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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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