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Someone dear to me passed away today from ovarian cancer. I will miss her when I travel that way next week. If you are a reading type, I highly recommend the story of Mayada called: Mayada, the daughter of Iraq. In a nutshell, despite the title, it's a true, raw, and fascinating story of never...

Hi all, I don't go back to the neuro until my next scheduled visit in December. I was told to get in contact sooner if I experience any worsening breathing or swallowing issues. Breathing I feel has decline some, particularly when eating, but not remarkably and not enough to warrant an earlier...

Sorry for the absence of late. Just been trying to process. I returned to my neuro at the ALS clinic earlier last week. PMA it is definitely not. In fact, he feels it is upper motor neuron dominant-ALS but won't make a final diagnosis just yet. He brought up Riluzole and said we could wait a...

Has anyone here felt that their hips have become instable? When I walk, it can actually feel what seems like a shift in hips. Sometimes, I have a sense that my right hip is going to pop out? I'm assuming it is because of how weak my hip flexors are. Or perhaps because my lower paraspinals are...

So back in early June, I developed some sort of dry cough. It would come on suddenly with a tickly feeling in my throat. The end result would be minutes upon minutes of coughing. Followed by a relief for an hour or so. The same cough wakes me up at night. Mid-June I got a pneumonia. At the...

I forgot to ask if anyone was put through a memory exam at their clinic visit. Seems I failed two parts. I couldn't recall five words after one minute. And then I struggled to come up with words that began with S in an allocated time. Sheesh. This 47 year old has the memory of an old gal...

I had my appointment with Sunnybrook's ALS clinic yesterday. They rang late the prior day, so I had to get up at 5 a.m. the next morning to make it there in time. Anyway, the end result is that the doctor feels that PMA is the most plausible diagnosis. He won't commit fully until he does his...

Hey everyone, let's have some fun. When I burn out, which is happening too often of late, I have too much time to think. And when I think too much, I get depressed. Needless to say, I need to change things up a bit. So the idea of this thread is for everyone to say one good thing that has...

I have a claw right hand. Thumb is going. Extensor is shot but flexor is still relatively reliable. Yet, every so often -- and ironically this started at least two years prior to any outward symptoms -- my brain and hand disconnect. So whatever, I'm holding just drops to the floor. No warning...

Hi everyone, I'm curious if anyone has ever used one of those lower back support belts. On an MRI a few months ago, it showed that all my lower spinal muscles were infiltrated by fat as a result of denervation. So rather than looking like a nicely marbled ribeye steak, mine look like pure...