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It's been almost 4 weeks since I said good-bye to my Joe. He was our sun, the constant in the family who we all gathered around. The one who was steady and composed, a big kid who found fun in little things. That's how he faced his journey. He kept an even keel while I ranted at the enemy...

That’s great news!

I read your post and heard myself and the conversation with my kids (all adults) last night after my meltdown. My Joe was diagnosed in March and now his speech is almost impossible to understand, he has lost almost all movement of his hands, and can barely transfer from the chair to commode...

Thanks Nikki. Beautiful!

The past few days have been (insert appropriate word here that I’m not sure of) wednesday my PALS went for his feeding tube. He’s not a complainer and has a high pain threshold but does get anxious before anything like this. Because of the ALS they told him no anesthesia and explained the...

Dr. Harms did talk about banking his blood and also having Joe sign a release that would allow Columbia to disclose any future information to family members. I have that on my "down the road" list but may just send an email so I know what needs to be done. Thanks for the reminder. I do...

Early May I posted feeling overwhelmed and several of you kindly responded and helped me calm. This is a belated thank you and I figured I’d just let you know where we are now. Today my PALS turns 54. The same age his mother was when her ALS journey ended. It’s hard not to think about that...

Thank you both for your responses. There's so much to think of to make sure he's as comfortable as I can make him. The RWJ clinic diagnosed Joe and suggested Columbia, I think largely because of his mother's ALS. Testing was done for 6 mutations/markers (I don't yet fully understand the...

Three months ago my husband was packing for a 3-week business trip in India. He had been complaining of shoulder aches and pain for about 6 months or so that the doctor thought might be the mattress or pillow and had been battling fatigue that was attributed to work stress and very very low...

Your clear explanation of markers and FALS is great, this can be a bit overwhelming! This doctor was through the Rutgers medical school, while we really like her and she comes recommended a second opinion seems worthwhile. I'll take your advice and reach out to Columbia and Temple next week...