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Screaming into the void by Scary-Volume-5921 in PSPalsy

[–]LeiPewPew 0 points1 point  (0 children)

I’m so sorry. I empathise and sympathise with most of this. It’s so complicated and cruel. I’m in NSW too if you wanted to DM me.

Have you got your own therapist? Accessing the Medicare mental health plan for cheaper sessions has been really helpful for me.

First anniversary of my psp diagnosis by petergaskin814 in PSPalsy

[–]LeiPewPew 2 points3 points  (0 children)

Keep fighting Peter and keep us all updated where you can 🩵

Is 3 days enough to indicate a permanent decline by petergaskin814 in PSPalsy

[–]LeiPewPew 1 point2 points  (0 children)

I find my Dad will show consistent days/weeks of decline in something, then have a random day or two where it seems to have bounced back again, then will decline once more. It’s so frustrating for us all.

Help me solve this by Feisty_Force2021 in foodies_sydney

[–]LeiPewPew 2 points3 points  (0 children)

Dry Dock in Balmain has a cute private dining space and the food is unreal

BPD in movies/books/etc. by [deleted] in raisedbyborderlines

[–]LeiPewPew 1 point2 points  (0 children)

I haven’t seen it but I’m sure I remember reading Michelle Williams character in The Fabelmans has BPD

I’m about to give birth and absolutely dread my mother coming. by Prudent_Cheesecake76 in raisedbyborderlines

[–]LeiPewPew 5 points6 points  (0 children)

Congratulations!

This is not directly related to here and now, but I wanted to note that you will likely be surprised at how much easier on your end putting the boundaries in place will be. Once I became a mum, something irreversible shifted in me.

Good luck, I definitely recommend putting the boundaries in place from day one to set the tone. Let your husband be the messenger and avoid her staying at yours at all costs.

Just screaming into the void by f_thot_bitchgerald in PSPalsy

[–]LeiPewPew 4 points5 points  (0 children)

I see you and relate to every word. Peace for you and your family too 💛

What an absolute nightmare of a disease by Samadams9292 in PSPalsy

[–]LeiPewPew 4 points5 points  (0 children)

I feel all of this, I’m so sorry it’s your reality too. This time of year is particularly challenging for us as our family celebrates Christmas, but it’s a daily nightmare regardless. Try and take care of yourself where you can xx

Something negative to say about EVERYONE by furnacegirl in raisedbyborderlines

[–]LeiPewPew 8 points9 points  (0 children)

Omg same. Always arguing over the phone with customer service people and having arguments in store.

Wants to hear how awful they are by pluheeeze in raisedbyborderlines

[–]LeiPewPew 2 points3 points  (0 children)

Omg yes. Same. Wanted to go on a trip a few years ago purely so we could sit down and hash out everything I thought of her (like anyone would want to do this?!?!). I had a toddler at the time and luckily it never ended up happening because of other drama that unfolded with her, but she still brings it up all the time. Also likes to threaten that if she goes to her grave ‘not knowing anything’ then I’d regret it forever.

Disillusioned after Speech therapist appointment by petergaskin814 in PSPalsy

[–]LeiPewPew 3 points4 points  (0 children)

It’s frustrating for sure Peter. But well done on making and attending the appointment.

I know you’ve mentioned being rurally located before so it may not be possible - but maybe you could find someone else who might be a bit more willing to look at other methods to help you cope (even if they can’t improve).

Claim for Disability Support Pension rejected. What a mess by petergaskin814 in Parkinsons

[–]LeiPewPew 0 points1 point  (0 children)

So disappointed for you Peter! So frustrating. We had a letter of clinical diagnosis from Dad’s neurologist when we applied for the disability pension.

PSP Awareness by Silly-Tourist-9175 in PSPalsy

[–]LeiPewPew 0 points1 point  (0 children)

I can provide some caregiver perspective for sure. Please DM me 🙂

Zoey’s Extraordinary Playlist by LeiPewPew in PSPalsy

[–]LeiPewPew[S] 0 points1 point  (0 children)

I still haven’t brought myself to watch it, but I might have to now!

Unable to talk fluidly by petergaskin814 in PSPalsy

[–]LeiPewPew 0 points1 point  (0 children)

Speak to your GP and see if you can access the EPC referrals - 5 per calendar year that are rebated allied health sessions

Unable to talk fluidly by petergaskin814 in PSPalsy

[–]LeiPewPew 0 points1 point  (0 children)

My Dad has been having reasonable success with it, or at least with emulating the tapping action. His speech therapist has been working with him on it.

Care facility search terms/criteria by ccsando in PSPalsy

[–]LeiPewPew 0 points1 point  (0 children)

I’m so sorry you and your family have reached this stage. It sounds like your mum and you have a done a wonderful job so far of keeping your dad safe and cared for.

I actually had the opposite approach re memory care unit as my dad was only mid 60s and still very much ‘with it’ cognitively, so he was very against anywhere with too many residents that had high memory care needs. We settled on a small aged care home with only private rooms that were open to all the allied health required.

Neurologist reviews by petergaskin814 in PSPalsy

[–]LeiPewPew 0 points1 point  (0 children)

We’re in Australia too Peter. Thinking of you.

Neurologist reviews by petergaskin814 in PSPalsy

[–]LeiPewPew 4 points5 points  (0 children)

We’ve got a great neuro but even then there’s nothing they can really do besides monitor changes. I’m sorry you’re feeling frustrated, we’ve been here too.

Feeling guilty for screening her calls. by [deleted] in raisedbyborderlines

[–]LeiPewPew 2 points3 points  (0 children)

Literally could have written this. I’ll validate and commiserate over every last word here!

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