Reporter: Michael Usher
Producer: Jo Townsend

They call it “the long goodbye” and it’s the most heartbreaking journey imaginable.

Alzheimer’s robs its victims of their memory and their dignity, erasing their personalities until all that is left is the shell of their bodies.

About 1300 Australians are diagnosed with Alzheimer’s every week, making it more common than cancer or even heart disease.

And for those who get the news, it’s as good as a death sentence.

Until now.

Michael Usher visited a revolutionary clinic that’s offering real hope to sufferers and their families.

The doctors there believe Alzheimer’s disease can be reversed and they have the results to prove it.

Story contacts:

For more information about Dr. Tobinick’s US clinic, visit:
www.nrimed.com
www.strokebreakthrough.com
Or email:
nrimed@gmail.com

For more information about Etanercept studies in Australia, visit:
www.griffith.edu.au
Or email:
alzheimers-trial@griffith.edu.au

Full transcript:

MICHAEL USHER: With this one simple injection, 63-year-old Charlie Giles is about to be reborn. He’ll have to endure a disconcerting five minutes with his head pointed at the floor – but it’s worth it. Because this unconventional procedure is changing the lives of Alzheimer’s patients.

NURSE: What city are you in?

MICHAEL USHER: For Charlie, a transformation from this…

CHARLIE: I don’t know.

MICHAEL USHER: …To this.

CHARLIE: I’m back. You know, I can do things and talk to them and not mope around. It’s great. It’s like a miracle, is what it is.

MICHAEL USHER: And it’s all thanks to one pioneering doctor, Ed Tobinick, who just wouldn’t listen to the sceptics. Is it a cure?

ED: It clearly has a marvelous, immediate and prolonged effect as it feels – really truly does feel – like a miracle.

MICHAEL USHER: This tiny vial of medicine is changing the lives of some dementia sufferers. It’s called perispinal etanercept, an anti-inflammatory drug that was designed to treat rheumatoid arthritis. Now, it targets a protein called TNF – we all have it – but it’s 25 times higher in patients with Alzheimer’s. Dr Tobinick discovered that this, just a few ‘mls’ of it, can shrink excessive levels of that protein in the brain. And his patients say it’s like a fog clearing from their mind. But as you’ll see, hundreds of thousands of Australian sufferers are so far being denied this incredible mind-restoring treatment. Pat, if Richard could have continued on with the injections do you think you’d still have him today?

PAT: Oh definitely. Definitely. Yeah. Yeah. Yes.

MICHAEL USHER: Instead of a comfortable retirement, for the past two years Charlie Giles has been slipping into twilight. How do you describe what’s happening in your mind? What’s happening now?

CHARLIE: It’s just blank. It’s when you want to say something, you can’t. It’s scary, you know…

MICHAEL USHER: Alzheimer’s is stealing his ability to communicate and it’s simply heartbreaking for his wife Cheryl to watch. It’s hard isn’t it, Cheryl?

CHERYL: Yeah, it’s hard just watching him struggle sometimes. It frustrates him sometimes when he’s trying hard to say the thing and it just isn’t there.

MICHAEL USHER: For 20 years, Charlie was a highly skilled machinist in a laboratory that made space telescopes. But even recalling that career now is almost impossible. What was your profession, what did you used to do?

CHARLIE: A machinist. I made things to go in, I forget what I made!

MICHAEL USHER: And instead of his daughters and grandchildren, he now sees strangers. Charlie’s tried most of the mainstream dementia drugs, but none have helped. So today, Charlie and Cheryl are visiting the Dr Tobinick’s Institute of Neurological Research in California. First, Charlie is given a memory test commonly used to determine levels of dementia.

NURSE: Can you tell me who is the US president?

CHARLIE: No…

NURSE: OK. And I want you to tell me as many words that start with the letter ‘p’ in one minute.

CHARLIE: Plate…I don’t know.

MICHAEL USHER: It all confirms what Cheryl knows deep in her heart – that Charlie is rapidly deteriorating.

NURSE: And what is the current year?

CHARLIE: Uh…

MICHAEL USHER: His kind of dementia is called ‘primary progressive aphasia’, which has scrambled his mind. Words are hard to find, let alone use in conversation. Dr Tobinick’s injection is Charlie and Cheryl’s last hope.

ED: So, we’re going to do the injection now. We’re ready. We’re ready to do that. You ready, Charlie?

CHARLIE: Yep.

MICHAEL USHER: Using a drug approved for arthritis but never before for Alzheimer’s is raising a lot of eyebrows in the medical and pharmaceutical community. Here’s how the procedure works: Dr Tobinick injects the medicine straight into the back of the neck, penetrating the rich blood system surrounding the spine, but not the spinal cord itself. Once it’s in, the patient is tilted upside down, head first, to let the drug drain through those blood vessels travelling directly into the fluid around the brain. The medicine temporarily kills that excessive protein, and reduces inflammation.

ED: Patients have a greater clarity of thought. They have improved attention, they have the improved ability to concentrate. It really is exactly like coming out of a fog.

NURSE: We’re going to turn back over, OK?

MICHAEL USHER: Minutes after his injection, Charlie sits upright and immediately, he feels the change.

ED: What do you feel is different?

CHARLIE: I don’t know. It’s clearer or something.

MICHAEL USHER: On successful patients, the drug appears to work quickly. Shortly after the injection, Dr Tobinick again quizzes Charlie.

ED: Charlie, who is the President of the United States?

CHARLIE: Obama.

ED: Yes. Very good.

MICHAEL USHER: The full effects will take time, but the fog is certainly lifting. The next day, we see even more changes in Charlie.

CHERYL: How do you think it went yesterday?

CHARLIE: Yeah, it went good. It went good, but I want more! Haha.

MICHAEL USHER: Remember, this was Charlie’s memory before…What was your profession, what did you used to do?

CHARLIE: I made things to go in, I forget what I made!

MICHAEL USHER: What did you do for a job?

CHARLIE: I worked at Livermore Lab and I built things. I did work on the Hubble and…

MICHAEL USHER: The Hubble telescope?

CHARLIE: Yeah, for fixing it. Yeah, that’s what it was. A long time ago. Cheryl, how remarkable is this? This flow of conversation is just wonderful.

CHERYL: I know, I’ve been smiling all morning at it. Every time he would open his mouth and talk about anything to me.

MICHAEL USHER: Do you feel like you’ve got a lot of your old husband back?

CHERYL: Yes, a lot happened yesterday and I’m looking forward to even more.

MICHAEL USHER: Fast forward another month – and three injections later – and have a listen to Charlie.

CHARLIE: It’s like a miracle, is what it is. It’s great to be able to talk.

MICHAEL USHER: Dr Tobinick says Charlie’s cognitive skills have improved 30% – an improvement the clinic claims is common for its 100 or so Alzheimer’s patients. But here at home, authorities don’t recognise those amazing results and that’s a tragedy for Australian sufferers.

PAT: He didn’t know his children. Some of his relatives would come to visit him and he’d talk to them and they’d talk to him and then they’d leave and then he’d go to me and say, “They were nice people. Who were they?”

MICHAEL USHER: As Pat Leahy watched her husband Richard rapidly descend into advanced Alzheimer’s, her Melbourne doctors offered no hope. But Pat’s a determined lady and when she heard of Dr Tobinick’s treatment, the couple set out for LA hoping for a miracle.

PAT: Well, you get desperate and I mean, he’d really been a good husband to me. I’ll be right in a minute. This keeps happening all the time.

MICHAEL USHER: Richard became the clinic’s first Australian patient. And after just one injection, the change was overwhelming.

PAT: Instantly I had my husband back.

MICHAEL USHER: It was as quick as that?

PAT: It was a great feeling. I cried my eyes out, but it was good.

RICHARD: I can’t tell you what, but I feel within myself that I’m a different person.

PAT: He just kept saying, “I feel terrific,” whereas before I don’t think he could even say the word ‘terrific.’

MICHAEL USHER: In those days following, how did you see a change in Richard?

PAT: Well, I got up one night to go to the toilet and when I came out, Richard was standing at the door and I said, “Oh did you want to go in?” and he started singing to me, “I could have danced all night” – and he took my arms and then we started dancing in the lounge room. This is like, two o’clock in the morning, so it was just wonderful.

MICHAEL USHER: But patients must have continuing regular injections and Pat and Richard couldn’t afford to stay in LA. Back home, he went downhill fast and died months later, following hip surgery. If more people could have it, if Australians could start receiving this injection, what difference do you think it would make?

PAT: It would give them back their partner to what it was before it all started. It would give them back what they wanted.

MICHAEL USHER: And there’s hope that will happen. Researchers at Queensland’s Griffith University hope to begin the first Australian trials on perispinal etanercept early next year. But Charlie Giles doesn’t need any more proof. He’s come alive and he and Cheryl are again living every day more husband and wife, than nurse and patient. You might have trouble shutting him up now.

CHERYL: Yep. But I’ll tell you what – I’ve gone a lot of years without saying that. I won’t tell him to shut up.

MICHAEL USHER: You talk as much as you want, Charlie.

CHERYL: That’s it, you’re on.

CHARLIE: Yeah.

CHERYL: I can’t kiss you with a hat on darling. Mine or yours.