Hi! My name is Melanie Aissa, I am a 43 year old Southern Illinois native and I was recently diagnosed with ALS.
Not only do I get a terrible rare terminal disease but the type I have is Bulbar onset which usually means the disease is more aggressive with a faster rate of progression.  So over the last few months I been walking around with this feeling of being gut punched while I try to go about my day. I do try to stay positive but there are days it is hard to shake that feeling of impending doom.

I have had to take time away from work which has left me without much to live on or meet all of my financial obligations. My partner has also had to miss work to attend appointments or care for me.

I applied for disability which from my understanding a diagnosis of ALS is like holding a flash pass at Six Flags minus the any fun stuff.

But it’s not so fast- I am unable to work at all right now and Social Security has been working on my application since 11/2021. Despite my diagnosis & worsening symptoms I have now been told it should be about 208 days until the SSA will determine if I’m eligible. I went from fully functional to being fitted for a wheel chair within 6 months- this disease is devastating.

Long story short I got regular bills plus all new medical related costs not to mention the need for ADA accommodations at home and a larger wheelchair vehicle- basically I could really use some help!

Check out my YouTube channel here: https://youtube.com/channel/UCpd6ggCHF4rzUKI157bR12Q

Or my blog here: mysocalledlifewithALS.com