems. Also our neurologist said to try melatonin at night for sleep help. It too seems to be helping. He suffers from vivid dreams at night. Natural and please don’t be afraid of carbidopa/levadopa.  My husband has developed some dyskinesia but the amantadine seems to be helping. Best wishes to you and your dad.

    • #25184
      Kathleen Ernst
      Participant

      I didn’t get diagnosed with Parkinson’s until a few months after I had COVID and the fatigue from exertion is still an issue for me 18 months later. I also had worsening of depression and have had issues with anxiety.

      All my doctors say it’s very complex because stress aggravates Parkinson’s symptoms and COVID syndrome can cause some of the same non motor issues as Parkinson’s.  A family member also has COVID syndrome and still struggles with sleeping a lot through her day. Sounds to me that your husband is struggling similarly. If your husband doesn’t show improvement you might consider asking to see an infectious disease doctor. They have more insight to COVID and will run blood tests to see if there are issues of inflammation that can be playing a roll.

      I still struggle but I have found some support that is helping:

      anidepressant for depression and helps with some energy

      psychologist to help with depression and anxiety. I see one on line specializes with neurological disorders

      Exercise—learn to pace. It may be in 5 or 10 minute intervals. That’s ok

      last one is for you, if you have a friend or family member that can help give you a break so you can do something fun for a short while or some time to decompress.

    • #25195
      Marie
      Participant

      Hello Omer!

      Welcome! How awful to get covid after traveling, and I hope you had a nice visit to the states. My husband has been diagnosed with Parkinson’s for 10 years I believe, is on carbadopa L-dopa, 2 kinds, one is fast acting, one is time released I believe. He is also on a neurpo patch, which he believes does nothing and something else that escapes me as I am brain dead these days. We rescued a pup, ( advertised as 2 1/2 but was more like one and a couple of months. He is like the late in life child you didn’t plan for, but we love him) and when I had a tooth pulled a month  ago he and my son decided to stay all night with him. Now he will not sleep by himself, and my husband will not listen to him cry for one night in his crate, so we take shifts.. plus I suffer from migraines..

      My husband does not move nearly enough, but today he was out with the dog for 45 minutes with the dog, who loves to run the yard. And said he did his version of running with the pooch. His trouble, pain times, I’m dying times are 7-11 pm. he knows he needs to move more.

      He has both apathy and depression. He takes lexapro for night terrors. I also know it is for depression. But it definitely helps with night terrors, and his sleep has been terrible since I have known him for 22 years. I add a Benadryl to his night time meds, he tried melatonin once and it gave him terrible nightmares.

      i would speak to he doctor about meds, I can make life a lot better for your dad, and you as caregiver ♥️

       

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