This is my first time visiting the forum and my first post. It has been insightful reading the various posts in all the different forums and has made me realise “actually, you know what, things aren’t as bad as they could be”.
My hubby was diagnosed with PD a couple of years ago and it has been life changing for us both. He is struggling coming to terms with it and I’m wondering if I am too. His symptoms are probably stage 1-2 I reckon so in the great scheme of things not too bad; we have a long journey ahead of us. Roprinorol hasn’t hit the spot and has too many side effects so is transitioning over to Sinemet. I’m hoping it will make a difference but I have a feeling my expectations are too high.
It’s very apparent that hubby can’t keep up with my energy and enthusiasm ( doesn’t help that I’m a rush-aholic) but his slowness and fatigue I find frustrating. He has asked me not to express my frustration to him but chat to my friends about them. I feel very sorry that he has been cursed with this awful disease and although it’s not me having to endure every day, it is my journey too, over which I have very little control. I get frustrated as he could do a lot more in the way of self help. I am wondering if my bucket of compassion is big enough? I did say I don’t think I’ll be able to keep my mouth shut if he drinks a can of coke in the evening and then complain of insomnia and sleeps the whole day, especially if I’m picking up the slack. He does try and stay active with DIY etc.
I try and stay positive for the kids even though they are young adults as I don’t want them to see any of the burden and I don’t want to keep whining to my friends either…
I’m also struggling with, when I look at him I see and think Parkinson’s rather than seeing the person.
Bottom line is, are these feelings natural as I am currently feeling very selfish. Please don’t judge me I’m feeling bad enough as it is. Hoping it’ll all settle down….
Would like to benefit from other people’s hindsight and any tips gratefully received. Please.