fALS diagnosis

[Tam]

I was just diagnosed with fALS on Monday. I live alone and none of my family lives in the same state. I am worried about my future and how long I will be able to live independently. While I think friends are trying to be supportive sometimes I feel like they don’t acknowledge the reality of this situation. I was on spring break when I learned my diagnosis. I am supposed to return to teaching on Monday. I just don’t have the energy I need right now. I am still digesting the news. Any ideas on how to manage being newly diagnosed would be great. Thank you.

 

[Nikki J]

I am very sorry. Even if you knew you were FALS it is a terrible shock. The other part about being FALS is that you have seen the disease and KNOW the course it takes. That said, you may not follow the same path as your relatives to get there.

you don’t have to decide everything this moment and you need to be kind and gentle with yourself right now.

it does get better and there is life after diagnosis.

what is your gene mutation?

 

[Tam]

SOD1. I was adopted so I didn’t know a parent had the mutation. So, this is all new.

Thanks

 

[Nikki J]

I am sorry. A double shock. I expect you were told of tofersen I hope it will be approved quickly once the trial finishes this summer

 

[billybob]

I always looked at my diagnosis as a "divorce from myself". First there was shock, then anger, then denial and finally an acceptance of reality. I sought immediate counseling from a psychiatrist who specializes in the emotions of trauma. He has helped me immensely. He mentioned that sometimes joy comes to us uninvited, and other times we need to seek joy. Just be aware that joy is not a sacrificial lamb of this disease. There is some joy in every day. Look to the sun as often as possible, and you'll never be in the shadow. I would highly recommend considering professional counseling as soon as possible.

 

[EricInLA]

Billybob says it well. It is true that there is joy after diagnosis. It may take some time to get there, but you should know that it is there. I went through my own, not always well-defined stages, but I've settled into my reality and it is a new normal. This normal has good days and bad, but that was the case even before. Therapy didn't work for me, but an SSRI pill did, along with developing an appreciation for life's pleasures that maybe were taken for granted before. Friendships, family, travel (though Covid tossed a monkey wrench into that), hobbies, even work if possible - finding the satisfaction in these things really helps. If it's not there, you can make adjustments. Not all at once, but slowly.