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I Find apathy to be one of my most difficult symptoms.I have a general feeling of not caring about things whether it’s my favorite sports team or holidays coming up. It seems like some folks don’t experience that I have overcome it or dealt with it in some way. I even heard someone in another discussion mention positive elements or appreciating having Parkinson’s. Is it just me? I don’t think so as apathy seems to be a common element for PD. I don’t like it.
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I had some apathy. Starting levodopa/carbidopa therapy (in my case, using Rytary) has helped a lot. As far as I know, dopamine is involved in establishing the feeling of anticipating a future reward, and a lack of dopamine means that this linkage is either reduced of missing. My understanding is that this exhibits itself as apathy, broadly defined as “being less interested in things one used to enjoy doing”. In my case, putting extra dopamine into my brain has helped with apathy. But of course, there is such a thing as “too much of a good thing”, so it’s all about experimenting with meds and lifestyle.
Bottom line: We must each be our own doctors, because PD symptoms don’t start and stop with shaking or stiffness or constipation. There are these other, subtle things such as “energy level”, “mood”, and so on. And the words we use to convey feelings or changes to our doctors are very clumsy.
I suggest that if you aren’t already doing so, you tell your doctor that you intend to experiment with dosages and drugs, to find out whether your situation can be improved. Tell her that you’d like her help through this experiment, but you are not asking her permission. Then ask if she is willing to help you.
Just a thought.
— Dan
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I find that planning for the changes in my life has caused me to not care about things that used to be important to me. We are looking into moving from our 2,000+ square feet home of more than 19 years to an assisted living facility, not a nursing home with a 2 bedroom 2 bath apartment of 800 square feet is the right thing for us. However, I can’t get myself in gear. I bought a tee shirt that says “Blame It On The Parkinson’s”. That’s how I feel now.
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Hi Christine.
Scroll down in this article and there are some links to reference light therapy… https://parkinsonsnewstoday.com/2019/06/11/sinemet-has-left-the-building/
i have been been doing it since May. I think it helps my sleep but I am not 100% sure. I sleep well except for 3am bathroom visit. It is so hard to tell what works ….
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Ohhh, red light therapy! I was thinking you meant a ‘happy’ light, like you can buy at Costco!
I have tried red light therapy and quite like it. Unfortunately the location of the place that offers it is very inconvenient. I’m not sure if it made any difference as I really only stuck with it for a month or so, but it was a good excuse for a 20 minute nap! Now I feel like I should try again. Do you have a device you are using at home?
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I definitely experience apathy. I initially confused this with depression when I first noticed that I was not experiencing happiness from things that used to make me happy. After some introspection, I realized that I wasn’t experiencing any lows either. I didn’t know apathy could be a thing for humans. I find meditation helps when it’s done with a focus on gratefulness and seeking happiness. As Heather Kennedy reemphasizes, “Hunt the joy!”.
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Luckily I don’t feel I have a problem with apathy. That said, I have been taking venlafaxine every day since I had to stop working. I don’t know if that is what has helped me with apathy, but it has definitely helped with depression. I also meditate every day, and although some days it is very hard to make myself do my exercises and yoga, but I remind myself that I have every reason to push myself – so I can visit and enjoy my grandchildren for a long time to come, and to be able to do activities and travels with my husband.
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A PD patient in a MJFox Webinar about fatigue notes the close connection between fatigue and apathy. For me it seems to be fatigue more than apathy most of the time. And fatigue is aggravated by insomnia. I am currently trying gabapentin to help with sleep. Of course sleep without drugs is better but if there is no or minimal drug overhang the next day then sleep with drugs is better than no sleep.
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A respondent asked if the gabapentin was effective in aiding sleep. This is a work in progress. I started with 300 mg and for the first week or so it did seem to help with getting back to sleep after waking up during the night (nocturia). I tried stopping the gabapentin when it no longer seemed to be helping and the insomnia got worse. So I started it again and this time when it no longer seemed effective I tried adding going to 400 mg of gabapentin. I had been told by a neurologist that it was often necessary to increase the dose and that I could go to 600 mg/day. (I don’t know if it matters for dosing but I am 73 years old and weigh 150 lb.) I have been taking 400 mg for a few days and it does seem to be helping. I do not yet know if I will need to increase the dose to 500 or 600 mg or if it will help with insomnia long-term.
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Howdy Folks
Garrett, good topic.
I have spent the last 18 months trying to find the right dosage of the C/L to try to allow me to function well. But all that time there was and is a subtle subsurface current of this apathy thing going on too. We are, after all, in a situation where the only apparent help we are offered is some magic pills. And if that does not work, take some more pills and some more pills etc. At my last Dr. appointment, where we again upped the C/L dosage, (I am up to 1800 mg of C/L per day now, and am, after two weeks, thinking I need just a bit more to get full day coverage!!), my Dr. told me he may have something, yet another different pill of course, that can help me regain some of my sharpness. I think in his kind way he is observing and addressing this apathy thing.
Robert.
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Dan, thank you for sharing. I agree that depressed dopamine must decrease motivation. How do you reverse that? By finding things that cause you pleasure (releasing dopamine) In my case, it seems to have worked! I lost the ability to play music (I was a pianist and composer) but food and wine still do the job. And sex…! Nothing like the speedball of oxytocin and dopamine from sexual activity with another human being. And this has been such a turnaround, I even joined a gym (more dopamine)…
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This is a great topic. I’m going on one year with my diagnosis. I’m only 43 and for years I have been slowing down. I’ve been on venlafaxine since 2013 but I’ve noticed my apathy and fatigue has really gotten worse over the past few years. I used to follow most sports on a daily almost hourly basis. Now I only follow a couple and that’s if I push myself to be interested. I’ve never had to force myself to be interested in things like I do now. It’s frustrating! The only thing that I look forward to now is if I think that I’m going to be able to have a good nap because I’m always tired. Thank you all for your input. People just don’t understand what we go through and it’s depressing to think that people think I’m lazy. I need to get one of those shirts as well.
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So interesting to read other’s experience with apathy. Tiredness and apathy are my most debilitating symptoms. I have to pace myself and build in rest days to my calendar. If I’m out and about for 2-3 days in a row, I’ll need a day or two resting at home after. Some days I accomplish absolutely nothing. Other Parkies I know (which is only a few) do not experience this so I’ve never been able to confirm if it was caused by the Parkinson’s or not but felt sure within myself that it was but then I tend to blame everything on my Parkinson’s (very convenient! ). Particularly in the mornings I find it very difficult to get the brain and body into action and really have to push myself. Once I get going I improve although some days my brain just refuses to crank up and function. I figure my brain is more starved of dopamine on these days. It can be very debilitating and frustrating as there are things I want and need to get done. I do try to go walking each day and go to an exercise class weekly but have been restricted by knee problems. Now that I’ve had a knee replacement, I’m able to increase my activities and I do continue to do so. I’m more motivated to do so without the knee pain. I’m sure the additional exercise helps me a lot both mentally and physically. Social activities such as meeting up with friends for lunch etc, I also find very beneficial to my mental attitude. I’m very interested in other Parkies views about this.
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You hit the nail on the head for my experience. I find that I’m always in the “Parkinsons Zone” even when my symptoms aren’t strong. I go into my office at the university and I feel no excitement, just a strange feeling of once having been committed to it. But I plow on despite that feeling of dislocation. It’s clearly dopamine missing. I can tell myself on the thinking level that I care and act well in my job (teaching) but I don’t feel it.
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To respond to the question about apathy. I feel the app at eight but I don’t know if my colleagues or students do. But I do know that I’m not present very often but I don’t have to be in my office or in around the halls. I have to monitor my time and pace myself. I suspect they definitely know there is a with drawl on my part compare to how i used to work.
I’m glad CBT is working for some of you for a variety of reasons. I may have mentioned that my counselor practices acceptance and commitment therapy, which is mindfulness-based. So instead of countering negative thoughts you just stay in the present and dismiss the thoughts as just your mind speaking about the past or future while your body is in the present.It also requires a lot of discipline and is not perfect.When I remember to be mindful and present it gets me out of those illuminations that are easy when you have Parkinson’s.
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Having been diagnosed over nine years ago, I find that apathy is not connected with depression (on Venlafaxine and doing well), poor sleep (I’m very lucky to sleep very well!), or fatigue (often tired even though I sleep well). It comes and goes for me, though usually it is hard to get up any morning. I find that the best medicine for me is to get out of the house. I try to schedule my days so that I have yoga, t’ai chi, and exercise classes to go to on different days. Once I get out and have a good time (I always have a good time, even though I didn’t want to go in the first place) then energy and joy tend to be restored and that pushes the apathy away. Sometimes the holidays are hard for me because of apathy, so I have learned to compromise – I don’t do as much as I used to, but I do the things that I enjoy the most. Sometimes, though not often, apathy wins – usually if I have something else (a cold maybe) bothering me. In that case I give in to it and declare to my family that I am “on vacation.” then I read, watch TV, or nap all day. Because this is a “vacation,” I work at keeping my spirits up, and as soon as my body starts to feel better, I can get back in gear. I am very fortunate in having a husband who seems to understand all of this and is there for whatever I might need. In return I try to keep from being grumpy, since that is about the only thing that bothers him.
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Marlene,
I think you struck the nail on the head (for me anyways). You always have a good time when you go out even though you don’t want to go out! That’s a struggle that I’ve often dealt with as well. And I think my Dad (diagnosed in 2013) experiences much of the same. And filling our lives with things we love (like yoga and tai chi) only seems like another positive layer. I’m really glad that you’ve been able to find these answers for yourself. And I think it’s okay for there to be waves of apathy. Parkinsons is hard. That’s a huge reality.
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Marlene,
I think you struck the nail on the head (for me anyways). You always have a good time when you go out even though you don’t want to go out! That’s a struggle that I’ve often dealt with as well. And I think my Dad (diagnosed in 2013) experiences much of the same. And filling our lives with things we love (like yoga and tai chi) only seems like another positive layer. I’m really glad that you’ve been able to find these answers for yourself. And I think it’s okay for there to be waves of apathy. Parkinsons is hard. That’s a huge reality.
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