As Time Goes By

It's still the same old story.....

You lose yourself, you reappear

You suddenly find you got nothing to fear

Alone you stand with nobody near

When a trembling distant voice, unclear

Startles your sleeping ears to hear

Someone thinks they really found you

Bob Dylan

It's All Right, Ma (I'm only Bleeding)

Dear friends,

I am raising funds for the National Brain Appeal, more of which I will explain later.

The reason I wish to do this is personal, and twofold.  My mother, Anna, once McMullin but latterly Gibbs, died recently after a long and lovely life, but her last years and especially the last months were afflicted by an undiagnosed dementia which ultimately robbed her of speech, and understanding, and life.

When I took her to see a specialist, a while after my father, her husband of 64 years, had died in 2010, I was told that she had dementia but that it would be difficult, and ultimately of little purpose, to test her further to determine exactly what nature of dementia she had.  And so, conveniently, she was said to have Alzheimer's disease.

What difference it makes I cannot tell, but I am inclined to a different diagnosis, which is that she had Dementia with Lewy bodies, the very same that may have stolen Lear's sanity in the mists of Shakespearean tragedy.

Why do I think this?  My mother heard voices, thought people were there when they weren't (including my father).  She got up too early and then was confused that the shops/church/market stalls were not open. She was unsteady, unbalanced, and fell.  

I was called early one day, not very long after her ninetieth birthday, when her neighbours had found her bleeding from the head having fallen against a radiator in her bedroom and bursting her right eye. She had thought that someone was there.  She never lived alone in her own home again.  The operation at Moorfields, (following admission to the Accident and Emergency unit at Watford General) with anaesthesia and trauma, at the age of ninety, left her unable to reason or to look after herself.

That was over six years ago.  Her decline was steady, from smiling and talking she reduced, gradually, and, I hope to think, painlessly, to a gaunt frame in a wheeled chair, still able to chuckle and say thank you, but usually grinding her teeth and holding on, as if the world was spinning too fast.

Now she is at peace, and I am sure she is relieved.  

I am hoping, attempting, to raise funds for the national Brain Appeal.

Another reason, personally, why I wish to do this, is that my wife, Amanda, the mother of our two girls, is also affected by dementia.  This time it is a type of dementia known as Semantic Dementia.  This, as the title suggests, affects words and understanding, and now, about eight years since the symptoms became concerning, verbal communication is almost beyond us..... 


Bit by bit she declines…..

Initially Amanda was diagnosed with Early Onset Alzheimer's, and spent a year ingesting Donepezil Hydrochloride (which can cause stomach upset, cramps and sleep disturbances) as if it might make a difference. 

We don't know if it made a difference. 

There was no controlled experiment, and, as we discovered following my insistence that I didn't think this was a correct diagnosis, she didn't/doesn't have Alzheimer's.....  So the drug (at whatever cost) was useless (but at what cost?)

No, after brain scans, neurological examinations, extensive, exhausting testing, and lots of anxiety, the diagnosis was amended to Semantic Dementia, sometimes referred to as Primary Progressive Aphasia (though that, in itself, is a form of Fronto-temporal Dementia and an umbrella for more than one form of dementia.)

And these terms mean little, or nothing, to me and her, us, the family, the patients, the sufferers, the public.  They mean nothing, because there is nothing, currently, that can be done about it, and nothing, currently, that any government will do about it.  

It is a road sign.  It says One Way Street.  This way to decline and death.  

Well.  We will all die.  Yup.  And we don't exactly know when, or how.  But, for some it is unannounced, so the life flutters on until it flutters off.  As Dylan sang, 

He not busy being born, is busy dying......

But it's alright, Ma, I can make it

In Amanda's case, it has been announced, and the brain is shutting down.  

Anyway, 

there is a reason for this subdued story telling.

I have been supporting the Alzheimer's Society for years now (and still am) but have recently found that The National Brain Appeal has a direct link with the Dementia Research Centre at University College London Hospital (UCLH) where Dr Jonathan Schott is overseeing Amanda and the progression of her disease. The specialism  here is in the rarer types of dementia, such as Dementia with Lewy bodies (as my mum probably had) and Semantic Dementia (as Amanda securely has.)

And so I want to raise money for them....

Which is where you come in.

I have produced two calendars for 2020, and I know you would love to buy one and to contribute to this worthy cause.  Both calendars are simple A4 page-to-a-month,  though they are slightly different formats and slightly different papers.  One is made up of  landscape photographs taken in the UK; the other consists of photographs taken in mainland Europe.  Either will look impressive on your wall for an entire twelve months, or would make a wonderful Christmas present, so please don't hold back.....

Each calendar cost me around £6 to produce (I am afraid I cannot compete with mass production) and there will be postage involved, so I am asking for a contribution of £10 per item, but that's a notional figure.  Any contribution (more or less, depending on what you can afford) will be acceptable (either direct to me or to my JustGiving page) in aid of: 

The National Brain Appeal

Rare Dementia Support

So, to put it simply, if you send me £10 and your name and address I will send you a calendar (indicate which one, if you have a preference)

My address is:

Richard Gibbs

75 Coleswood Road

Harpenden

Herts

AL5 1EG

and, since this is only a limited run (these are collectors' items), it will be on a first come first served basis.

So don't fear if you hear

A foreign sound in your ear

It's alright, Ma, I'm only sighing

Bob Dylan

It's all right, Ma (I'm only bleeding)

Thanks

Richard and Amanda

The National Brain Appeal raises funds for Queen Square

We help to provide much-needed funds to support The National Hospital for Neurology and Neurosurgery and the UCL Queen Square Institute of Neurology – together known as Queen Square. This is one of the world’s leading centres for the diagnosis, treatment and care of patients with neurological and neuromuscular conditions. These include stroke, multiple sclerosis, brain cancer, epilepsy, Parkinson’s disease, and dementia.

You can help Richard GIBBS raise money for this great cause by donating directly to their fundraising page - https://www.justgiving.com/Richard-GIBBS13?utm_source=Sharethis&utm_medium=fundraisingpage&utm_content=Richard-GIBBS13&utm_campaign=pfp-email&utm_term=YMN76m3aw.

JustGiving sends your donation straight to The National Brain Appeal so that they can put your generosity to good use!

Thank you for your support! 

Richard

The National Brain Appeal

Box 123

Queen Square

London

WC1N 3BG

020 3448 4724

info@nationalbrainappeal.org