I never even thought about gelbags - what a great idea! I live in Texas, where the summers are brutal, so I'll be spending the next few months in the A/C with ceiling fans on top speed.....

It does sound like you will have to make modifications to what you are used to normally doing - just listen to your body; you'll get to a point where you will know when you need to slow down. I've told everyone that I now have a doctor's note to be fat and lazy!

It's hard, though, because we don't LOOK like there is anything wrong with us. It's hard for people to understand how very tired we can get in a short amount of time, and they have no frame of reference to know how that low energy feels. However, the people who love us do try to understand - I am sure that they get frustrated at times as well.

I think you can probably tolerate SOME warm weather - just figure out what works for you. Once you have your medication levels adjusted, it will be much easier. And it is early in this diagnosis for you. You are still in shock, and you are going to go through a grieving process, which is perfectly normal. It will take a few months to get over the initial stuff, and then another year or two to completely adjust to your new "reality".

We went through the same thing when our youngest daughter was born with Down syndrome. I think that is why it was easier for me to accept this diagnosis - I knew that everything would be OK with time. Plus, I know someone in our Down syndrome support group who is younger than me (and whose kids younger than mine) who was diagnosed with ALS a couple of years ago. She isn't doing very well now, and she is in the end stages of her disease. I always have to remind myself that things could be a LOT worse....

For someone who has been very active - as it sounds like you are - this is a real adjustment to have to make. You WILL get through it, and you will find ways to still remain active; just in different ways. Allow yourself time to grieve for what you have lost, but hold tight to the knowledge that you will find other things that give you just as much joy!