New on this Trip

[ValleyMomma]

Husband was just diagnosed although we had suspected it for about a year. His side of the family carries the SOD1 gene and diagnosis was very easy for him. Doctor did an EMG and that was it. His Mom just passed away from it and we have lost a cousin and an Aunt to ALS. I'm not thinking about what this means for my kids at this point. Have to take it day by day with my husband.

Right now he has big trouble walking that is made worse by a fair amount of swelling in both knees. We are told this is not abnormal as the nerves die.

Day by day right now. He still works and we are assuming it's not going to progress super fast. None of the other family members have passed under 5yrs. So, we are hoping for the best! He is also doing lots of physio and we are actually seeing some improvements, although I know this will not last. But, clearly the physio is helping and it certainly helps his mood as it feels good to be able to do something to help.

Look forward to reading about everybody here.. So many ads though, it's hard to tell where to click sometimes.

 

[ottawa girl]

Welcome - and sorry you have to be here.

There's lots of reliable information, support and cheer here!

Be sure you check in with the new FALS sub forum which is being developed for familial ALS members.

 

[AfraidButNotAlone]

Here's praying it will be a LONG trip

 

[Cricket]

Hey ValleyMomma,
Welcome. Taking things one day at a time sounds like a good plan. Wishing you the best. Cheers

 

[zoohouse]

Welcome! This will be a tough one for you, and it will take a few months to get into the groove. The only problem is that the groove keeps changing, but as a parent of a child with autism you probably have learned to think on your feet. Bless You.

 

[amyezar]

I'm newly diagnosed too. It's nice to talk to people who know exactly what you are thinking and feeling, it's indescribable.

 

[Isaiah535]

I know what you are feeling right now. I felt like Everything was spinning and like i might drown in all the facts and information and the lack of answers and hope the doctors have to offer. You are not alone. The voices out there do get quieter if you choose to focus on the positive instead. Enjoy each moment and everyday you have together. I encourage you to look into naturopathic doctors and natural suppliments. There is hope. But the thing that has given me the most hope is my faith in God. I pray you have ths same hope.

 

[affected]

welcome, none of us want to join this place, and yet none of us want to try and survive this without this place and the wonderful people here.

@amyezar it is indescribable, which is why this is so great, we don't have to try and describe, we all 'get it' and that is a huge relief.