#Believing in Brian & Eli - ALS & Brain Tumor
Donation protected
In February 2020, I contracted severe flu-like symptoms and sprained my left ankle. After recovering from both, my family was out for a walk when I realized I could no longer run – I just couldn’t get my legs to move 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, EEG, spinal tap, EMG, and NCV, all other diagnoses had been ruled out and 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 February, my balance and ability to walk has deteriorated to requiring a cane and my speech has also declined significantly. These progressive deteriorations are characteristic of ALS, and will continue to total 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 burden I will be placing on family as my physical abilities degrade to the point of being wheelchair bound, and eventually need breathing support by mechanical ventilation. There’s also a whole host of caregiver needs and support equipment. This reliance on others is very much a foreign concept to me. 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 the fix-anything guy for my family, in-laws, and friends, and neighbors. My abilities to repair household issues have already been significantly curtailed.
Needs outside of insurance coverage:
· Travel for treatment and clinical trials: Mayo Clinic stem cell clinical trial in Minnesota
· Therapies outside traditional standard of care (e.g. functional medicine, supplements)
· Home Modifications: ramps at front and back doors, enlarge some interior doorways, modify bathroom and shower
· Wheelcar accessible transportation
Non-monetary (right now I’m still independent, so these are anticipated needs):
· Voice recordings for evaluation instructions
· Rides to and from work
· Help with house projects
After 4 months of MRIs, blood work, EEG, spinal tap, EMG, and NCV, all other diagnoses had been ruled out and 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 February, my balance and ability to walk has deteriorated to requiring a cane and my speech has also declined significantly. These progressive deteriorations are characteristic of ALS, and will continue to total 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 burden I will be placing on family as my physical abilities degrade to the point of being wheelchair bound, and eventually need breathing support by mechanical ventilation. There’s also a whole host of caregiver needs and support equipment. This reliance on others is very much a foreign concept to me. 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 the fix-anything guy for my family, in-laws, and friends, and neighbors. My abilities to repair household issues have already been significantly curtailed.
Needs outside of insurance coverage:
· Travel for treatment and clinical trials: Mayo Clinic stem cell clinical trial in Minnesota
· Therapies outside traditional standard of care (e.g. functional medicine, supplements)
· Home Modifications: ramps at front and back doors, enlarge some interior doorways, modify bathroom and shower
· Wheelcar accessible transportation
Non-monetary (right now I’m still independent, so these are anticipated needs):
· Voice recordings for evaluation instructions
· Rides to and from work
· Help with house projects
Organizer
Brian Valimont
Organizer
Naples, FL
