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yolx

New member
Joined
Aug 29, 2016
Messages
1
Reason
Loved one DX
Country
Slo
State
Osrednjeslovenska
City
Ljubljana
Hello my name is Kristof and two hours ago my father told me that he has MND and probably ALS and I am really sad so I wanted to ask how can I make this better for my father or my family as I am only 16 years old I don't know ALS and i don't know how it works my father just told me that he has about 3 years to live. He was diagnosed with MND half a year ago but he wanted us to have a nice summer without worrying about him. So i am just asking for some hands on experiences how to deal with this or just how to help the family out?

Anyone that responds i thank you with all my hearth!
 
So sorry to have to welcome you here.
It's hard to respond without knowing about the medical system & care in your country.
Right now I would just be there for him and take one day at a time. Try to enjoy the time you spend with him. Joan
 
Hi, Kristof, sorry to hear about your dad. At your age, you will be a great help to your dad and all your family. But two hours is not very long. Give yourself time to process, read a little about the disease and talk with your family about how you all are feeling, now that it is no longer a secret, and the questions and concerns that you have. It helps to keep a list so that you may research things, ask the doctors and find resources among your family and friends.

Also, you may want to remind your dad that you want to know what is going on with him as the disease progresses, so that you can help him as much as possible. Should he or anyone else in your family want to join us, here, of course, they are welcome as well.

It is important to know that three years is an average and he may live longer or less long. His breathing, nutrition and avoiding dangerous events like falls will all affect that time, and they will also affect the quality of the time that he spends with you.

If you can tell us a little more about what he can and cannot do right now, we may be better able to help. And of course, feel free to ask specific questions at any time.

Best,
Laurie
 
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