Parkinson’s Apathy: Community Insights and Coping Strategies

I’ll discuss my thoughts on this, but I think the best part of this page are all the comments I have de-identified from the Silver Linings Parkinson’s Facebook group in response to a post from someone suffering about apathy. If you have not found a social media group you can relate to, this is a good one.

Many of us suffer from apathy, or lack of interest and enthusiasm. In some ways I suppose it is not all bad, because if you are apathetic then you may not care so much about all the other symptoms.

On the other hand, being apathetic also leads to social isolation and not having the motivation to stay active, exercise and take care of ourselves and others.

That first year, I didn’t really care that I had gained on 30 pounds..which is completely out of character for “normal” me.

Not surprisingly the same things that helped with almost all of my other symptoms have helped and continue to help with apathy. I have my ups and downs and good days and bad days.

I have found that having a goal that will challenge me, and that may or not even be possible even on my best day helps keep me on track.

I have found that my new found obsessive behavior beats out the apathy as I go after whatever crazy goal I have come up with next.

As a side benefit, exercising and doing all the things that I need to do to accomplish that goal also gets me out of the house more. Our local PD community center, InMotion has a fun vibe and it is nice to hang out and chat with others. We all leave feeling better.

Medications are also something to consider. I take Wellbutrin and Nuvigil for anxiety and excessive daytime sleepiness. I am also much less apathetic when I’m not anxious and falling asleep all the time.

I have greatly benefited from a few Facebook groups. My two favorites are The Parkinson’s Fight Club and Parkinson’s Silver Linings. It is a place where you can read about about the challenges others are facing, cheer them on and if you have something that has helped you with something similar pass on some of your wisdom. It is also a place that if you are having challenges and haven’t yet figured out a solution, someone or a lot of people in that group are going through the same thing and may have some ideas that will work for you.

What have you found that helps with apathy?

This is a thread from Parkinson’s Silver Lining Facebook Group, I have taken out names for privacy as it is a private group.

Original Post

A little down today. Beginning to realize that this apathy thing is real. I hardly want to talk to my friends anymore. It is invasive. Have you discovered anything that has helped you?

Talking to folks like us on FB. It is easier to talk to someone who is going through the same thing.

Top contributor

That’s so true. It’s comforting to know that you are not alone and that there are others out there with the same fears, anxieties and maladies as you. Stay strong 💪 and remember that we are all in this together ❤️.

What I have found is a lot of people have distanced themselves from me as soon as they learnt about my parkinson’s .

I have become a bit withdrawn because off that

I’m sorry you’ve experienced that. I don’t understand unless their perception of PD is faulty. I prefer being alone. Welcome!

feeling the same…..it’s hard ,lots of love from belgium

So sad and sorry to hear that. Sending hugs.

Rock Steady Boxing has helped. It strengthens me and raises my dopamine! It is wonderful for socialization as well…

Definitely try and stay engaged. I force myself to get up and go to the gym. It’s not easy but I’m always glad I did. I have made friends there and their encouragement is always appreciated. 😁

I also deal with apathy. I made myself step outside and pull weeds for 10 mins. That amount of time seemed manageable. I ended up enjoying it and felt a sense of accomplishment. Hope you’re feeling better.💕

Learn to love yourself the way you are. You’re still valuable.

. For me… Attending Church, having Church friends, prayer, reading and studying the Bible, and my faith in Jesus are very effective against the Social Apathy. The apathy can be dangerous if not managed. I hope what I have said contributes to your well-being.

Lots of Motown music or any music first thing in AM..and sing and dance along

Setting goals for myself helps me…even if they are very small. Every day I check my “progress” and it keeps me motivated to “get up and get going”.

After over 5 years with PD and a fractured shoulder this year, I am learning to push through the clouds when the apathy creeps in. It’s not easy at 74 years old, but with lots of prayer, exercise, proper diet, good deeds for others and spending time with my grandkids. Believe me, it’s not easy but worth it. Good luck and God bless.❤️

Storms come and go it just a storm it will pass

Top contributor

Been feeling good physically and even did a couple hand written notes home with one of my students. But my apathy is so real that I get worn out fighting it off. Thank God for Rock Steady Boxing followed by social/support group.

No one tells you about anxiety & apathy. You don’t find out until it happens. It seems like everyone is laughing and enjoying the day. I can’t even smile anymore.

It’s good to know it not just me.

Wellbutrin for me. Don’t “go quietly into that good night!”

My posts are backwards but I think you can figure it out…sorry!!

Get outdoors and get moving. Go for a walk in nature and just let it wash over you. 💙

There is a program called PD Fight club for men and women. It is an exercise program, but another benefit is fellowship with men and women who are or have been affected by most anything you have experienced. Check to see if you have a group close by.

I go for 2 sessions of exercise for Parkinson’s per week and I find it really helps with social too.

Top contributor

Are you exercising? I’ve been doing tai chi which has helped its on a heavy exercise but great to get out and move

I don’t just find I have apathy, but some well directed outwardness. There seems to be no more tongue to bite, and guess who doesn’t care lol.

Top contributor

We are here for you!

Top contributor

It is real! I’m working on that one by finding something positive in every situation… not always easy! Hang in there 💗

I put my favourite music on or read a book

I am trying to become a blessing every day to st least one person and more if Ican. I still have shitty thinking at times but I try to catch it and do better. I did see a psychiatrist who offered me an anti anxiety antidepressant med . I try really hard not to allow myself to think in those modes and I have not taken anything. I do have Xanax from years of tremors before I was diagnosed and I take one every night atbedtme Occasiknally I take one to ho to the dentist, or if I am in a crowded lace or public speaking, driving in c the city etc I still get anxiety but I am taking classes on mindfulness and meditation . I hope this helps you somehow. I don’t read negative posts or negative stories or anything negative unless I’m feeling strong enough that I can handle it I don’t need to read about what’s happening with other people that’s not doing well. Feel free to message me or write me back if you want to talk some more. Oh yes….i treat myself often!!!!!!!!

This is my 5th year since diagnosis and I am doing quite well. I am still independent

Driving my car etc. I do take a hefty amount of prolops . I do get very tired and sleepy and lazy with no motivation to do much of anything and if I want to do nothing, I am able to do nothing. But here is what I have learned in five years if I don’t do anything I’d become more unmotivated and more tired, if I don’t make myself take part in life and things that are available to me then I become a couch potato. When that happens, my whole body is depressed, and my mind becomes depressed and that happens very easily so I have studied stress, optimism, and many other factors that are related to this problem, trying to understand it. This has helped me a lot. I realize I have to be a warrior for myself. No one else is going to do it for me. They will visit me. They will take me places. They will feel sorry for me, but that will not help me at all. Their lives willl go on and I will be stuck and go backwards. This will continue until I am bedridden and no longer a pleasure to be with or to visit. So I got a kitty from the shelter. She makes me smile and warms my cold angry heart. She needs to be fed, entertained, she doesn’t go out so is with me a lot. 

I had 4 visits with a sweet therapist who thought I had the ability to be a warrior And she helped me map a future. I woke up sad every day and cried and worried about when and how I might die and found doing this ruined my husbands day and made him sad depressed and stole any joy from him. And made him fear try he future and made him cry. So. Is I’m getting smarter and I have tried to change my self centered mind

I’m happy being on my own ,sleeping lots ,weather doesn’t help

There are times when i feel very down

I have days like you. Days where I want to cry, and withdraw into my quiet place. I find the best thing I can do is sit down and create something out of clay. Today I will make some little owls. And these guys will Make me smile. Be kind to yourself and be kind to your self

I so relate!! I used to be so social. Lots of friends. Now I prefer to be alone! So crazy. Plus I hate talking on the phone!!

I find that sometimes people simply do not know how to act , what to say and are afraid of rocking the boat..sometimes we simply need to address the elephant in the room first and have a good laugh… being yourself is the best thing

I go outside first in the morning, look at all the beautiful things I can see.trees,grass etc. Begin thinking God for .alit of times from a to zero. It gets my head straight a little. As the day goes. I am grateful I can still cook. I am 72 dx 8 yrs. It is not for sissy “s

I have a favorite T shirt that says “ if at first you don’t succeed. Just blame Parkinson disease and move on .”