After Dx, what is the first step in planning?

[Pearl]

Hello. A very dear friend of mine has been diagnoised recently with ALS. The family is devastated. My question is: After one has been diagnoised and all the follow up doctor appointments and testing have been arranged, what is the first step in planning or making arrangements for the future? What sorts of things should they be considering or thinking about?

The prospects are overwhelming - personal care, financial, insurance, work, activities of daily living, legal issues, etc....

Does anyone have some suggestions?

 

[southern lady]

Finances permitting, do the things you were going to do

All of a sudden our "someday" list becomes do it now. Don't panic; all the other stuff will get done. Resolve to live & love one day at a time. My husband & I had a wonderful trip to Yellowstone, creating memories that we still draw on daily. Get a support team in place--family & friends that are willing to help bear the burdens. Don't read too much; don't believe everything Drs. say. They are only taught about the body & may not know the depth of the human spirit. We want to be part of your support team .Keep a sense of humor. Everything is not gloom & doom. We are your PALS! Love & prayers, Mollye

 

[SoniaT]

Hi Pearl,

​

I'm terribly sorry to hear about your friend. I agree with Southern Lady, do the things you can do "now", treasure every moment . Good memories are wonderful and can help in the hard times.

Later on, when the shock is not so new and overwhelming, try to do the important things like you mentioned, "personal care, financial, insurance, work, activities of daily living, legal issues." Perhaps you or another person involved in your friend's care can help make a list of things to be done and in the order of importance.

I found that the ALS clinic here in Vancouver was great with helping me with my mom, she had ALS. Maybe reaching out to some organization like that could be helpful.

Feel free to contact me via my email address ([email protected]) if you would like to vent or ask questions, I promise I will do the best I can with the experience I gained from being a caregiver.

God bless,

SoniaT
Vancouver, BC