My ALS Diagnosis

By the summer of 2018 I knew something was not right. I kept experiencing cramping in my left hand and what seemed like tremors in left arm. I went to the first appointment without anyone with me not thinking much about it, which was with a neurologist. He ran a test called EMG which came back positive and said he thought it was ALS. I didn’t really know what it was so I went to my car and looked it up. I went home and told my wife, Julie, who was angry with the doctor for giving his opinion without anyone being with me. I sat next to Julie and cried. We quickly decided to get a second opinion. The doctor referred us to UTSW in Dallas who confirmed diagnosis.

Dr. Elliott at UTSW Dallas, ran the tests which confirmed the diagnosis and Julie was with me so we started educating ourselves beginning with Dr. Elliott. He explained to us the rate at which it moves is different from patient to patient and the FDA has approved four medications to choose from so we chose Rilutek. Radicava is on the list but we didn’t fully understand what it was for I now would recommend getting on this medication sooner than later.

The more the doctor shared the more expensive it sounded and it was not long before we were wondering how to pay for it all. He shared with us that prior military may get some help so Dr. Elliott put us in touch with our social worker who reached out to a Veterans Administration Dallas social worker. I dug out my DD214 and contacted the social worker at Dallas VA who connected us with Paralyzed Veterans of America or PVA. They did all the paperwork, sent it in and within days we found out ALS is a service-connected disability. It does not matter if you served in combat or how long you served.

There is help with a vehicle which accommodates the power chair the VA provides, help in remodeling your home, prescriptions and supplies, OT, PT plus monthly income. My Nurse Practitioner at the Dallas VA is very thorough, supportive and knowledgeable.

I hope to inform folks on my experience as one who has ALS but also offer hope to those have the disease. Your life is not over but a good support system is needed, like family and the Veterans Administration for me but also MDA and organizations like Team Gleason. Please contact me at joelanham53@gmail.com if you have questions.