Have you ever....?

aprilbday

Registered User
Jan 27, 2016
329
0
Washington, DC USA
Have you ever posted a comment or topic here and practically have no memory of writing it?

Have you ever read your post as if you are reading it for the first time?

Have you ever started reading or writing a post here and just gave up trying to get through it?

Do paragraphs jumble? Do sentences run?

Are there times you feel you can write a thesis, while other times anything over three sentences is too long?

Or even just looking at any writing is a ball of matted hair?

A mess. I think I am a mess.

(42 minutes on this post)

......add another 10 or more as I just went back over a few sentences. Hitting "create" before it's another hour
 

Grannie G

Volunteer Moderator
Apr 3, 2006
81,455
0
Kent
The fact you managed to post shows how determined you still are aprilday.

I do hope you get lots of support and manage to find any replies you receive.
 

john51

Registered User
Apr 26, 2014
292
0
Dunstable, Bedfordshire
Yes April it sounds all too familiar.
Do take heart that there are 'thesis' days.
Recently I wrote a report which formed the basis for a lab to do something. I have no memory of having done the research or writing the report!
Do enjoy the good days and try not to get down on the bad. (Pretty well impossible for us I know )
 

The Chewtor

Registered User
Feb 6, 2016
295
0
68
Gillingham, Kent
O yes April I am very much afraid to say I do know those days only too well, the good and the bad. It used to just be 'a day'. Through your repilies to my posts and my reading of your posts I am getting a picture of what MY days are like and I must say that I do not like it much.

Keep up the fight cus no-one is going to do it for you, they can only do their utmost to help you do it!

Wayne x
 

creativesarah

Registered User
Apr 22, 2010
9,638
0
Upton Northamptonshire
Well done aprilbday I had to scroll back to remember your name!

Keep persevering it's a big fight but we will make the best of what we have

I can tell you are a candle lighting sort of person

as in 'Don't curse the Darkness - light a candle'

This is one of my photos that I have taken

I have got a website if you are interested

www.creativesarah.weebly.com
 

Attachments

  • don't curse the darkness.jpg
    don't curse the darkness.jpg
    60.3 KB · Views: 610

aprilbday

Registered User
Jan 27, 2016
329
0
Washington, DC USA
John,
BINGO! That's what I mean! Hours of work -excellent thought and logic and effort but ....not recollecting that you did it. You see your name. It seems very familiar ...but yet unknown.
Just a mess!
 

aprilbday

Registered User
Jan 27, 2016
329
0
Washington, DC USA
Creativesarah

Yes. I do hold on to the light with every fiber of my being.
When I am gone from this world, I want to follow that light to peace, joy and love.

I love your art passion!
 

aprilbday

Registered User
Jan 27, 2016
329
0
Washington, DC USA
Hi Wayne,
I am grateful that it is not every day. I feel bad to feel know that you suffer so, thank you for responding.
I am still working. It's getting harder.
 

john51

Registered User
Apr 26, 2014
292
0
Dunstable, Bedfordshire
April and Wayne

I think you are both got your dementia diagnoses not very long ago.

I now have the vast experience of 2 years!

You both sound quite low in your posts.

As you start to find your limits it does become easier..at least on the good days.

I'm sure all of us on TP will do our best to help you through it.

Like you all of us with a dementia diagnosis have the blackest of times. I think sometimes our carers have even blacker ones.

Come on guys lets do this together..

John
 

The Chewtor

Registered User
Feb 6, 2016
295
0
68
Gillingham, Kent
low times

thank you John for your supportive words of vast (2 years) wisdom. yes I am very new and finding this rollercoaster scary, exhilarating, fast and shaky. I was pleased atr first to get a diagnosis but very quickly became upset, scared and tree kicking angry. my foot still hurts but the tree was ok after a hug ( I don't have a dog as you can see).

at times, here, TP feels like the best and most secure place in the world. how sad is that.

wayne
 

BillBRNC

Registered User
Jan 26, 2016
40
0
USA NC
I see things I wrote yesterday and don't recall having written it or having even read the entire topic. It just blows my mind that I can see it and have no memory at all of having written something or read something just earlier in the same day. My memory of other things isn't nearly as bad as when it comes to remember a written thing or writing something. I wonder why that is.
 

LoisJean

Registered User
Jan 11, 2016
93
0
76
Northeast Lower Michigan, USA
Oh, yes, Aprilbday..that's me too. All of you who have responded to this thread..it's me too. I am such a newcomer to this and yet, I know that these symptoms and more have been with me for a long, long time. I just never saw them as dementia and neither did any one else. I was treated for depression, ADD... and maybe those things factored in, but now i see the cognitive decline was beginning with me years ago..just like the decline I observed in my mom--but it was never diagnosed in her. A vascular surgeon has diagnosed me with vascular dementia. but he can't treat me. I have no idea when I will get the appointment to the neurologist the surgeon referred me to...they say not until September at least.

I lose words, they form but will not drop down to my mouth. Sometimes this happens mid sentence. I read but often now the letters seem to reposition themselves or smiply idisppear. I can see the errors in this last sentence..my think my fingers f are in the right place, the reality is they are not. A large number of red underlines bothers me greatly.

What I have learned here is true: there are some good days when I am bright and alert..when my brain doesn't feel like a hundred pound bowling ball; when I can process thought and make decisions without having to go over them again and again and again or when I can recall with little difficulty that I actually ate during the day.

A thousand notes. I find them everywhere now and don't have any recall what they are about..what was I to do with them and when was i to do it. Almost every day is filled with such hesitations and uncertainties. some days I'm terrified;;other days I'm calm in the midst of my chaos. I seem to have lost my sense of good orderly direction.

I try to keep my focus on what I can do: I still know where I am, where I'm going and how to get home. I can still drive, visit friends, go to the store. I can still use the phone. I can still remember names and faces. This helps to take the sting out of the fact that I am beginning to sense a bloom of apathy taking over my emotions and then, without warning- deep anger from some invisible trigger.

I respond verbally now to tv characters..actually found myself carrying on a converstation with one of them on an old Law and Order re-run.

I also see that I am far wordier than I ever used to be. I almost feel that if I don't get them all out right now, I'll forget them and that will somehow diminish me. Perhaps, like creativesarah, Norrms and so many others here I'll try writing daily..some sort of story about me. Maybe try my hand at poetry again.

So sorry for the long post..but thanks, too..aprilbday for starting this thread.. I keep forgetting that I can start a thread, too, when I have questions and concerns or just need to release. Peace, LoisJean
 

The Chewtor

Registered User
Feb 6, 2016
295
0
68
Gillingham, Kent
writing daily

Oh, yes, Aprilbday..that's me too. All of you who have responded to this thread..it's me too. I am such a newcomer to this and yet, I know that these symptoms and more have been with me for a long, long time. I just never saw them as dementia and neither did any one else. I was treated for depression, ADD... and maybe those things factored in, but now i see the cognitive decline was beginning with me years ago..just like the decline I observed in my mom--but it was never diagnosed in her. A vascular surgeon has diagnosed me with vascular dementia. but he can't treat me. I have no idea when I will get the appointment to the neurologist the surgeon referred me to...they say not until September at least.

I lose words, they form but will not drop down to my mouth. Sometimes this happens mid sentence. I read but often now the letters seem to reposition themselves or smiply idisppear. I can see the errors in this last sentence..my think my fingers f are in the right place, the reality is they are not. A large number of red underlines bothers me greatly.


What I have learned here is true: there are some good days when I am bright and alert..when my brain doesn't feel like a hundred pound bowling ball; when I can process thought and make decisions without having to go over them again and again and again or when I can recall with little difficulty that I actually ate during the day.

A thousand notes. I find them everywhere now and don't have any recall what they are about..what was I to do with them and when was i to do it. Almost every day is filled with such hesitations and uncertainties. some days I'm terrified;;other days I'm calm in the midst of my chaos. I seem to have lost my sense of good orderly direction.

I try to keep my focus on what I can do: I still know where I am, where I'm going and how to get home. I can still drive, visit friends, go to the store. I can still use the phone. I can still remember names and faces. This helps to take the sting out of the fact that I am beginning to sense a bloom of apathy taking over my emotions and then, without warning- deep anger from some invisible trigger.

I respond verbally now to tv characters..actually found myself carrying on a converstation with one of them on an old Law and Order re-run.

I also see that I am far wordier than I ever used to be. I almost feel that if I don't get them all out right now, I'll forget them and that will somehow diminish me. Perhaps, like creativesarah, Norrms and so many others here I'll try writing daily..some sort of story about me. Maybe try my hand at poetry again.

So sorry for the long post..but thanks, too..aprilbday for starting this thread.. I keep forgetting that I can start a thread, too, when I have questions and concerns or just need to release. Peace, LoisJean




i think you should get back to poetry and writing daily if you can as it does help even if only to get todays thoughts in order ha ha. besides if you are going to get all the hours i lose it will be a productive way to use them LOL ;) i still need the last lot back to replace those i now spend doing the blog

wayne
 

aprilbday

Registered User
Jan 27, 2016
329
0
Washington, DC USA
Oh John1 you are such a dear! Thank you for such encouragement. In addition to this darn dementia, I need that encouragement for:
⭕️Bone-on-bone arthritis in my knees-severe.
⭕Spinal -Cervical spinal stenosis with myelopathy
⭕Permanent Acid reflux from having stomach surgery
⭕️Lumbar stenosis

So I need that encouragement! Still working!!!
 

shelagh

Registered User
Sep 28, 2009
476
0
Staffordshire
Yes I have

I've done all those things and do them more and more. Six years from diagnosis and I am going downhill not fast but very definitely. I can give a paper on Kafka at my UIII A group and work as a counsellor but on those days I can't get dressed without help because I can't remember what goes on first. I can go to London to speak for an Alzheimer's Society away day, But unless I have assistance at the station I will get on the wrong train - done that so often. Now I reach a very frightening stage when can't believe I live in this apartment. Seen that stage in my family - we have had a lot of dementia. But hey today and went to Manchester and had a fabulous lunch with my 22 year old grandson and life is still good. We carry on because we have to.


i think you should get back to poet because I can't carry the platform number in my head for 15 seconds. ry and writing daily if you can as it does help even if only to get todays thoughts in order ha ha. besides if you are going to get all the hours i lose it will be a productive way to use them LOL ;) i still need the last lot back to replace those i now spend doing the blog

wayne
 

Irishgirl57

Registered User
Jan 21, 2014
189
0
66
Florida, USA
I can so relate, and obviously so can a lot of other people. I see responses that I wrote to people when I say wow that was great I sounded wonderful, I wish I could remember it. Whole conversations with my husband that I don't remember. Try not to beat myself up ...

I like what John said, we can do this together ... Yes we can!
 

Dementia newbie

Registered User
Mar 3, 2016
9
0
Clicked my 'like' button for this:

"thank you John for your supportive words of vast (2 years) wisdom. yes I am very new and finding this rollercoaster scary, exhilarating, fast and shaky. I was pleased atr first to get a diagnosis but very quickly became upset, scared and tree kicking angry. my foot still hurts but the tree was ok after a hug ( I don't have a dog as you can see)."

And wanted to click it twice for this bit:

'at times, here, TP feels like the best and most secure place in the world. how sad is that.'

But only allowed 1 'like' per post.