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Welcome to the D Club

Sarasa

Volunteer Host
Apr 13, 2018
3,721
0
Golly @WJG, you do have a lot on your plate, but so glad the trust are being so thorough at trying to get to the bottom of things. I don't live in Scotland, but I had a friend who did for a while. One of the people she lived with had cancer and I was impressed that in Scotland as well as her medical treatment there were well-being and alternative treatments such as reiki she could access as well.
 

WJG

Registered User
Sep 13, 2020
112
0
Thought I would try and show what's going on. This light grey blob is what I see through my left eye - only its not really there. The camera in the eye isn't putting it there - it's the fault of the picture processing lab at the back of my head.
 

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WJG

Registered User
Sep 13, 2020
112
0
Oh how fabulous...another set of symptoms manifest themselves. I've started to feel dizzy most of the time, and when I look at shiny white surfaces they all seem to covered in gone grey lines, like tangled hair . Can't say I'm too fond of learning not to believe my eyes. I had a letter from the eye hospital confirming that my vision difficulties are 'probably cortical'. This seems to have hit me hard.
 

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WJG

Registered User
Sep 13, 2020
112
0
I’m sorry to read this @WJG . It must be very difficult. Do you have anyone with you who can confirm wether what you see is real?
I'm only to too aware that it isn't real...which makes it all very strange
 

WJG

Registered User
Sep 13, 2020
112
0
Lumbar puncture yesterday. Not very nice to be frank, although all the staff were lovely. First the junior Doctor had a go - but couldn't get more than a few drops of fluid - so he tried again in a different place, without success. So they sent for the more experienced Dr, who also had a couple of goes....so they sent for the Head Doc - who repositioned me, took longer working out where to aim his darts, and scored 180. An hour and a half of lying on my side - not pleasant. But the staff were just absolutely wonderful.
Today I get a copy of a letter from Neurologist to GP. It doesn't surprise me, but seeing it written down pulls me up short.
As does the reaction of a friend who works in social care, who suggests this is all just part of normal aging. This, for heaven's sake, is a chap who regularly deals with adults with dementia. Really takes the wind out of my sails.
 

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Jaded'n'faded

Registered User
Jan 23, 2019
2,026
0
High Peak
Your friend needs educating - Alzheimers is absolutely not part of normal aging. As you say, very frustrating to hear this from someone who works in the dementia field.

Sorry to hear of your awful LP experience :(
 

Sarasa

Volunteer Host
Apr 13, 2018
3,721
0
I'm so glad the professional are taking it seriously @WJG. You are being amazing, a shame that your friend doesn't understand, though I think they are probably trying to be supportive.
 

Browny10

Registered User
Dec 20, 2019
64
0
My wife has Alzheimer's and my feelings were similar and I wrote a commentary I called "I've got the T Shirt"
I've Got the T- Shirt

Yes I know, I understand, I've been there, I've got the T-Shirt, I've not really just been there I am there.

It all starts, well I don't know when it starts, just the little things, things that don't matter things that don't really matter. Tomorrow they will be fine, tomorrow it will be different.

And then there's the thing that happens, you don't mention it but it hurts. On the day it just jolts you but perhaps it's a one off.

Then there are the words they say, the words, the little phrases everyone tells you to ignore, who are you?, where is my husband?, my wife?, I'm going home tomorrow. Little words little phrases that cut into you so deep so hard you can hardly breathe, you can't breathe, it's not me it's not them how can it be us, we love each other so much, why, why, why.

Then someone mentions the D word, I don't want the D word , it's not for them it's not for us , Don't say it!.

When you wake every morning that feelings still there deep deep in your stomach, then there is that day, it comes back to you, the day you think you know when it was, then it hits you, and you are alone, they are drifting away, not us, no not the one I love.

Everything changes, you wish it was the same, but it's not, stop it changing. They use the D word more and more, they give you leaflets more leaflets, but they are just words on paper they are not for me, not for us.

Then you eventually can say Dementia out loud, not a lot just occasionally. You are no longer frightened of the word, it's sort of there, it's not that bad.

And then when you thought you were all alone a voice on the phone says Yes , says it again Yes I understand, really understand, and yes we can we can come to you, talk to you, listen to you.

The knock comes to the door you talk, you talk, you talk, and they listen they understand, they want to understand they truly understand. You are not sure what they are saying but it doesn't matter , they are here for me for us and they have answers, they have solutions.

They know where to get that thing that little thing, that niggle, sorted and you feel you can breathe, they are making the changes easier to handle.

You want to grab the finger tips, you don't want to let go, it's there in front of you, what you want to know, what you want to hear.

And the second they give you the hope, the feeling that they are walking in your footstep, no matter how small, how little the steps, you feel so much comfort so much relief you want to thank them not just a thank you, you really want to show them that you know they are helping.

I know, I've been there, I've got the T-shirt.
 

WJG

Registered User
Sep 13, 2020
112
0
My wife has Alzheimer's and my feelings were similar and I wrote a commentary I called "I've got the T Shirt"
I've Got the T- Shirt

Yes I know, I understand, I've been there, I've got the T-Shirt, I've not really just been there I am there.

It all starts, well I don't know when it starts, just the little things, things that don't matter things that don't really matter. Tomorrow they will be fine, tomorrow it will be different.

And then there's the thing that happens, you don't mention it but it hurts. On the day it just jolts you but perhaps it's a one off.

Then there are the words they say, the words, the little phrases everyone tells you to ignore, who are you?, where is my husband?, my wife?, I'm going home tomorrow. Little words little phrases that cut into you so deep so hard you can hardly breathe, you can't breathe, it's not me it's not them how can it be us, we love each other so much, why, why, why.

Then someone mentions the D word, I don't want the D word , it's not for them it's not for us , Don't say it!.

When you wake every morning that feelings still there deep deep in your stomach, then there is that day, it comes back to you, the day you think you know when it was, then it hits you, and you are alone, they are drifting away, not us, no not the one I love.

Everything changes, you wish it was the same, but it's not, stop it changing. They use the D word more and more, they give you leaflets more leaflets, but they are just words on paper they are not for me, not for us.

Then you eventually can say Dementia out loud, not a lot just occasionally. You are no longer frightened of the word, it's sort of there, it's not that bad.

And then when you thought you were all alone a voice on the phone says Yes , says it again Yes I understand, really understand, and yes we can we can come to you, talk to you, listen to you.

The knock comes to the door you talk, you talk, you talk, and they listen they understand, they want to understand they truly understand. You are not sure what they are saying but it doesn't matter , they are here for me for us and they have answers, they have solutions.

They know where to get that thing that little thing, that niggle, sorted and you feel you can breathe, they are making the changes easier to handle.

You want to grab the finger tips, you don't want to let go, it's there in front of you, what you want to know, what you want to hear.

And the second they give you the hope, the feeling that they are walking in your footstep, no matter how small, how little the steps, you feel so much comfort so much relief you want to thank them not just a thank you, you really want to show them that you know they are helping.

I know, I've been there, I've got the T-shirt.
Funnily enough, I’ve been wondering whether I get literally get a T shirt printed with a picture of my scan/s. I’m bored with explaining that I have atrophy beyond the norm for my age. But a T shirt might show this...
 

WJG

Registered User
Sep 13, 2020
112
0
And yes (drum roll please!) it’s DEFINITIVE DIAGNOSIS DAY!!

The scans gabbed scanned, my cerebrospinal spinal fluid analysed and I have bona fide Alzheimers. But with little current damage to my hippocampus so my memory is intact. Yet with usual disturbances, although not ones associated with Posterior Cortical Atrophy.

Was feeling a little relieved to get a diagnosis - but this is tempered by advice to stop driving now rather than later.
 

Sarasa

Volunteer Host
Apr 13, 2018
3,721
0
Glad you've got the diagnosis @WJG, though also sorry that it is confirmed as Alzheimer's.
Keep posting as you know you'll get lots of support here. I hope that in real life your friends accept the diagnosis and do what they can to help.
 

WJG

Registered User
Sep 13, 2020
112
0
Glad you've got the diagnosis @WJG, though also sorry that it is confirmed as Alzheimer's.
Keep posting as you know you'll get lots of support here. I hope that in real life your friends accept the diagnosis and do what they can to help.
Thanks
 

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