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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 1 month, 3 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

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