Ian Black, a former editor and reporter for The Guardian, recently wrote an article for the newspaper sharing his experiences getting a diagnosis for and living with primary progressive aphasia (PPA) and corticobasal syndrome (CBS). Black was joined by his wife, Helen Harris, who shared her experiences as a care partner.  

Black started noticing difficulties with speaking in the summer of 2020 while he was in the middle of an interview for a TV channel, speaking on international affairs. Black felt “lost for words;” his responses were slower than usual, and he felt as if he couldn’t answer questions with enough detail.  

Black initially experienced some hesitancy over contacting his healthcare provider, but eventually went to them for help.  

“’You sound fine to me,’ he told me during our phone consultation,” Black wrote. “Despite his reluctance, I insisted a few days later on being referred to a specialist at a nearby London hospital.” 

Because of the burden on the UK’s National Healthcare System (NHS) during the pandemic, Black couldn’t see a specialist until February 2021, and was initially diagnosed with mild cognitive impairment (MCI). After receiving an MRI, he was told that his brain experienced “normal” deterioration for his age. In August, when Black went to a renowned neurological research center to receive new scans and a second opinion, a neurologist diagnosed him with FTD and PPA.  

“Helen was aware of all this, of course; our daughters and my son less so. But close friends didn’t notice my speaking difficulties for several months,” Black wrote. “Nevertheless, I told them what was going on, as I was getting increasingly anxious to explain myself. I talked a lot less than before as I was scared of sounding inarticulate. I was also, obviously, worried about how this strange illness might progress.” 

Black also experienced difficulties with balance; an avid runner, he falling more frequently. In time, he began to have difficulties moving the right side of his body, which made walking and writing difficult.  

“In late February this year, my NHS consultant Prof. Paresh Malhotra, a well-known researcher, told me that I also had features of [CBS], in which parts of the brain begin to atrophy or shrink. CBS is an even rarer condition that can be part of the set of problems making up [FTD],” Black wrote.  

As his symptoms progressed, Black found himself increasingly unable to continue many aspects of his career, such as interviews or public speaking events. While taking part in therapies to help manage symptoms, both Black and Harris have said that they put greater emphasis on enjoying life.  

“It is hard to explain how this can be so, but the good times now seem better than they were before: the happiness is more intense – and Venice on our last trip was more beautiful than ever,” Harris wrote.  

For Harris, the journey has been long and emotionally draining. There was an initial period of denial and a belief that perhaps Black had become depressed due to lockdowns, and not being able to travel the world as he previously did.  

“After an initial period of blind terror – I had (correctly) identified Ian’s illness on Google months before his formal diagnosis – I discovered a tough, no-nonsense side of me,” Harris wrote.  

CBS is an FTD disorder that primarily affects movement; Learn more by reading this fact flyer. There are three primary types of PPA that each affect different aspects of language and communication; learn more by reading these fact flyers for the nonfluent/agrammatic, semantic, and logopenic variants of PPA.