Our journey began a little over a year ago when I began noticing that my legs were cramping and causing me an overall feeling of weakness. Almost simultaneously my left hand had begun to appear different and loss of muscle was noticeable, while my strength had lessened. Initially, my wife and I believed this was a side effect from a previous fall a few months earlier in which I slipped and fell at a football game.

My initial clinical visit was with an Orthopedist. After only a few moments of watching me walk and doing some bilateral strength tests, he explained he believed this was a neurological issue. We left the office a little confused and immediately scheduled the follow-up tests that he ordered. The EMG and blood work would be up first. After the tech and doc who performed the EMG, Chris, my wife, who works in Neurology as an Account Manager for a pharmaceutical company began to have her suspicions that this was something serious.

The next stop was my wife pleading with me to get admitted to the hospital and complete more testing and diagnostic evaluations. I spent a week in the hospital and with all of the data collected left there with a referral to the ALS clinic at Temple with a secondary option being UPenn and or Columbia.

My journey to diagnosis ended on March 26th, 2024 when the Temple ALS Team sympathetically explained they believed I was suffering from ALS symptoms. My face must have looked blank, as Dr. Lyle Ostrow repeated, “You know Lou Gehrig’s Disease?” I can't tell you exactly what I was thinking at that moment, other than "Well let's get on with it, as I have a lot to live for!" I have not spent much time feeling sorry for myself, but yet my wife and I face this head on and even bring in humor whenever we can to lighten the mood and focus on the future.

From day one until present, this group of people have been there to hold our hand, answer calls and emails, and help all of our family learn to deal with our new normal way of life. We completed genetic testing and found that I have the most common ALS gene mutation, which is called C9orf72.

The Team at Temple immediately began letting us know about potential clinical trials and prescribing all available medications that I was eligible to take. Having the clinical team explain all of the options and potential clinical treatments on the horizon increases all of our hope for an eventual breakthrough in treatment. You will not find a more involved and personable team. The Temple Team has a way of turning a horrible diagnosis into hope and comfort by educating the entire family about the disease. They connect each patient to advocacy groups like ALS Hope Foundation, Joan Dancy and pALS of Monmouth County NJ, and even other research-based organizations. In addition, they share information about vendors for leg braces and other equipment that can help with daily activities.

From the first day of diagnosis to now, we have never felt alone in this fight. We continue to have one request of the team: if any other patient or their family members need someone to talk to and are willing to meet with my wife and I, we are ready, able, and willing. We are all only as strong as the ALS community to which we belong. Strength in knowledge and support is paramount with a disease like this one. We can’t recommend Dr. Lyle Ostrow and his team enough.

2024 Season of Hope

By ALS Hope Foundation

2024 Season of Hope