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    • #16818
      Garrett McAuliffe
      Participant

       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.

    • #16823
      Jean Mellano
      Participant

      hi garrett, i am with you, apathy really sux. i feel my life is so bland and nothing seems to make me excited anymore.  we are all very different in our symptoms. I dont have tremors, but do have a range of other symptoms, including apathy…  I will never be able to appreciate PD.

    • #16828
      Dan Freedman
      Participant

      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

      • This reply was modified 8 months, 2 weeks ago by Dan Freedman.
      • #16834
        Michael Jaffe
        Participant

        I take Rytary and it does not help the apathy. Mostly will power but that is not a great solution. Have not found any answer yet. My sympathies. MJ

    • #16836
      Carol Rothfeld
      Participant

      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.

    • #16843
      Jean Mellano
      Participant

      dan, as you say.. ” it is all about experimenting with meds and lifestyle.”  and what works for one does not necessarily work for another.  michael, when you find the magic elixir, let us know 🙂  carol, love the shirt,  i blame everything on PD LOL

    • #16853
      Christine
      Participant

      I need that shirt too! I still care about the most important things – family and friends- but jeez, housework? Nope! What to make for supper? Nope! What I’m wearing? Nope! The list goes on, as you can imagine.

      These shorter sunlight days don’t help either.

       

    • #16859
      Jean Mellano
      Participant

      hi christine, have u tried light therapy since the days r shorter?

    • #16863
      Christine
      Participant

      No I haven’t. Do you have any experience with light therapy?

    • #16865
      Jean Mellano
      Participant

      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 ….

    • #16866
      Christine
      Participant

      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?

    • #16867
      Jean Mellano
      Participant

      Christine,

      yes, I purchased the coronet from the woman who owns that website in the article.  U can also DIY as she provides instructions.   I look like ET when I use it lol

    • #16868
      Jean Mellano
      Participant

      Christine,

      yes, I purchased the coronet from the woman who owns that website in the article.  U can also DIY as she provides instructions.   I look like ET when I use it lol

    • #17034
      Mike P
      Participant

      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!”.

       

       

    • #17042
      Jean Mellano
      Participant

      depression, apathy, lack of motivation, all new to me since PD. meditation does help.

    • #17115
      Ruth MacKenzie
      Participant

      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.

    • #17131
      James Harvey
      Participant

      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.

    • #17144
      James Harvey
      Participant

      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.

    • #17147
      Robert
      Participant

      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.

    • #17148
      Jean Mellano
      Participant

      robert, i am losing track of how long i have been trying to find the right ‘cocktail’ of drugs, i think it is almost 2 years.  i too am sick of hearing , try this drug or up the dose… jeez, if i  felt better it might be worth it, but i always feel like crap, unmotivated and apathetic too

    • #18037
      David
      Participant

      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)…

    • #18038
      David
      Participant

      Robert, I hear you… this has been my situation too. yes, it’s important to get the drugs right, and dosing etc. But see my reply to Dan. Since I started on the drug called pleasure, I’ve been a new man (as long as the Levidopa keeps the other stuff at bay…)

    • #18052
      Mary Beth Skylis
      Moderator

      David, I’m glad to hear that you’ve found ways to fight the depression. What kind of gym activities do you partake in?

    • #18063
      Chris
      Participant

      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.

    • #18141
      Allie J
      Participant

      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.

    • #18142
      Garrett McAuliffe
      Participant

      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.

    • #18148
      Ally
      Keymaster

      Garrett, do you worry that the apathy has a negative impact on your ability to do your job or work with your students? Has anyone at your work place noticed the change?

    • #18162
      James Harvey
      Participant

      My apathy was made worse by insomnia.  Recently I started a CBT-I program (Cognitive Behavioral Therapy -Insomnia) for insomnia that seems to be working.  It has given me a sense of control over the insomnia and about 4 extra hours of free time each day.

    • #18172
      Mary Beth Skylis
      Moderator

      James, I’m glad to hear you’re exploring CBT. I’ve been seeing a CBT therapist for about two years, myself. And it often feels like a long process. But it works. How do you feel about it so far?

    • #18176
      Garrett McAuliffe
      Participant

      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.

    • #18202
      Marlene Donnelly
      Participant

      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.

    • #18210
      Mary Beth Skylis
      Moderator

      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.

    • #18211
      Mary Beth Skylis
      Moderator

      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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