Hi Maria-
I’m not sure I can express it as well as you have, but yes. My mindset, my head space, all of it has taken a toll since PD became part of life for us. My dad has had it longer than my hubs and the scary part is seeing my dad’s progression and fearing that progression will be my hubs path too.

I’m inspired by the people I’ve met here. It makes the “battle” of a caregiver seem less scary. I’ve learned a lot here, especially that each person’s PD battle is different. My hubs is amazing at accepting all this w grace. Rarely complains and puts on a brave face every day. I carry the worry for us both. I guess. But finding better/healthier ways to cope is a constant goal.

Thank you for posting about this sensitive subject. You said it so well- it’s invisible unlike a cough or bruise visible to others. It’s also lonely until someone like you and the others here share your experiences.

So I thank each one of you who have boldly “told it like it is” good, bad and ugly. You’ve given me more strength to be more mentally strong for myself and my family.
Sending hugs to each of you out there bc love, support and honestly about this journey is essential to battling it each day. ❤️
Shannan

Frances, you just described my life. I love to help others and actually gain real personal joy from it but I am terrible about asking, accepting or being grateful for help. This has always been me but the irony of that personal character 'flaw' and having PD is almost too much to live with some days. I am beginning to turn the corner on this, much to the pleasure of my family and friends. This is one way I can honestly say PD is making me a better person. I'm ready to be grateful for PD but I no longer think it is the worst thing that could happen to someone as strong, independent and resourceful as I used to be. Maybe this is Maria2.0. I wonder if there will be a 3.0. I'll be ok with that if it keeps my loved ones from putting me out of the igloo even though I may deserve it at times.
Thank you for sharing your thoughts Frances. It gave me a look into myself and the reality of those around me.
Maria

I still have to learn to ask for help and to accept that the job I ask to be done might not be done the way I would like it - or even if it is done at all. My family and carers are learning that I will do those things when they are not around so now more of the jobs I ask for help with get done much more quickly. I don't feel good about my underhand methods but they are working at the moment ! I am starting to not feel safe climbing up ladders so I am expecting a mutiny when i ask for winter duvets to be put up in the top closets for the summer! Yes - I know I shouldn't be climbing ladders but needs must at times . Or am I just the stubbornest person ! I know i have to work on that one! I always was patient with children but find it very hard to be patient with myself.
We all have life lessons to learn and i guess we who have PD have more than most, Tolerance of yourself and your ailing body is NO1. I suspect . What other lessons are you learning you have to deal with before your family throws you out on the street!?

I love that analogy’s Maria… tossing PD into the ocean!!! Yes, that’s exactly what I hope we can all do sooner than later. But while we wait, I am glad we are together holding each other up. You say it so eloquently. Thank you so much for your concern and caring heart. You are amazing. ♥️

Thank you for sharing Shannan. We are a community of folks with PD, caring for someone with PD, and those who love the PD'ers and caregivers because we share some degree of sadness, remorse,and anger because life as we knew it left when PD moved in.
This community bonds over the fear of today- falling, chocking, poor memory, slower response time, eating healthy,exercising, and don't get me started on studying for my PhD in PD and managing my care team- oh, don't make me count the ways!
We bond over the worry for the future- income and expenses, paying bills, taking meds correctly, finding home care, paying for home care, keeping our living space safe and clean, keeping our loved ones coming back, swallowing, falling, wondering if I'll ever do the things I used to love so much- decorating for the holidays, making bread, etc- way too much to list, count or fit into my brain to worry about!

We have more in common than most people in the world and we share more care, compassion, understanding and even love then I could have ever wished for.

As bad as tickle tuesday is, I'm sure you would rather read those horrible stories than talk about emotions, good or bad, I am here to push you to do that anyway because I know you want to win this fight and you can't do that if you don't think healthy and live healthy. And, please don't worry about whether you can do it as well or badly as I do. My emotions were suppressed for so long, I can't get that Genie back in the bottle but you are amazing, YES YOU ARE! So, get your mind and heart in gear so we can get our bodies healthy and put PD in a bottle and toss it out in the ocean.
Please, Maria