Recent content by This is me

As my arms are getting weaker, I’m noticing that my Right shoulder and deltoid are getting fatigued when pushing the joystick (picture attached). My contact at Numotion suggested a joystick that’s more sensitive. When the tech came out to install it, it’s a joystick is on the right and the...

ALS is diagnosed by ruling out other diseases. Not sure what markers they are looking for.

You really got the run around. ALS can start anywhere. Mine started in my left leg. Unfortunately, most clinical trials require symptom onset <24-36 months. I was originally told PMA, but that it usually turns into ALS. Some doctors call it lower motor neuron ALS. Prognosis is the same...

We just returned from a five week trip. Croatia, Ireland, Maine and Niagara falls. Before we left, I was pretty independent with my cares but wheelchair dependent. I didn't have my normal equipment, and required more assistance. I have a smaller vent, Vevo 45 and we received a lighter...

We need volunteers for Mt Elbert this weekend. The Lockwood Foundation is going to take me up the mountain in a special chair.

I don't have Bulbar, but I do clear my throat a lot. It actually feels like it's more in my chest. My pulmonologist thinks it is due to sinus drainage. I don't agree with him. I have a lot of reflux, despite taking omeprazole. I also notice less coughing after meals if I sit more upright, in...

Hi Steve. I am a little frightened after reading this, and I haven't even read the whole story yet. BTW, I used to live in Eagle, in Denver now. I am an RN and worked at the Shaw Cancer center and the Eagle County jail. We are planning a road trip this in August. Hope to learn some tips...

Isn't it frustrating? They make someone who is disabled drive to a clinic 10 days a month. Mine is about 3 hours of my day also. Is your infusion center open on weekends and holidays?

We call it Medical Aid in Dying or Death with Dignity

I feel you are very unsympathetic. There have been people diagnosed prior to functional decline. I have slow progressing ALS, and I ignored my symptoms for 3 years after I was told the Brain MRI was normal. I also know many people with ALS who took years to get diagnosed because the doctors...

I think you should get a second opinion from another doctor if you haven't already. I have had doctors tell me in the past that my symptoms were nothing. My endocrinologist told me to see a psychiatrist when I told her my thyroid was off. She said labs were normal. I ended up having nodules on...

I am new to the board. I was diagnosed, after many many tests. With MND. I was told it is not ALS. Your symptoms sound similar to mine, but were progressing slowly over 3 years, but now it is getting worse every week. It started with difficulty hiking uphill, then progressed to difficulty when...