Persons with Dementia Share Stories of Their Pre-Diagnosis Symptoms

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Several persons diagnosed with early-onset dementia recount their stories of first noticing their symptoms in a recently published oral history of their early dementia.

In a recent Being Patient article, individuals with varying dementia types shared moments of when they first knew something was amiss, including John Wood, an art educator living with FTD.

โ€œBefore 2014, at work where I was teaching at the Detroit School of Arts, I would get lost in the building. I would forget where I was supposed to be next. I tried to compensate for it with notes,โ€ Wood said in the article. โ€œI would forget where I was supposed to be next. I tried to compensate for it with notes. I had a clipboard with my schedule on it. When you have trouble remembering, even those things donโ€™t really help.โ€

Kathy Collins, who was diagnosed with early-onset dementia at age 57, said she didnโ€™t understand what was happening to her when her symptoms emerged.

โ€œI would cry quite frequently and be, you know, a cry baby, I guess. Lots of anxiety โ€” tons of anxiety,โ€ she said.

Don Kent, who has Lewy body dementia, shared that his family noticed his change in behavior before he realized something was going on.

โ€œI didnโ€™t notice it so much as my wife and my son noticed it, and they said, โ€˜Whatโ€™s wrong with Dad?โ€™ Iโ€™ve always been a sort of laid-back person, very slow to anger and relatively cool under pressure,โ€ Kent recalled. โ€œI was a trial lawyer, so in a courtroom you have to remain that way. And all of a sudden, I had this sort of explosive personality, very angry, saying mean things to people which I had never done before.โ€

Read the full Being Patient article here.

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