Newly diagnosed

[debasismishra]

I am 60M just diagnosed last weak after 9 months of various symptoms. Still working. I am scared and lost. So many questions on insurance, finances, job and future as I begin to process this news. I have right side weakness and walks with a walker. Appreciate any guidance on how to navigate this with a positive mindset. Right now, I am scared about the future.

 

[Nikki J]

Very sorry to hear. First, even of you expected the diagnosis, it is normal to spend the first ouple of weeks in shock and grief. It does get better in that you start to see there is life after diagnosis . Give yourself a little time

We do have a section resources read them a little at a time They can be overwhelming at first Resources

We are happy to answer questions. The search function might bring answers from former members that are valuable too

You mentioned work and insurance. Many pals work for a time. It is individual obviously depending on your job , your health, your desire and resources. Insurance. Health insurance. If you have enough ss credits which most people do once you stop working you can apply for ssdi and medicare. An ALS diagnosis should make or automatic approval as long as you are not working. You can be out on sick leave or disability. If you are aveteran it is a 100% service connected condition

 

[debasismishra]

Thanks Nikki! Let me go over the Resources section first. It has been roller coaster of emotions since diagnosis and has been very difficult for the whole family.

 

[KimT]

I'm sorry. I was also working when diagnosed and I was living alone with no family. I sort of knew it was coming and got second and third opinions before I went out on family medical leave. I came back (I was a college professor) and decided I needed to quit so I was very careful in getting all my finances lined up. I met with HR and applied for LTD and SSDI at the same time. I was approved by SSDI in less than two weeks. The college let me stay on their insurance until my sick leave ran out (nearly six months) so I didn't have insurance expense.

It is a shock also when you stop working. I needed a purpose. I've found some things that keep me going and you will, too.

Gather together family, friends, and supportive co-workers. They will help you.