Recent content by CJV

You do qualify for Medicare, maybe you’re thinking Medicaid. If you have an ALS diagnosis, no matter what age, you qualify.

Has anyone read that postponing oral Radicava is worth being in the trial? I’m currently being considered for trial.

My first post as a PALS. 5 months in, navigating the crap. My son for Mother’s Day got us a mother/son Viking cruise to Vienna. I was a musician my whole life and I’m watching my voice go and my piano ability go as my arms go first with this insidious disease. He decided to check off a bucket...

I lived it, too. And now I’m diagnosed myself. It’s cruel, and you have every right to be freaking pissed off. I know what you’re feeling, my husband was 49. My heart is with you.

….since diagnosis. The weeks have been filled with telling everyone, from friends, to neighbors, to accountants, contractors and everyone in between. Filled the weeks with paving way for bathroom remodel to accommodate me, going to first clinic, therapists, voice banking and even squished a...

My husband was diagnosed December 3, 2009 and passed January 2011. It was mercifully fast.

….I got the devastating news that I have ALS. This is particularly cruel since my husband died of ALS/FTD. I’m reeling.

Appointments following after tap results

Update from Penn Medicine. Follow up EMG and I’m devastated.