3.29.18 If Tomorrow Never Comes

“‘Cause I’ve lost loved ones in my life Who never knew how much I loved them. Now I live with the regret That my true feelings for them never were revealed, So I made a promise to myself To say each day how much she means to me And avoid that circumstance Where there’s no second chance to tell her how I feel” – Garth Brooks

This won’t be as sappy as you’re envisioning, promise. So y’all know I’m a research junkie, anything I can do to participate, be involved, and contribute to finding a cure for this awful disease. I’ve donated gallons of blood (feels like it), spit, urine, skin, braincells, stool samples, various examinations, spinal fluid, and sanity to different forms of research. Just call me Lab Rat Sally.

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Each trial is different. Most have just been for research and one has involved a drug (Rasagaline) so there is always various forms of consent to give and read through in order to participate. Every trial, regardless of purpose, has a lengthy list of inclusion and exclusion criteria – think of the scary list of side effects at the end of drug commercials it’s kind of like that. Every trial is very specific about what you have and don’t have, symptom onset or diagnosis date, medical history, etc., etc., etc. Also, every trial has a target population, so some span years (rasagline was over 10 years long) in order to get the participation pool needed to move the treatment or drug or theory into it’s next phase of development. Because of the time it takes to get to the phase where patients are involved is usually lengthy, the inclusion/exclusion criteria is usually the first written and hardest to amend.

Perfect example of this is Radicava, it’s been less than a year since it became FDA approved so a lot of trials that were/are already in progress will not accept you if you’re on this medication. Call me selfish but I’m taking FDA approved to slow progression medication over Lab Rat Sally. Round 7 started on Monday and so far no news is good news, and there has been no obvious signs of progression – boomshakalaka!

Another item I’ve been avoiding because of research eligibility is the bi-pap machine – which I have accidentally referred to as my new defibrillator on more than one occasion, oops! Hearts fine, just ignore me.  Since I’m not research eligible and my insurance is changing, we decided to get all of the toys I’m entitled to. Fun fact: Bipap improves survival and rate of pulmonary function decline in patients with ALS. Summary: ALS patients using bi-pap for 4+ hours a day live longer. Another fun fact: it’s absolutely gorgeous to wear

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(pay no attention to those scraggly eyebrows, they’re getting taken care of soon- mustache not pictured)

So my new friend Dana from Joshua’s Respiratory Care came out Friday to get me setup with my new toy. She programmed everything so literally all I have to do it turn it on. She trained me on what to plug in where, how to troubleshoot, and who to call in a panic. This thing is pretty cool.
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Four hours sounds like a lot, especially those of you know how well I sit still, but y’all forget how sleepy I am, always. And it doesn’t have to be done while sleeping, so I can turn it on and watch TV or read. Speaking of reading, you need to read “All the Missing Girls” by Megan Miranda like right now, hurry!

Y’all know I love ya, whether tomorrow comes or not, but it’s always nice to hear again. Just another step on this crazy journey with ALS, and another way to keep those tomorrows coming. Ok, maybe it was a little sappy 🙂

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