So, I am guessing he doesn't want to fully accept his original diagnosis?
My husband had a complete burn out on dealing with his diabetes, so I am guessing that your partner is feeling a similar way.

Yes. the stupid appointments are exhausting. We just did a two day hand surgery procedure and it was an hour driving each way at rush hour, two days in a row. And the waiting....and when I don't take him, I was taking Mom...luckily, everything is slowed down a bit now...and I am doing MY OWN appointments...catching up.

This is the only place I have to vent. I don't want anyone to think less of me...or my husband by talking to just about anyone else. I did mention something to my mom once, a couple of weeks ago, and she teased my husband. Not good. by her, or by me. lesson learned.
vent away. At least you know that here, we understand.

Can you have Community Health visit to assess him once every week or two.... His doctor can order it in??

I'm not sure if it's covered where you are... It is hear... That way he can be assessed by a nurse and she/he can assess his complaints ... and also offer you some support....xo

I had a pt with ALS he did exactly this! He even put some surgical pump for the spasms certain he had to lost any muscle mass from ALS and once the pump was in he could function more normal. He didnt. Its such a hard disease process. I imagine accepting it would be hard:(

I have MS and fully understand how using my limbs causes them to become useless. Mine recover, his keep progressing. I do think you should disagree with his refusing to accept his diagnosis. It is harder to keep avoiding than dealing with it. It's terrible, hard, ugly, unfair and sad to have a terminal illness. Creating new ones that aren't quite as bad won't change it. If you are going to take him to a dr , make it to a grief counselor, or someone who can help him. Nothing about his illness is going to be hard. I'm so sorry you both have to deal with this.