Jeff and I travelled 6 hours round trip to Ohio State University today for a Phase II Clinical Trial. We spent 3 hours with a medical team who evaluated his total body muscle strength, breathing capacity, drew blood, and administered round 1 of the drug AMX0035.
Preclinical studies with AMX0035 in animal models of ALS showed that the drug combination can effectively inhibit nerve cell death and inflammation of nerve cells…essentially slowing down the progression of ALS. This is not a cure but hopefully steps towards slowing down the disease.
Jeff will drink a foul tasting powdered drink every day for the first 3 weeks and then twice a day for the duration of the 6 month trial. We will go to OSU every 3 weeks for evaluation. At the conclusion of the trial, Jeff will have access to the drug for 1 year while it remains in clinical trials (this is called Open Label Extension).
We agreed to be vulnerable with you and to help create ALS awareness. While daily life is challenging, we live each day to the very best of our ability. We laugh more than we cry and we savor the little moments. Even just lying in bed while his IV is dripping has become my favorite place to be…we’re together. Driving…we’re together. Watching our boys rock climb…we’re together. I realize the update below is hard to read. It’s harder to watch and even harder to live. It’s a progressive disease so each post will generally reveal decline. AMX0035, here is where you come in and stop ALS in its tracks! There are brilliant minds working towards a cure and we hope and pray we will see the efforts of their relentless research. As I have mentioned before, we experience loss daily. To survive the fears of the day and the fears of our future, we focus on the good and we are committed to living extraordinarily well. Jeff makes me laugh every single day! He is happy and draws his incredible strength from his family, friends, and primarily from his Heavenly Father. I love doing life with this man! He loves me fiercely and it’s so easy to reciprocate.
In the past 3 weeks, Jeff has declined primarily in lower body mobility. He stopped driving 2 weeks ago because reaction time is declining. We turned in his sedan and are down to 1 vehicle. We will be purchasing a wheelchair accessible van ASAP. Walking is extremely difficult and he can only stand unassisted for short periods of time. He needs complete assistance standing from a seated position 100% of the time now. His ability to chew, eat, swallow and breathe still remain strong, however attempts to cough are very weak. Abdominal muscles are used for coughing (rectus abdominis, internal and external obliques, and the transverse abdominis) and Jeff’s are very weak. His core (including hip flexors) has atrophied and therefore he can not sit up in bed, roll over in bed, get up from a seated position, get into a car, buckle a seatbelt, put on sunglasses (headphones, a hat), carry weight, etc. Fine motor skills are suffering and therefore he needs complete assistance cutting food, opening bottles or food packages, getting dressed, etc. Using utensils are becoming increasingly challenging and getting his arms to his face to eat is strenuous and utterly exhausting. The weight of a cup is too much, so he uses a straw to drink.
His mind is sharp but his body just won’t flipping move! A former marathoner, cyclist, triathlete, skier, and adventurer, now can’t fold laundry, help with dishes, get dressed, drive Evan and Cole to rock climbing practice or wrap his arms tightly around me.
On the bright side (we have many reasons to be thankful).
1. We just returned from a week in Colorado. I will blog about our amazing ski/mountain retreat soon. The views were breathtaking! We absolutely loved our time together with dear friends. We didn’t want to come home!
2. Our new home in Westfield, IN is ready for dry-wall and should be finished late May/early June.
3. We are in the midst of planning a summer full of dreams…Jeff’s 40th birthday on July 4th, hopefully a trip to the National Championships in Rock Climbing, and a 3 week vacation out west to explore National parks, introduce the boys to big wall rock climbing and Tara wants to summit a Colorado 14er. We have a lot to live for! And so do you. Get busy living!
All our love,
Tara & Jeff