On Wednesday July 24th, I met with Northwestern’s esteemed Dr. Robert Sufit. He was a perfect combination of hilarity and brilliance. At times, I thought I was listening to the latest inappropriate story from one of my uncles. There was a lot of laughter that afternoon and he spent almost 2.5 hours with us (crazy). I did receive a Forced Vital Capacity (FVC) test, which measures my breathing capacity and is another key sign of disease progression. I scored a 97% so that was another good sign. He communicated his own positive interpretation of my EMG test from Mayo. Dr. Sufit was neutral on clinical trials and off-label drugs at this stage of the disease. Instead, he recommended me coming back sooner than normal (1.5 months) to track disease progression and then reassess his opinion. He did say that if the symptoms don’t progress much by March (one year post-first symptom), he would opine that it likely may be one of the rare, slower progressing versions of ALS. No one knows how slow, but I’m just hopin’ and a’prayin! Is it March yet? I’ll know its March once my Illini basketball are no longer playing. The symptoms continue to vary, some days are good, some days are bad. The past few days have been a struggle but life goes on. People seem to enjoy that I can’t talk as much anymore. Who would have thought? The limb strength is still perfectly strong, much to the chagrin of those witnessing Lindsay and my dance performance at Elizabeth’s Door County wedding two Saturdays ago. There was definitely no limb weakness in that catastrophe.
As for the Medical Fund, I cannot THANK YOU all enough for the generous, gracious and downright RIDICULOUS donations. From the $5 donations all the way up, every dollar has tremendously helped and is so much appreciated. Had I known, I would have pushed for this disease years ago. Kidding. As there are a number of cool fundraising events my family and friends have in the works, I thought I’d give some insight into where/how these funds are being spent (it’s not all going to the “Eric Sees The World” fund).
First, I still have HMO and thus my Insurance has paid for nothing thus far. We chose to go outside network to get the best care possible at University of Michigan, Mayo Clinic and Northwestern University. Not exactly medical care off of the Dollar Menu. My monthly prescription co-pays and OTC drugs have drastically risen. I should have a PPO secured by January, giving me more flexibility, however many items still aren’t covered and there is a large deductible. The next major expense will be the use of off-label drugs, when we deem it necessary. There are a number of drugs out there that have measurably slowed progression in a fair amount of people. The problem is the FDA takes forever to approve anything, and these treatments are still in the Clinical Trial phases. if I were to go into a clinical trial, there will likely be a 25%-50% chance (depending on the trial) that I would get a placebo pill and not even know it until the end of the trial (sometimes these last a year or longer). Given the average life expectancy of someone with ALS is 3-5 years, we do not want to take the placebo risk associated with these clinical trials. Instead, you can buy some of the drugs (or slight "variations" of the drugs) off-label even before the clinical trials have ended (yes, it is more risky, and those will be tough decisions). One drug we are looking at now costs $20,000 to 60,000 per year (depending on dosage decided), which will obviously all be out of pocket.
Lastly, should the disease ultimately progress, there will be a number of “luxury” items insurance won’t cover that would make my life so much better. For example, former NFL player, Steve Gleason, has technology to write and communicate with only his eyes. He has written football columns and also maintains his own twitter account. Truly remarkable. But who knows? The past 5 years have been so promising and the ALS community has had some HUGE stem cell breakthroughs in the past 2 years - maybe it will never come that. Either way, all of your fundraising help throughout the years will better prepare me for expensive experimental drugs and purchasing equipment that will increase my quality of life. If the researchers do eventually find some cure to ALS in my lifetime, any remaining money in my medical trust fund will go towards one of the amazing ALS organizations out there.
Thank you all again for all of your love, support and willingness to help with anything and everything (and for reading these incredibly long updates - I swear I start off thinking it will be one paragraph). You guys are the best! Looking forward to seeing everyone soon. Oh, and go hug someone close in your life right now and tell them you love them. Do it! What are you waiting for?
Eric