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Is this something other people experience?

A MyParkinsonsTeam Member asked a question đź’­

If I just get out for something like a hair appt & then Bible study in the same day, I find myself in bed the next day. I am grateful for the day ai got out but sad the day I am in bed.

September 10
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Answer Summary

Members widely recognized the experience of being wiped out after a single outing, with many sharing that even one appointment or social... Read more

Members widely recognized the experience of being wiped out after a single outing, with many sharing that even one appointment or social activity can leave them bedridden the next day due to Parkinson's-related fatigue. Several members offered practical strategies like scheduling only one activity per week, resting before and after outings, staying hydrated, and keeping a diary of activities and energy levels to share with their doctor. A recurring theme was finding peace through faith, humor, and community, with many members reminding each other to cherish the good days and rest without guilt on the hard ones.

A MyParkinsonsTeam Member

Cindy A4 ,
I think you and most of us experience that feeling know we all have that happened to us . I'm getting ready for the move to Michigan and I had to clean out a large shed during 100 degree weather this week . I did it on Wednesday and I'm still in pain from cleaning it out and today is Friday , but I always look at it this way , our Savior Jesus Christ suffered more pain than anybody else could experience just to save us from our sins . And I still have to clean out the other house and get the rest of this house packed up and ready for the move . Not too mention it I will be driving the U-haul to Michigan by myself with a dog and cat in the cab with me , and towing the Charger on a trailer behind the U-haul for 8 hours or more because you can't drive more than 55 miles and hour , but I know God will be with me every step of the way , it might take 2 days to get there but we will get there when we get there . My point is do whatever you need or want to do and just know that everything we do has a price for what we need to get done . So relish the good days and rest when you need to , because we have to fight this disease one day at a time , keep praying 🙏 and fighting .... 🤍

6 days ago
A MyParkinsonsTeam Member

My saying is "WOW, I had great day, I'm gonna pay for this" and I do but at least there are still some good days!!!

September 10
MyParkinsonsTeam

What you're describing is absolutely something others with Parkinson's experience. That mix of gratitude for a good day out, followed by needing to recover in bed, is very relatable to many in the community.

The pattern you're noticing — doing something enjoyable and then "paying for it" the next day — is often called Show Full Answer

What you're describing is absolutely something others with Parkinson's experience. That mix of gratitude for a good day out, followed by needing to recover in bed, is very relatable to many in the community.

The pattern you're noticing — doing something enjoyable and then "paying for it" the next day — is often called post-exertion fatigue. Even activities that seem light, like a hair appointment or Bible study, can take a surprising amount of energy when living with Parkinson's.

Many MyParkinsonsTeam members share similar feelings, including:

- Feeling wiped out after what seems like a small outing
- Experiencing low energy and difficulty moving the following day
- Feeling emotionally conflicted — happy for the good moments but frustrated by the recovery time needed

A few things that may help manage this:

- Pacing yourself — spacing activities across different days when possible
- Resting before an outing, not just after
- Talking to your neurologist about fatigue management strategies
- Celebrating the good days without guilt about the recovery days — both are part of your journey

The sadness you feel on those recovery days is completely valid. But those good days — hair done, Bible study attended — they matter and they count. 💛

September 10
A MyParkinsonsTeam Member

I just got home from hospital, so Iwasn’t doing well after appts. Stil unable to walk cuz BP is dropping. But ai go to Dr tomorrow & hopeful

3 days ago
A MyParkinsonsTeam Member

My husband experienced this after he comes home from his appointments and church .He is so tired and exhausted.

4 days ago

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