By Jenny Gore Dwyer, Washington State
In 2005 my husband was diagnosed with ALS. ALS is also known as Lou Gehrig's disease…or "the Ice Bucket Challenge" disease…remember last August when everyone was dumping ice over their heads? That was for ALS.
ALS is a horrible disease where the nerve cells that tell the muscles to move, stop working, resulting in complete paralysis. When my husband was no longer able to work due to his paralyzing ALS, he applied for his Social Security Disability and Medicare.
I was very leery about "entering the system" and having Medicare provide for my husband's medical care needs. I'll be totally honest here…we were both pleasantly surprised! Yes, there were wait times, and yes some denials, but we were also given great guidance on how to work through issues. Nine times out of ten, what we needed was delivered as expected.
One choice people living with ALS must make is deciding to go on an invasive ventilator. A vent is needed when the diaphragm muscle becomes too paralyzed for someone to breathe on their own, and the ventilator breathes for them.
My husband chose against the invasive ventilator, and opted for Hospice care. Upon entering Hospice care, that's when we noticed the most benefit. We had care and medications coming to us. I didn't need to spend my energy dealing with ordering meds, equipment, or coordinating care. That was all provided for us, through our Medicare benefits.
With a disease like ALS, everything about it is hard. Nothing is easy. But, Medicare helped make a horrible disease a bit easier.
Happy 50th Anniversary and thank you Medicare for your help, guidance and caring people that you provided to us during my husband's time in Hospice, and at the end of his life.