Written on May 19
It’s day FIVE folks! Jeff has had 5 days in a row of IVIG therapy and now we wait for 3 weeks and hope for strength improvement. Jeff will return to the infusion center for treatment again in June and July. We should know within the next few months if this will be successful.
Jeff’s treatment this week alone is owed to the generosity of 75,000 donors (this explains the hefty price tag)! Please consider donating blood. Lives are changed, transformed and saved every day by donors.
As we mentioned before, IVIG treatment will not work for an ALS diagnosis. Jeff has been diagnosed with ALS at the Mayo Clinic and they ruled out MMN. However, we are still clinging to the fact that the ALS clinic here in Indy was not 100% confident in ruling out MMN (Multifocal Motor Neuropathy) and therefore we are proceeding with treatment.
Both ALS and MMN are rare diseases, MMN being so rare that most Neurologists have never seen a case.
To put this into perspective, below are a few statistics of people currently living in the U.S. with neurological diseases:
MMN – 3,000 – 6,000 people
ALS – 20,000 people
Parkinson’s – 500,000 people
Alzheimer’s – 3 million
Please pray that this treatment will work and that Jeff’s muscle strength improves. In the waiting, we are going on a rock climbing trip with the boys over Memorial Day weekend at Red River Gorge. Jeff and I have always enjoyed training together and competing in endurance events and as a family we love the outdoors…particularly camping, hiking and rock climbing. Although Jeff can no longer exercise at high (or even moderate) intensity, he still feels the EXTREME pleasure and pride of watching Evan and Cole excel in the fascinating, heart pounding, muscle burning, adrenaline rushing sport of climbing. Next weekend, we will camp (I’m gonna be honest…I love camping until it’s time to crawl into a ⛺️! Bah! All for the boys, right?!?!). We will hike, EAT, make memories and watch our boys accomplish more than they think they are capable of…We can’t wait! “There is a reason some people think they can do anything…they listened to their parents.” ❤️
Let the adventure begin.