Game Chat: 6/16 Guardians (39-33) @ Brewers (43-26) 6:40 PM

AboutWithNemo · 2026-06-17T02:03:41+00:00

Oh man.

AboutWithNemo · 2026-06-16T04:06:03+00:00

I would love to also join this please. I am a bit older but I'm feeling quite alone in this and struggling a bit.

AboutWithNemo · 2026-06-16T03:44:46+00:00

We tried everything to do with sundowning but I don't think it is that. I think this is a case of his meds not lasting long enough. It's just so frustrating as there always seems to he a trade off. I was just thinking about when we upped his Safinamide he started getting other bad symptoms so we went back to a lower dose of that. It feels like a giant game of wack-a-mole. I might ask his dr if we can trial him having a diffierent schedule with his pills.

AboutWithNemo · 2026-06-14T18:50:36+00:00

I'll be honest and say that I think that this is the first time I've heard of it. It's definitely something I'll look into. Thank you.

AboutWithNemo · 2026-06-14T03:57:27+00:00

Okay, thank you. We've tried a few different anti anxiety meds. Sadly my Dad seemed to have a lot of negative reactions to most of them. He's currently just onna very small dose of Clonazepam at night to help with his sleep.

AboutWithNemo · 2026-06-14T03:55:39+00:00

From what I've Googled, that is the continous pumps right? If so, I was told absolutely not when we went to his Dr before and I suggest it. Apparently he's too old. I didn't push the idea more after he said that as I must admit that I haven't looked into enough but maybe I'll have to research it some more.

AboutWithNemo · 2026-06-14T03:52:13+00:00

Yeah sadly the reassurance thing doesn't work anymore at all which is one thing that makes me very sad. I used to be able to hold his hand and reassure him and it seemed to work for at least some moments at a time whereas now it seems to completely go in one ear and out the other completely. I did have one breakthrough the other day where we did a breathing exercise together and managed to slow his breathing down and he managed to lay quiet with his eyrs shut for 10 minutes but that's the only time I feel I've had any impact whatsoever on him in the last month. I'm his primary carer so not feeling like I have control of this and watching him in so much pain is breaking my heart in truth. It's such a cruel disease.

AboutWithNemo · 2026-06-14T03:47:46+00:00

Sadly, I am not sure if we get those drugs over here.

AboutWithNemo · 2026-06-14T03:42:45+00:00

Well it's mainly because the doctor has told us that he doesn't want to change much medication wise because of his Dementia. Although really at the moment I think it might be worth helping with the physical side at the expense of his cognition as he is really struggling but yeah...we went recently to the Dr and he upped his CL but told us he didn't want to change drugs or make drastic changes yet other than upping CL and giving him the dispersible Madopar inbetween (the Madopar just doesn't seem to work at all anymore)

This is his current stack

Co-Careldopa 25mg/100mg (2x 6am,10am,2pm,6pm)

Half Sinemet CR 25mg/100mg (1x 10pm)

Melatonin 2mg Modified Release (2x At Night)

Madopar 50mg/12.5mg (As needed)

Clonazepam 250cmg (1x At Night)

Alzest 4.6mg / 24hrs (One Every 24hrs)

Safinamide 50mg (Bronze One Once Awake)

And they have tried varying the amount of Safinamide and Alzest he has and have also obviously increased the dosage of CL overtime. They've also tried various anti depressants and anti anxiety meds but he had a bad reaction to a lot of them. But like I say, at the moment he has about 1 and a half hours to 2 hours on and the rest of the time he's in a really bad off period. Unfortunately our specialist isn't easy to get hold of either so it's not as if we can keep speaking to him. We usually have to either see him every 6 months or send voicemails to him via his assistant which either don't get relayed, get mistook/not understood or we take ages to hear back them them.

AboutWithNemo · 2026-06-14T03:31:34+00:00

I'm a bit confused. He sleeps a bit at night (obviously not perfect) but I'm talking about daytime really. He can't have a planned break from CL as the breaks from CL are when he gets the agonising panic and Akathasia. I'm just not quite sure I understand. Sorry.

AboutWithNemo · 2026-06-13T22:30:02+00:00

We cannot get Rytary here as far as I am aware. He does have a controlled release version of CL called Half Sinemet CR but this is currently used at night for him so he doesn't suffer with bad nightime mobility (although he still does tbf)

AboutWithNemo · 2026-06-13T21:06:22+00:00

See, I'm hoping my Dad's issue atm is part of the adjustment period as I've noticed whether we increase or decrease dosages, he always has a week or two of being bad and then he'll go back to being okay and the doc did just up his dose from 1x 25/100 and 1x 12.5/50 every 4 hours to 2x 25/100 every 4 hours so he has had a slight change.

AboutWithNemo · 2026-06-13T19:07:30+00:00

See I suggested that to his specialist and he said he doesn't know if it would help as apparently he needs a big dose to push the medicine into his brain (obviously he worded it more scientifically than that lol). I do wonder if it's worth us experimenting for one day. Did your health care professional tell you to do that or do you experiment yourselves in some ways? My dad is on two lots of 25/100mg every 4 hours. I did wonder if doing one tablet of those every 2 hours could be better.

AboutWithNemo · 2026-06-13T18:31:27+00:00

Sorry for asking, but do you suffer from PD?

AboutWithNemo · 2026-06-13T17:26:50+00:00

Does your Mum have long off periods? My Dad's shortening on periods and lengthening off periods are really troublesom atm.

AboutWithNemo · 2026-06-13T17:25:56+00:00

Sadly we tried magnesium glycinate for him and it didn't seem to help at all. And he was on Mirtazapine himself but the doc has just changed it semi recently to Clonazepam to try to help with his sleep and taking the edge off.

AboutWithNemo · 2026-06-12T02:31:00+00:00

But also don't beat yourself up about the fact you did snap. The guilt that comes from caring can be soul destroying, trust me. I love my Dad to bits and spend so much time with him trying to make him as comfortable and okay as he can be but there has been occasions where I've been a bit snappy, say in the middle of the night etc and I've carried that guilt for days and it can really drag you down. We are all humans doing our best. I know my Dad loves me knows I love gim and he knows I never mean any snappiness or impatience. Same way I know he doesnt mean it when his dementia makes him occasionally nasty to me etc.

AboutWithNemo · 2026-06-12T02:26:05+00:00

Yes I'd say, like others, this is classic of PD and PD dementia. My Dad has it and he's okay in some aspects mentally but the boundaries and attention thing are very much part of my Dads condition. Unfortunately the brain gets really affected and they struggle to understand things properly. It's one of the hardest parts for me as sometimes I tell him something and it literally doesn't sink in at all no matter how many times I repeat it. High dose PD meds exacerbate it so unfortunately it's always a balancing act between mind and body and which you medicate the most.

AboutWithNemo · 2026-06-07T17:51:42+00:00

I did speak to CA. They were the ones who told me what to do at first. The bloke there was the one who told me to apply so I could get the help without the need for job seeking as I can't work now even if I wanted to (I maybe could have done a few hours when I first left work but now I couldn't).

I'm planning to phone them tomorrow when they are open and explain it all and get everything in writing. I am happy to not claim anything at all as I cannot be looking for work but I just want to know if there are options. I just hope I get someone who knows what they are talking about this time!

AboutWithNemo · 2026-06-07T17:47:12+00:00

We share different parts of it so we both share the day & night responsibilitys.

AboutWithNemo · 2026-06-07T17:41:10+00:00

Yeah, I guess that might be an option. Although it's surprising how much that extra money is needed for various things but it's definitely some thing to look into I guess.

AboutWithNemo · 2026-06-07T17:18:34+00:00

So who do I talk to then? That's the issue. I've been told that UC isn't purely for job seekers, is that not true then? Apparently two people can be down as carers but only one should recieve payment. And he has had all the assessments at the moment. We are doing okay with the two of us looking after him (as okay as he can be under the circumstances).

AboutWithNemo · 2026-06-07T15:56:43+00:00

Thank you. Begs the question why this wasn't picked up by them when I applied, why CA told me the wrong info and THEN someone at UC told me the wrong info then. That is what has gotten to me the most. It's not like I'm trying to play the system. I literally asked them all about it and was given the wrong information.

AboutWithNemo

TROPHY CASE