Switched off


#1

Hi All

When I was switched off today I began speaking to my daughter in law about work as if I was still working.Ì could tell by the look on her face that something was wrong. I then quickly said I’m not working now. I actually felt as though I was in a dream.
My son phoned late to see if I was ok and I could hear my hubby saying I will speak to you later about it. This really upset me and I kept saying to my hubby what else do i do.He said its just when you are switched off you seem quite mixed up and then you are back to your usual self. I just can’t stop thinking about this.and also thinking what’s happening to me.
Has anything like this happened to any one else.
Thanks so much for reading it’s actually quite hard to put this down.

Babs


#2

Hi Babs,

Sounds like that incident really shook you. Maybe find out how long its been happening from your family. Have you changed any meds lately, if not, maybe they need tweaking? The nurse always asks at my appointment if i have hallucinations so obviously some meds have those side effects.
You sound like you have a loving and supportive family. Try not to be too anxious (i know that is hard) as your symptoms will go up.
Sorry not much help but I feel for you.


#3

Thanks so much for giving me a reply añd I am quite scared to ask any more. My meds have not changed.
I really do hate the thought of getting worse but I do know things are changing quite fast.
Thanks again for your support much appreciated.


#4

Hi Babswood
Sorry to hear of your new problems, but thank you for sharing it witrh us. I can understand your diffiulty in writing about it, but there may be someone out there who has had similar experiences. That’s the beauty of this Forum - you need never feel alone. It may take a while to get a reply but you will in the end. I wish there was a better way of putting posts into categories, but I guess that this is what we’ve got.

Anyway, just know that you are in our thoughts.
Good luck

Audrey


#5

Hi Babs
I don’t have PD but my husband does. Can l ask what is meant by switched off times?
Thank you in advance
Heather


#6

I can’t speak for Babs but during my " switched on " times I can feel almost as if the PD has gone away.
During " switched off " times, I can barely operate. No energy. Lethargic. Can’t concentrate.
Getting out of a chair is a major effort.
Hubby


#7

Hi Hubby
Thank you for your reply. My husband has mainly switched off times. I would say he would very rarely have a time when he was PD free. However, he has been diagnosed with Parkinsonism with Lewy body dementia and as the PD meds don’t work I can now see why.
Have a good day in the sunshine.
Hettiedoll


#8

Thanks so much for replying.

Just to know someone else has experienced this would make me feel better.

Thanks again.
Babsx


#9

Hi there

When your switched off drugs not working.

When your on drugs working.

Both my PD nurse and NEurologist always use this term.

Babs x


#10

Hi there I’m like you sometimes nearly forget my meds as when I’m on I feel normal.

I used to have terrible shakes down my right side but now it’s my jaw keeps going and my teeth chatteriñg it also affects my speach when I’m off

Babsx


#11

Hi @babswood,

I see you’ve already received some supportive comments from other members which is great to see.

This sounds like a really frightening experience and I’m really sorry that this has happened to you. I agree with Divine1, your medication may need tweaking, therefore, you should definitely raise this with your GP or Parkinson’s nurse as soon as possible. As you know, you can always contact our helpline and speak to a Parkinson’s nurse about this if you’d like to speak to one sooner rather than later.

Do take care and all the best,

Reah


#12

Thanks Reah


#13

Hi folks I spoke with my sister in law who thinks albeit for a short time I was actually sleeping and saying out loud what was in my dream.i can just close my eyes and I fall asleep. I am so tired all the time.

So folks that’s my excuse and I’m sticking to it unless anyone can tell me more.

After all I am still recovering from major surgery.

Babs who is most deffo not going off her head. Ha ha.


#14

Sometimes I think when I’m off you’ve not got such a foggy head as when your on your on full alert ,I would say it’s nice now and then but don’t think it’s nothing to worry about think it’s your body relaxing for a bit


#15

Hi Babs,
It sounds likely that you may have been talking in your sleep. Its good to get it out of your system and tell someone so you don’t get too anxious.
Take care.


#16

Hi babswood

When I was first put on medication mirapexin to be precise, I used to talk the utmost drivel and look at the bewildered faces on my kids and realise that I had been talking a load of rubbish lol. Most likely this issue is down to medications so get a review of your medicine asap Peter


#17

Hi Babs
I must say firstly I have not read all the replays to your post so I may duplicating, sorry.
I have asked my immediate family to write down the changes they see in me that I may not be aware of for my next consultant appointment but also for me to be aware. My son has said already that he knows when I’m tired or possibly in switched off mode because my voice breaks up, I never realised that but I have also noticed that my ‘resting’ face as I call it is very miserable looking. In a way I find it all quite sad but at least if I am aware I might be able to try and rectify some we shall see. Take care


#18

Thanks for your post.

That actually sounds like a good idea.i think I will get my family to do that.

Best Wishes Babs x