HOUSTON - A prominent lawyer from Houston is thriving, even though he was diagnosed with Alzheimer's disease years ago! He found a doctor who helped him stop the progression of the disease through clinical trials at UTHealth Houston.
Rolfe Johnson and his wife Carol sure are relieved they found help. He has a lot to live for. He's been married 61-years, he's an accomplished musician, who went on to be in the same quartet as Kenny Rogers in the late 50s. He also led a successful law practice for years.
Rolfe explains his first warning signs that something wasn't right.
"When I would contact clients and have a conversation with them and they say well, Rolfe, you called me about that yesterday and I repeated things like that around the office, I always covered myself by saying well, I just wanted to make sure. I'm a Harvard lawyer, so I've got lots of tricks," laughs Rolfe.
The Johnsons were referred to Dr. Paul E. Schulz, a neurologist with UTHealth Houston and Memorial Hermann, who diagnosed him with Alzheimer's disease. That's when Rolfe quit his job, but not his passion for living life to the fullest. He has been working with Dr. Schulz for more than five years to fight the stages of Alzheimer's.
"There are a few years of amyloid plaques, and then a few years of tau deposition in the brain and then inflammation and then that leads to symptoms and cell death and with this kind gentleman and his wife, we've tackled all three of those elements. He was in one study of anti-inflammation, and then a study of anti-tau and now he's getting the anti-amyloid antibody," explains Dr. Schulz.
Rolfe was the first in Texas to undergo the newly FDA-approved medication called Aduhelm when it was released in June.
"What it does, it stops the progression by removing the amyloid protein," explains Carol.
"It doesn't cure what has already developed, but it keeps it from getting any worse," states Rolfe.
His neurologist is more hopeful than ever.
"I've been doing this since the 70s and this is a really great time I feel to actually have hope, because we are seeing positive outcomes. I feel like now is the time where we're looking for better mousetraps, so-to-speak, so we're adjusting things and so forth, but it's a really hopeful time for a long time," says Dr. Schulz.
All of Rolfe's treatments have brought them hope. The first one involved a plasma transfer study.
"It was kind of like dialysis, they take your blood and take the plasma out that has the amyloid in it that is mixing up the brain and then put in fresh plasma that has no amyloid in it. He had that once a month for about a year and a half. Then he moved into infusions of immunotherapy," says Carol.
"Immunotherapy that takes out the tau protein, so it was each of those, I think, that had some positive outcome for me," says Rolfe.
All of it has helped Rolfe continue to live life as he wants. He even went snow-skiing recently and still directs his church's music program.
The Johnsons can't even fathom where Rolfe would be today without all of these treatments.
"Dr. Schulz called Rolfe in about six months ago and showed him his MRI from 2015 and his MRI from six months ago. It said they are the same! It's just unheard of! Friends whose parents were diagnosed about the time Rolfe was, have gone the whole course and died, and so we are so incredibly grateful for these treatments. As far as we're concerned, except for the short-term memory, at 82, this is a cure for us. We can live with this," Carol says smiling.
"With the treatment Mr. Johnson is on, by the end of the year, 40% of people do not have detectable amyloid on their head imaging, so I mean, it's a huge deal. It's really taking that stuff out of the brain," says Dr. Schulz.
Rolfe was adopted and just found out recently who his birth parents are. Unfortunately, it was too late to meet them, as he found out they both died from Alzheimer's. He's happy to connect with the other family members though and they're all relieved to know he has a different outcome.
The Johnsons have relied on their faith to get them through this fight of their lives. It’s important to get an early diagnosis of Alzheimer’s and not ignore the warning signs, to start treatment quickly, and try to stop the progression of the disease.