it's going so fast

[jhv]

My partner just got his official diagnosis last Monday. Our second opinion and the probable switch to Columbia's (i'm in new york) ALS center is in two weeks. But just in these past few weeks when ALS was presented as a possiblity he's hitting every symptom and its coming fast. How likely is a plateau? I've read enough to know no one is the same, but I just can't believe how fast its happening. His left arm is incredibly atrophied and his right is following suit. His chin, legs, and lower back were the regions determined by the EMG to exhibit nerve damage for the diagnosis. His legs seem fine, but his chin is twitching in his sleep. and he's hacking like crazy. I guess some of these questions will be answered when we decide on the ALS center we'll be involved with, but does it sound very fast to you?

We've started to make a lot of travel plans (colorado to ski, a friend is going to take him all over souteast asia in december, and we're going to puerto rico in January). will we be able to do these things? I know skiing might be a long shot, but he loves it so much.

thanks in advance for any advice

 

[Al]

Hi jhv. Sorry you are here. Try to do as much as you can while he still can. You can still do the things you want but there is the possibility that you may have to adapt some things. He may plateau and be fine for a few months or longer but if he doesn't you may have to look at the wheelchair option for travelling.
Some places are quite wheelchair friendly but some aren't. You'll have to do some homework before going anywhere and be flexible if the hardships are too much to bother with.
A good travel agent can be a godsend trying to find out what is available and what is aceptable
You don't want to get somewhere and find you have to carry the chair and all up stairs to get into a hotel
You said he got a diagnosis recently but how long has he had symptoms?
When you get to the ALS Center they may be able to help with the coughing. They hopefully be able to give you more answers. Good Luck.
Al.