Official advice after a dementia diagnosis can leave you feeling helpless. Yet, we’ve found, sharing research on preventing dementia can get ugly. Thankfully, there is a positive, third side.
(If you have no idea what I’m talking about, you can explore what’s inside my eBook Dementia: Keep Your Marbles. It covers causes, existing treatments and a wealth of verified research about preventing, delaying, even reversing dementia.)
‘We must avoid wallowing in self-pity…’
Alzheimer’s News Today offers this advice following a diagnosis of dementia: ‘We must avoid wallowing in self-pity after an Alzheimer’s diagnosis.’
The article explains that people facing an Alzheimer’s diagnosis may experience a range of emotions ranging from sadness to anger and disbelief. ‘It’s hard to tell which is more crippling,’ the author adds: ‘The diagnosis itself or the emotional toll it takes on the patient and their family. It can be easy to fall into self-pity.’ Sympathetic for sure, but helpful?
I found the book inspiring and reassuring. Thank you for holding out hope to us at a time when uncertainty seems to surround us’
Lynda O, on ‘Dementia Keep Your Marbles‘
Your doctors may add practicality to the mix with words like ‘You should get your affairs in order.’
Or, they might be more pro-active and suggest you take a supplement like Souvenaid or enroll in a dementia drug trial. Neither is much help because, as you’ll see later, both options are ineffective.
Better Health Plays A Role
Doctors, dementia support sites and neurologists all agree that better health helps you cope better with dementia and avoid injury, illness or infection, yet few seem to consider that healthier lifestyle choices could avoid or delay dementia in the first place, or even reverse it, if diagnosed early.
That is exactly what dedicated dementia researchers have found.
These researcher are not GPs or neurologists; their job is to treat patients using current protocols. The job of research neurologists – or neuroscientists – is to develop better protocols. They do this by running clinical trials with their patients, closely monitoring their results and publishing them in neurology or other medical journals.
It is this neuroscience research we share – which can be up to 17 years ahead of current protocols. We’re boomers, too, and we don’t want to wait 17 years for answers. This research is buried deep in medical journals, written in arcane medical jargon; we translate it and link back to the original papers.
Everyday Aussies would find this material hard to find and read – and most overworked doctors wouldn’t have the time to go looking for it. That’s why we share it.
‘When I told my doctor I had managed to reverse most of my dementia symptoms, he didn’t believe me, so I am thrilled that you have written this book, Kim.
Lea Nelson on ‘Dementia Keep Your Marbles‘
Why Facebook?
We chose to post on Facebook about this dementia research because boomers are the generation most affected by dementia, and more boomers are on Facebook than any other platform. We’re no fans of Tech Titans like Mark Zuckerberg, but where else could we reliably reach boomers like you?
We get thousands of responses to our posts, mostly likes, love hearts and shares which, I must say, is unexpected. We also get hundreds of comments and, each day, we spend hours replying to them.
I read the whole book last night – Wow! Honestly, I am blown away and it is so easy to read. Well done. I am recommending your book to all my friends.
Jan McC, on ‘Dementia Keep Your Marbles‘
Real Questions
Most are genuine enquiries such as ‘Does Souvenaid work?’ As we’re not the experts, we provide links to expert sources we trust.
In this case, the Cochrane Collaboration, an international network of independent health professionals, analysed the evidence and found no real difference between placebo and Souvenaid. Others concluded that, although Souvenaid contained goodies like omega-3 fatty acids, uridine monophosphate, choline, phospholipids, B vitamins and antioxidants that support memory function, there was too little of them to make a difference.
We found that people with prodromal AD who took Souvenaid daily for two years were probably no more or less likely than those taking placebo to develop dementia.
Another popular question is ‘Do the new dementia drugs work?’
There is more to this answer. There are only two drugs approved to treat the disease – not just ease symptoms – Lecanemab (branded Leqembi) & Donanemab (branded Kisunla). The research says:
- The drug‘s performance was over-estimated by more than 10-fold – because the makers quoted relative rather than absolute data. In reality, the drug makes too small an impact to notice*.
- The side effects were under-reported. A recent report says that, 45% of Lecanemab trialists had treatment-related adverse events with 1 in 4 suffering brain swelling or bleeding. With Donanemab the figures were 89% and 1 in 3, respectively.
- The full costs were under-estimated. By the time the cost of the infusions and scans to monitor these adverse events is added, the total could be over US$100,000 a year per patient*.
- The science on which both drugs is based is doubtful. The work that established the ‘Amyloid Cascade Hypothesis‘ is under question.
In short, you might need to take out a mortgage to afford drugs based on doubtful science, that don’t have a discernible benefit but might damage your brain – the very organ you’re trying to preserve. So, do the new dementia drugs work? It appears not.
The small and uncertain benefits, the worrisome and poorly understood risks, and the very high costs of treatment suggest that these drugs are promoted largely out of theoretical rather than practical benefits. For patients and society—both of whom bear the costs of this treatment—caveat emptor.
Espay et al in Neuro
*Data for Lecanemab; Donanemab was only approved by the FDA in July 2024.
Real Mistakes
We also get Facebook comments like ‘Your system doesn’t work. The eBook didn’t download’ but these would-be readers haven’t read the emails that show them how, or checked their spam boxes. Others expect the eBook to magically download as soon as they click ‘Place Order‘. Still others mis-type their email addresses or their inboxes are full, so we can’t deliver anything – including alerts to fix these.
We try what we think are correct versions of email addresses, we trawl for bounced emails and we check orders for duplicates and anomalies. We message readers on Facebook if email is blocked to us.
We try to head off issues before readers are aware of them or they can develop into problems. Amazingly, some people would rather lodge a claim of fraud against us with PayPal or Stripe, than email us to say ‘Help me with my order’ or ‘Oops, I ordered twice.’ We openly publish our email addresses and mobile numbers so anyone can reach us, anytime. Some won’t.
Really Rough
Other comments are more brutal. These are always from people who haven’t read the eBook; often they haven’t even read the description.
These people have made up their minds that nothing can be done about dementia, and anyone saying otherwise is a liar, a fraud, a scammer or all three.
Stop preying on people by giving them false hope, you dogs.
Person who hasn’t read ‘Dementia Keep Your Marbles‘
Here are some of these comments; others are unfit to publish:
‘This is a sh*tty scam. You can’t reverse dementia.‘
‘You should be reported for telling lies and banned from Facebook.’
‘Where are your credentials, you scammers?‘
‘What bl**dy rubbish. Dementia is a tide going out that you can’t stop‘.
We try to reason with these people, pointing out that we’re information not medical researchers.
We’re not giving our opinions but those of experts who are qualified to give them. We’re not offering some home-baked, snake-oil remedy, but sharing research that is published in respected journals, if these people knew where to look or had time to read it.
Sometimes this approach works – these people stop posting – but mostly it doesn’t. One woman goes to the trouble of re-posting the same comment every week. It’s one of the above.
This daily onslaught of insults and accusations is bruising and soul-destroying. On some days, it’s enough to make us want to walk away from Muscles & Marbles and go back into retirement.
We’re The Grateful Ones
But then there is the good side, the positive side – the grateful emails, the excited phone calls, the enthusiastic eBook reviews and the uplifting Facebook comments – from people who have read the eBook. This is our ‘go-to’ place when, day after day, the negativity starts to grind us down. With over 80 reviews at the time of writing, we’re grateful beyond words.
Thank you so much for this guide. With every page I read, I felt more and more relieved.
Megan F on ‘Dementia Keep Your Marbles‘
‘Kim, you’ve changed my life,’ is how Brigid M began in her soft Irish brogue when she called me one Saturday morning. Tears formed in my eyes as I tried to think of a fitting answer, mumbling something trite like ‘we just shared the research; you changed your life.’
Others talk about how positive our message is or how it empowered them. This is so thrilling to hear.
‘Now I feel I don’t have to wait for a Dementia drug. I feel empowered’ said Connie V.
Many told us the research we cite validated their experience, some personal, some professional.
‘My mum was being treated for dementia but, nine days after stopping her meds (her end of life wishes), she remembered me for the first time in 4 years and lived another few months with her mind working…’ Donna C told us.
‘I am so glad this so well researched book is available. I highly recommend it to every person young or old, so these lifestyle factors can be applied to decrease the incidence of dementia in our community’ said Isabel Baker, Author of ‘A to Z of Dementia Care’.
A few commented on our choice of Facebook and why they don’t trust it.
(By the way, we would love to find a better way to tell Aussie boomers about how they can fight dementia. It would be fantastic if someone could start a secure, trusted network for tech-suspicious boomers like these readers, like us and maybe like you. Please let us know if you have any ideas.)
‘When I saw this on FB, I thought it was just another money grab but I’m so glad I read on. It’s inspired me to do to all I can to avoid dementia or delay it for as long as I can. Thank you!’ said Donna C.
‘I didn’t want to buy via Facebook (have you seen ‘Titans of Tech’). I messaged Tracey and she sent me a link to their website so I could check them out and buy without Facebook. The book is even more impressive’ Kathy S told us.
We were thrilled that so many readers liked the style, format and length.
‘This eBook is astonishingly well researched and referenced. To get all this useful info in a small readable package with direct links to sources, is priceless.’ Julie S told us.
‘I was surprised that I hadn’t read anything like it anywhere else. I’m also grateful for how you squeezed so much material into such a compact package and still made it easy to read.’ said Julianne T.
Have already read half of the book and am amazed at the content. Some real eye openers in there. Can’t wait to get through the rest.
Colin T, on ‘Dementia: Keep Your Marbles’
Why Us? It’s Personal
I created Muscles & Marbles to be a safe, reliable place to discover the latest research into preventing chronic disease and leading a strong, vital, disease-free life.
For me it’s personal. My late first wife suffered and died from a chronic disease and, back then, I couldn’t do much to help. These days, with 30 years’ information research behind me, I can do so much more. I can find, I can translate and I can disseminate this research. That’s why I started M&M but I couldn’t do it alone. I had to more than twist Tracey’s arm to join me; she had no desire to go back to work!
Disease-prevention research is ongoing and, every day, we find more and more empowering stuff. That’s why we’re continuously updating our eBooks and why we chose a format that allows you to access the always-updated version.
We know that some readers are less tech-savvy and would prefer our books in hard copy. As we’d like every boomer to be able to access this research, we checked out the options. The only one which enabled ‘print on demand’ and post to Australia was Amazon, another Tech Titan. Apart from enriching space-jetting billionaire Jeff Bezos, this approach would have tripled the cost to readers.
To help these readers, we chose clever software from a small European developer called Real3D FlipBook. It has a ‘print your own’ option as well as a ‘read online’ option with virtual ‘flipping pages’ and a ‘download’ option. The eBook is only 107 pages long, so even printing is easy. We’ve been surprised by how many readers choose and recommend this.
Not Giving Up
In short, despite the technical challenges and the abuse, we will keep going.
Readers tell us that sharing this vital research is just too important; we can’t take the easy way out and give up. That would leave you with the well-meaning platitudes of dementia support sites, with doctors tied to existing protocols and too short of time to dig for the latest research or with the negativity of the sceptics and trolls.
Theirs is a world of well-meaning kind words or ill-informed insults; neither is of much practical use against dementia. The truth is, the facts about fighting dementia are the opposite – inspiring and practical – and we’d like everyone to have the chance to know about them.
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You might care to explore what’s inside Dementia: Keep your Marbles below.
DEMENTIA:
KEEP YOUR MARBLES
How you can prevent, delay, even reverse Alzheimer’s Disease
