Welcome to our CaringBridge website. Since Brian was diagnosed with ALS in August, I have had a hard time keeping everyone we love in the loop, so we are using it to keep family and friends updated in one place. I will be updating this page and posting frequently. Since I set up this page for Brian, we were struck with the unimaginable. Eli, our 8yo, was diagnosed with an inoperable brain tumor, called a DIPG. We are currently doing radiation. I do not know what this is going to look like. Some days are really good, some days are scary, depressing and hard, but Brian, Eli and I, feel it is important to give all of you access to our journey. Below is a description Brian wrote to his co-workers about his diagnosis. In 2019, this pilot turned engineer left aerospace, to jump with both feet into the exciting, new-to-me industry of medical devices and arthroscopic surgery. I joined Arthrex and moved my wife, Gay; son, Eli; and my in-laws to Naples. We bought a house in North Naples that needed work and set about with renovations – we have always done all our own construction. Less than a year later, in March of 2020, after recovering from severe flu-like symptoms and a sprained left ankle, I was taking a walk with my wife and 8-year-old son, when I realized I could no longer run – I just couldn’t get my legs to move and coordinate fast enough to run. A day later, my wife noticed I was slurring some of my words. We made an appointment with a local neurologist. After 4 months of MRIs, blood work, a spinal tap, EEG, EMG, and many other tests, all diagnoses had been ruled out, except for one. I was diagnosed with the terminal disease ALS (Lou Gehrig’s disease), for which there’s neither a cure, nor any effective treatment. The diagnosis was confirmed by University of Miami and Emory University. Since March, my balance and ability to walk has deteriorated to requiring a cane, and my speech has also declined, requiring significant effort to carry on a simple conversation. This progressive deterioration is characteristic of ALS, and will continue to paralysis. I’ve been asked if I’m scared, and I can honestly say I’m not scared of the journey I’m set on, but I am anxious about the caregiver and financial burdens I will be placing on family as my physical abilities degrade to the point of being wheelchair bound, and eventually requiring breathing support by mechanical ventilation. I have always been the sole support for my family (while my wife was the volunteer leader for Florida combatting gun violence and school shootings), in addition to being the fix-anything guy for my family, in-laws, friends, and neighbors. So, this reliance on others is very much a new concept to me . -Brian Valimont I had to share his words, because I want everyone to hear what Brian thinks, not my perception of it. I love my husband more than life itself, and I know that if you have taken the time to read this, you must love him (and /or me and Eli), too . If you know me, then you also know I have had a really difficult time talking to people about this. I just want all of you to know that it's not because I haven't accepted it or I am avoiding the facts of our new life. It 's because I do not want other people to feel as devastatingly sad as me. It's because I have a REALLY hard time taking, accepting or asking for help. I promise to do a better job, because I know we will need each and every one of you to get through this. We appreciate your support and words of hope and encouragement. Thank you for visiting.
Brian specifically requested that there not be any funeral or memorial, as he thought they were a waste of money. Instead, he requested a party, with alcohol. So what Brian wants, Brian gets! Please if you can come and celebrate with us as we celebrate Brian. It is also an extra special day, as it is Eli's birthday.
If you are able to join us, please RSVP here so that they have an idea of how many to expect.
In lieu of flowers, please also consider making a donation to I AM ALS in Brian's name. You can do that by clicking here!
Hope to see many people there armed with your best Brian story!
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