I have Parkinson’s too, and I know exactly what you mean. It’s strange how the disease can be both relentlessly present and briefly absent from your mind—until it barges back in, usually with impeccable timing. The work I do here on Substack has become a lifeline for me, along with my dog of course. They both keep my brain busy and allow me to forget for a little bit.
I forget to take my meds on time with great frequency. That's because when I am sedentary, and focusing with energy on writing, analyzing, engaging with people on the computer, reading, etc., I don't really move. I have fallen off the exercise train. I get sleepy and fog-headed from the meds as well (about an hour later). But when I am active, or absolutely MUST have the energy, I muster what is needed. Just like Karla, I will then crash from all of the extra exertion. I struggle to find the right "balance" of exertion. I know what I need - a routine and more exercise. Am I doing what I know I need to do? No. That symptom is called "apathy." It is a relief to be able to blame it on the PD. Otherwise, I would consider myself undisciplined, lazy, and unproductive. I've always risen above the symptoms with excellent medical management, and most importantly, the simple NEED to get stuff done. As my husband's cardiac health is undergoing intense scrutiny at the moment, that need is even greater.
It’s so refreshing to hear others Express the same frustrations with fatigue. I’m afraid those around me still think I’m somewhat lazy. I must admit that Pre PD I would probably think the same. When I get up in the morning, the first thing I do is set alarms on my phone for all the times I’m supposed to take my medication. I set it so it snoozes if I don’t take the meds right then. This is helped me be more on time and able to adjust my medication’s to my activity. Now, if I can figure out a self starter for exercise….
It's hard to be tired all the time. I don't sleep much anymore, maybe a couple hours, wake up, be awake for a while, "sleep" for another couple hours, rinse, repeat. I'm still working, but not for much longer. I'm 60, diagnosaversary was two years ago. There's still a lot I'd like to do...
The crushing fatigue is one of my most bothersome symptoms. One thing that I learned from a Dr. Okun webinar is that PWP need to have their vitamin B12 level checked. Something about our meds can cause poor absorption of B12 from food. I had my primary care dr check and indeed I was deficient. I've taken a series of shots and oral meds and now my levels are excellent. And believe it or not, I'm not nearly as tired. Maybe something to check out?
I have been taking B12 for a long time. I actually cut back recently because my B12 levels were above normal. I think I might go back to taking it every day again and see if that helps.
I can relate to all of the comments. Sometimes I get so excited that I feel good. Then I forget the dreadful fatigue that usually follows after 4:30pm. Friends never understand that going out to dinner doesn’t work for me.
I don’t handle it very well. If I have a day where I’m feeling really good and try to do more because of it I I invariably end up crashing the next day. I wish I could quit doing that. It’s hard to explain to people why I felt so good yesterday and looked so good and today is a down day and I am not functioning. No one understands that. The worst is if I try to stay up later than 930. If I do, I know the next two days will be nothing days. Nothing will be done. Nothing will be accomplished.. I spent most of my life being very hyperactive and feeling very accomplished in so many things. Now if I get one major thing done per day, I feel like I’ve done a mountain of work.
I have Parkinson’s too, and I know exactly what you mean. It’s strange how the disease can be both relentlessly present and briefly absent from your mind—until it barges back in, usually with impeccable timing. The work I do here on Substack has become a lifeline for me, along with my dog of course. They both keep my brain busy and allow me to forget for a little bit.
I forget to take my meds on time with great frequency. That's because when I am sedentary, and focusing with energy on writing, analyzing, engaging with people on the computer, reading, etc., I don't really move. I have fallen off the exercise train. I get sleepy and fog-headed from the meds as well (about an hour later). But when I am active, or absolutely MUST have the energy, I muster what is needed. Just like Karla, I will then crash from all of the extra exertion. I struggle to find the right "balance" of exertion. I know what I need - a routine and more exercise. Am I doing what I know I need to do? No. That symptom is called "apathy." It is a relief to be able to blame it on the PD. Otherwise, I would consider myself undisciplined, lazy, and unproductive. I've always risen above the symptoms with excellent medical management, and most importantly, the simple NEED to get stuff done. As my husband's cardiac health is undergoing intense scrutiny at the moment, that need is even greater.
It’s so refreshing to hear others Express the same frustrations with fatigue. I’m afraid those around me still think I’m somewhat lazy. I must admit that Pre PD I would probably think the same. When I get up in the morning, the first thing I do is set alarms on my phone for all the times I’m supposed to take my medication. I set it so it snoozes if I don’t take the meds right then. This is helped me be more on time and able to adjust my medication’s to my activity. Now, if I can figure out a self starter for exercise….
It's hard to be tired all the time. I don't sleep much anymore, maybe a couple hours, wake up, be awake for a while, "sleep" for another couple hours, rinse, repeat. I'm still working, but not for much longer. I'm 60, diagnosaversary was two years ago. There's still a lot I'd like to do...
The crushing fatigue is one of my most bothersome symptoms. One thing that I learned from a Dr. Okun webinar is that PWP need to have their vitamin B12 level checked. Something about our meds can cause poor absorption of B12 from food. I had my primary care dr check and indeed I was deficient. I've taken a series of shots and oral meds and now my levels are excellent. And believe it or not, I'm not nearly as tired. Maybe something to check out?
I have been taking B12 for a long time. I actually cut back recently because my B12 levels were above normal. I think I might go back to taking it every day again and see if that helps.
I get vitamin B-12 injections every 90 days from my Primary Doctor. B-12 has been helpful for me.
I can relate to all of the comments. Sometimes I get so excited that I feel good. Then I forget the dreadful fatigue that usually follows after 4:30pm. Friends never understand that going out to dinner doesn’t work for me.
Feel better, Sharon. You are an inspiration! 🙋
I don’t handle it very well. If I have a day where I’m feeling really good and try to do more because of it I I invariably end up crashing the next day. I wish I could quit doing that. It’s hard to explain to people why I felt so good yesterday and looked so good and today is a down day and I am not functioning. No one understands that. The worst is if I try to stay up later than 930. If I do, I know the next two days will be nothing days. Nothing will be done. Nothing will be accomplished.. I spent most of my life being very hyperactive and feeling very accomplished in so many things. Now if I get one major thing done per day, I feel like I’ve done a mountain of work.
Karla, I understand that completely, but I also struggle to explain it to loved ones without PD.