How do people live financially

I’m so sorry you’re going through this. Medically, I would talk to his Neurologist and see if another treatment might make him more functional and less ill.  There are several options out and things van be tweaked depending on response.

Financially, I would suggest looking into some of the financial resources on the Foundation page, although I think these focus more on paying for treatments.

Every families” situation is different.  My long-term partner continued to work fulltime remotely when initially diagnosed.  Not having that accomodation would have made infusions and life very challenging.

He had a cardiac arrest a few years ago which, because of anoxic brain injury, qualified him for longterm disability immediately through his employer and Social Security Disability a year later.  He was approved on the first try, which is not typical.  However, there was so much supporting evidence between various physicians’ attestations, multiple hospitalizations, test results, and the fact that he had not returned to his job after the arrest.

He lives with me and I carry the vast majority of costs and bills.  If I hadn’t already been working and very financially stable, he would likely be in a similar situation as you described.

So, in summary, so many ifs and variables in play here.  I think he counts himself very fortunate that , despite challenging diagnoses, he was able to use so many supports.

Life can change so quickly; Im so sorry you’re going through this and I pray you find the resources your family needs.

• This reply was modified 3 days, 12 hours ago by ehlersc.
• This reply was modified 3 days, 12 hours ago by ehlersc.