Diagnosed, don’t know what to do

[jALSdiagnosed]

Hello,
I was diagnosed with jALS a week ago. Somehow I’ve managed to keep this a secret from my family. Maybe because I don’t yet have significant limb weakness or bulbar symptoms. The main symptom is respiratory weakness.

I am torn between the choice to tell them and to not tell and keep pretending everything is alright. I don’t think I have the courage to look them in the eye and tell them I will be dead in few months. I’m sorry for this rant but I have absolutely nowhere else to turn.

Guess I’m looking for someone to tell me to man up and tell my family. I still just can’t believe I actually have this disease and just want to hang on to normal life. It just feels so surreal. However I find comfort in the fact that with respiratory onset I will likely not have to feel what it’s like to be full body paralyzed.

 

[Nikki J]

Well they are going to find out sooner or later. If you celebrate one of the winter holidays that are about to happen you MIGHT wait until after but then you will have it hanging over you.

Are you fus? Have you looked into this? ClinicalTrials.gov

Sweden is probably closest it doesn’t seem to be a miracle for all but for some it has been. There was a German girl who had a significant reversal and she was more advanced than you - ventilated and very limited mobility. She couldn’t possibly have hidden it

I am sorry to hear this

 

[jALSdiagnosed]

Yes, I am fus. Wasn’t aware or told about this trial. Will have to think about this.

You are right, they will find out soon enough. I will come clean after holidays.

Thanks for the reply.

 

[Nikki J]

Don’t wait. Every day counts. I am not sure how it works with another country but find out. I can’t link but if you search Anna’s Story of Hope and Help: FUS-ALS with with Sonja Kämpfer and Dr. Neil Shneider you will see the story of the girl I mentioned. Good luck

 

[jALSdiagnosed]

Thank you.