8.14.17 Clinic Update

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Friday was ALS Clinic day at Texas Neurology. Pictured above were my victims for this visit: My perfect niece, Ella, My Barden, and My Brotherman, Scott. If you didn’t know this already, I like to talk, a lot. Clinic usually takes 2-3 hours, putting us out right in time to hit Mi Cocina across the street for lunch. This time, we walked out of there at 2:30 – five whole hours after we arrived. See? Victim was the right word 🙂

This visit came with presents for everyone: FW Inc magazines with your girl cheesin’ on the front.  Turns out, when your face is on a magazine, people want to meet you. We meet a sweet, sweet couple that had traveled to clinic all the way from Midland. We also learned that some negotiations and collaborations are taking place that will get access to resources, services, and equipment for many ALS families that live far away. Teamwork making the dream work – whoo hoo!

All of my numbers were consistent with my last appointment or within normal range. Dr. Heitzman confirmed that my symptoms have essentially not progressed in the last year, which is absolutely amazing. Breathing is good, grip/pinch strength was the same, I am down 4 pounds but I can find those pretty easily. Not to be a debbie downer, BUT, I have progressed from this point last year – you can tell by the way I walk, the muscle atrophy that’s becoming more and more visible, the scar on my nose, etc. –  but it’s not an extreme enough progression to register on the manual muscle test.

“Manual muscle testing (MMT) using the Medical Research Council (United Kingdom) grading scale has been used in a number of ALS clinical trials. It involves measurement of muscle strength by a trained evaluator using standardized patient positioning. It was recently demonstrated that if enough muscles are tested, a decline in average grade can be determined early in the disease, and the variability of measurement approximates that of MVIC.45 The advantages to manual muscle testing are speed, expense, and the lack of needed equipment.46,47 Disadvantages to MMT are low sensitivity to change in muscle strength, the fact that data are ordinal, qualitative, and potentially subjective, in addition to which a large number of muscles must be evaluated to reduce variability and improve sensitivity.48

As we walked out of Dr. Heitzman’s office and back into the buzzing of the infusion suite, I heard one of my favorite country accents ringing from across the room. You would have thought we’d seen Elvis or something, the three of us immediately squealed and hugged and loved on each other.  I met Chrissy and Ren last summer through our superfriend Nancy, and later I met Mama Sharon. I’m sad Ren wasn’t at our clinic party, but Gods timing on seeing these two beauties was good for the soul.

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Surely by now you’ve heard about Radicava, and this was the first appointment we could take action on the new drug. I signed the paperwork for the Searchlight Support hub and am now waiting for further instructions. Really was hoping to leave with a date for my first infusion, but that’s not how it played out unfortunately. Also, Dr. Heitzman mentioned that insurance companies are developing their own criteria for approving this treatment and it does not apply for many of us. Here is UHC’s (my insurance) coverage eligibility. Trust me, we are staying on top of this and will share more as info becomes available. Kenneth and I are so grateful to everyone for the love, support, and prayers – God has a plan for us, and we trust him implicitly.

It was a great appointment with laughs, tears, and learning for all of us. While I still have you, I want to tell you about our new friend Chuck. He was sitting two chairs down from us, and stole the magazine straight out of our nurse’s hand. He introduced himself and read the article in between visits, then moved down closer to chat. He told us that he and his wife had 2 sons, one of which was diagnosed with something under the MDA umbrella when he was young, so he and his wife were no strangers to the greatness of MDA. He told us that his son married at 18, had two children, and passed when he was 36. Both of his grandchildren were diagnosed with the same disease as their father at a very early age, and Chuck spent 10 years mad at everyone, at everything, and specifically at God. Chuck told us that when he received his ALS diagnosis, it was a second chance to face adversity and confront this obstacle the way God had intended. He turned toward God, let go of his anger, and found a new peace and purpose for the rest of his time on earth.

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Y’all, I had goosebumps listening to him talk and just got them again from writing that out. God is good all the time.

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