Alzheimer’s Pride

I have Alzheimer’s Disease and I’m proud of it. I’m not happy about it – who would be? – but there’s nothing I can do to change it. So I intend to embrace it.

There is so much prejudice and misunderstanding around Alzheimers. People don’t know about dementia in general, or Alzheimer’s in particular. So there’s a need for more education.

The A Word

Back to the Anne Rowling Clinic for a diagnosis. Lovely neurologist shows me the scans..there are gaps between parts of my brain and my skull where there really shouldn’t be gaps. On the SPECT scan most of my brain is orange except for the bright blue bits.

It’s interesting what isn’t shown. Alzheimer’s normally starts in the hippocampus – the memory centre, but I have no atrophy there. So my episodic memory is good, I know what happened last month and last week.

We discuss my vision: he suggests I need to stop driving. I nod along to this, not too sure I’m really taking it in. On the way back I go rather faster than I should.

He wants me to go on a drug that may slow the progress of the disease. Explains that whether I have MCI or dementia is largely irrelevant as the key thing is that the scans plus the CSF analysis confirm Alzheimers.

I had determined to buy a box of chocolates for the team who did my lumbar puncture -as they were so lovely . On my way to deliver the gift I came across a lady playing a harp in a corner of the hospital. I feel quite overcome.

A letter

The Neurologist copies me in to a letter from him to my GP saying that MRI shows bilateral parietal damage and that this leads him to suspect Alzheimers. He’s still waiting on the analysis of the fluid.

The A word has been used quite a bit – but I hadn’t seen it written down as a possible diagnosis before, and it hits me hard.

Scans and Things

I get the MRI done -what a weird experience, being stuck inside a metal tube for half an hour with Thor striking his anvil just beside your head. Glad when it’s over

Then the Lumbar Puncture, in which cerebrospinal fluid is taken from your spine. Not nice at all …it took three separate lots of Doctors to get it right. They were all lovely, but it was tiring and somewhat painful despite local anaesthetic. And all for a tiny amount of the fluid, which looks for all the world like water.

More tests

The Neurologist I get to see at the Anne Rowling clinic is lovely. He says that there’s clearly something going on, but he’s not sure quite what – do is sending me for an MRI scan and a Lumbar Puncture.

He says that whilst I’m not at a stage that classified as dementia I go have Mild Cognitive Impairment -which isn’t as benign as it sounds. Means that elements of my cognition are worse than they should be for a person of my age.

Seeing things

I wasn’t aware of having vision difficulties – except that a few days later I momentarily lost the sight in my left eye. And when it returned I could see a light grey speckled blob,

I was able to get an appointment at the local optometrist’s who assured me that yes, there was a problem with my eye / do booked me into the eye hospital. She showed me the retinal picture, complete with blob.

However, at the eye hospital they did a retinal scan which showed no real blob. It’s explained to me that the imageI see isn’t real, and is generated by the mind.

Later I get a new phenomenon -when I look at shiny white surfaces such as basins they seem covered in thousands of grey hairs. To say this is disconcerting is putting it mildly.

I see a grey blob in my left eye..but it’s not really there

I see thousands of grey hairs in surfaces like porcelain basins or white shower trays – but they’re not really there