Living With Parkinson’s – Stuff I Find Hard

Stuff I’ve found hard and things that help.

Just like everyone, I go up and down in life and wellness. Good times come and go. Sometimes I’m doing well, sometimes I’m going through a rough time. I feel like I’m doing well at the moment, yet not that long ago I was feeling like I was approaching rock bottom at a fast pace (or maybe smashing through it to delve new lows).
Everyone has suffering in this world, and I hope everyone can experience at least a bit of joy. Maybe my highs and lows fluctuate more wildly than what is “normal”, or the peaks and troughs are higher and deeper. I really don’t know, and can’t assume what others are dealing with. I do know that when you live with something like Parkinson’s, maintaining a reasonable level of functioning can be a difficult balancing act.
Here’s a list of some things that I find challenging and stuff that has helped me deal with it:
1. Challenge number one for me is to stop losing weight. Yes, I got the message about exercise, and maybe I overtrained a bit (I honestly don’t have a sense of this). I also maybe wasn’t eating enough – but again I don’t know. Has anyone ever tried keeping a food diary for longer than a couple of days? It is very hard. Food messes with the absorption of the levodopa so balancing eating right with taking the right meds at the right time has been nigh on impossible (and exercise the right amount, and work, and raise children, and blah blah blah). What has helped has been prioritising eating well, exercising less (a small amount daily or every two days). At least I’ve managed to stop losing and I’ve even gained a small amount of weight.
2. My second challenge is handling stressful situations without complete meltdowns. I have
three children so there is a lot of crying in my household (mostly mine). What has helped has been breathing exercises to relax and not have a panic attack when things are hard. I also have invested in some home help and dialled back my work hours a bit, and I have also dialled back the self-flagellation about all the ways I’m “failing”. A bit of acceptance of my situation has helped me here. Acceptance that being present in the present with my kids is
enough.

3. Lastly (it’s a short list – I’m tired!) I have struggled with fitting in exercise around work commitments and family commitments. I love to exercise (see the above re: over training!). It makes me feel so amazing. I love the feeling of my body working, and it helps big time with pain and stiffness. It also relaxes me, chuffing out my stress. But I can easily put other stuff first and then a whole day goes by without my fix. I got some good advice to block out time
to exercise in my diary – prioritise the time and don’t let anyone or anything take it! And if all else fails and I only have 15 minutes then I prioritise dynamic stretching / yoga. Nothing feels as good as that does!

So there you have it! Life goals achieved. Time for bed.