Morning all. I'm new here but I've been dealing with a long period of testing where I've seen more machines and EMG needles than I knew existed. Umpteen normal tests and two sets of genetic tests and I'm now looking down the barrel of my final diagnosis on Tuesday.
I'm pretty sure where I stand as everything fits latest Bulbar Onset MND / ALS diagnosis by general neuro. Symptoms have been clear on voice since August 2020.
MNDA have been great so far. Palliative care and SALT all in place. More doctors than I can remember, and I've had epilepsy for 30 years.
I even have a plan of what I need to do, sort of.
Then I remember I have three teenage daughters and go to pieces. How does one grieve for a future one will never see? (rhet)
I'll focus on Tuesday and how I'll manage to speak at 4pm.🤐 Just thought I'd say hello and hope you and your families feel today is a good day.🙏
I'm pretty sure where I stand as everything fits latest Bulbar Onset MND / ALS diagnosis by general neuro. Symptoms have been clear on voice since August 2020.
MNDA have been great so far. Palliative care and SALT all in place. More doctors than I can remember, and I've had epilepsy for 30 years.
I even have a plan of what I need to do, sort of.
Then I remember I have three teenage daughters and go to pieces. How does one grieve for a future one will never see? (rhet)
I'll focus on Tuesday and how I'll manage to speak at 4pm.🤐 Just thought I'd say hello and hope you and your families feel today is a good day.🙏
Comment