It was in the spring of 2013 when Joe started having very subtle symptoms. Symptoms you would never even think would be associated with ALS. First it was a foot issue when walking, along with a prolonged cough that we thought was a virus. After going to see his PCP, he was treated with an antibiotic and sent home. As the month of April came we decided to put in a patio. Joe was the desinger of the area and started laying pavers. We started noticing some arm weakness and slurred speech. Once again he went to the Dr and was told it was anxiety. The medication never worked and the speech got worse. I advised him to go back as it was not anxiety and more of a neurological condition. This time I went with him and mentioned that he needed to have an MRI and needed to see a neurologist. At this point, Joe was sent to a specialist who specialized in ALS. He went through several different tests. Within 1 week we got the news he was positive for ALS. It has been a very fast progressing illness for Joe and very stressful for the family, especially our 11 year old daughter. We had to sell our home and downsize due to the cost of his care going forward with needing to have sitters during the day while I work as he cant be left alone. He can no longer care for himself.
ALS is a very devastating illness, and it affects the entire family, emotionally, spritually and financially. It is an illness that you have no control over and it never gets better and only gets worse.
There are no non profit agencies out there to help families with these expenses. Something needs to change. As much as I don't like asking for help, I can no longer do this alone.
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