Yesterday Hubby and I received an email update about a dear friend of ours. It was devastating news and I need everyone to pray for our friend.
Robb is 39 years old and has been diagnosed with ALS, which is commonly known as Lou Gehrig's disease. It is horrible disease that completes takes everything from the body, leaving the mind trapped in a body that does not move or function anymore. The disease usually takes the person's life in 2-3 years.
Little background on Robb. Hubby and I have known Robb since we were dating. Met him on the soccer field, where else. Robb and his brother Mike are the funniest, "flirtiest" guys ever. (OK - Mike is married to a wonderful lady, they have an adorable little boy, but his eyes still sparkle of FLIRT!) Robb has always had the most incredible looking legs EVER!
He has the sweetest heart of any guy. When we had Crash, Robb, being the number one fan of University of Kentucky, brought him a gift, an UoK little uniform. Now, here is the amazing part. Pootie was 2. Robb with his giant heart, brought him a gift too. ROBB IS/WAS SINGLE!!! He did this on his own!!! He brought Jack a brand new "Big Green Machine" (a big-wheel). Jack was in hog heaven, it was his first big-wheel.
Robb shows up at soccer games, stops by just to give a hug and say hello. He is just that kind of guy. Our family loves him. (I will share that he has said for years that he is waiting on me to divorce Hubby and marry him. :) Hubby says take her.)
He is phase 1, and has been for about 6 months. He has met with the ALS specialist and right now they say that he is not currently showing any thoracic spinal damage and his “risk” reflexes look ok right now and those factors, along with his age, are positives for indicating a slow progression of the disease at this time. Doctors are going to go ahead and start treating it as ALS right away, he starts the only current ALS drug right away, as well as vitamin. E for muscle cramps, multivitamins and green tea (recent Harvard study with positive results). The drug can be harsh on the liver, so he’ll go for regular liver panels every 3 months to make sure his liver is tolerating the treatment.
Robb will likely be eligible for a clinical trial with an antibiotic that starts in April. He also spent time with a nutritionist, speech, occupational and physical therapists. The first had specific diet recommendations (high protein) and regular frequency of meals; the OT has given him adaptive eating utensils and ordered a special boot for balance; PT has entered him into the clinic’s exercise program which is very specific. Speech therapy felt his swallowing had not progressed to the point of needing intervention at this time (good news!). He’s “okay” in spirit right now- kind of taking it all in and ready to put the team’s plan into action.
Please pray for our friend and for his entire family.