Have you got Primary Progressive Apraxia of Speech? Let's connect

My wife has agraphia too. Most of the time her writing is not legible. Of all things, shw wants to watch football. She has never wanted to do that. She will watch it for hours.

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Hello!!
The PPAOS support group is meeting tomorrow at 4!
I hope you make it!
I'll meet you there!
Kathie in Massachusetts

I am a 69 year old woman from MA. My speech has gradually grown worse over three years to the point that it’s usually impossible to understand and a huge effort to produce. It is a very long story, ranging from “sounds like TMI”to currently a working diagnosis of Apraxia of speech. Previous working diagnosis was oral-lingual dystonia. Over three years, I have done PT, voice therapy, speech therapy, 15 months of Botox, complete neuro work-ups, Cat scans, MRIs, EMG, PET SCAN, Movement disorders blood panel, with no answers. The Botox was with the head of a speech disorders clinic, an ENT surgeon. I’m now seeing a speech pathologist, but I sense she is encouraging me to use the Bestie app and seek further tech assistance. In my testing thus far, there is “no evidence of a neurodegenerative process, “ nor of dementia of any kind. My symptoms seem contained to my speech, as well as mouth, lips, tongue. I have some difficulty with liquids and pills, but so far, am okay eating solids. I have facial droop on the more affected side, and can not quite smile. Providers seem unanimous that I did not have a stroke. Three years ago, I started having moments of being unable to pronounce certain words correctly, such as long words or those with blends. During that time, I was having some very mild symptoms -dark under eye circles and dark, foamy urine. A month or two later, while away with my husband, I developed daily fevers, severe muscle pain in my chest and thighs, and fatigue, plus an evening of double vision that resolved the next day. My husband says I suddenly displayed voice and speech differences and a strange affect one morning. The fevers, fatigue, muscle pain, etc., lasted months, leading to many appointments, tests, scans, etc. , but no answers. Once the “mystery” symptoms gradually subsided, the speech issue continued to worsen. My anxiety is on two levels: the frustration of being unable to talk which affects every aspect of life, and the fear of the unknown. Sorry for the lengthy vent. I haven’t found anyone else with this problem to communicate with.

I’m sorry to hear what you’re going through.

Have gone another clinic ?

I have been/am being seen at Mass Eye & Ear, Mass General Hospital, and Brigham Neurology, all in Boston.