Happy Thanksgiving ...Errr...Advent!

I hope you all had a wonderful Thanksgiving! I am blessed with family both immediate and extended that are loving and don't get on each other's nerves (so far as I know!). It's definitely easy to be grateful for my family. I know that's not always the case for everyone. But I'm in a season of my life where counting blessings has taken on more significance than it did in the past. So thank you for all of you and your continued thoughts and prayers. 

December 3rd came and went without much fanfare. It was even a Tuesday just like in 2019 because of the two leap years. The anniversary of my diagnosis. It's been 5 years. The most common figures used for the average life expectancy from an ALS diagnosis is 2-5 years. There's some that have upped that to 3-6 years, but who's counting? As many of you know, on my last Tuesday December 3rd, I was told 9 months. Now I really loved the doctor who diagnosed me despite his rustiness in ALS prognosis. His demeanor along with his medical assistant were absolutely wonderful, so I don't fault him for anything. He had already set up the 2nd opinion with my current doctor Dr Neel, and he did recant the time frame pretty quickly. Regardless, to say that I am grateful for the last 5 years is an understatement. 

Late November and early December is riddled with little anniversaries for us. A couple devastatingly sad, like the death of our little Anna and my diagnosis. But at least 3 extraordinarily happy events that lift our spirits more than the tragedies bring them down. There were two significant dates in college that Jane and I celebrate as the serious beginnings of our relationship. And then it was the 4th that we met our Lia and Kaleb for the first time in Ethiopia, 2009. Of course the late November date we received the referral and first pictures too. So this time of year has always been a bit of a roller coaster emotionally. We continue to thank God for each day together, and are more happy than sad. The addition of our Tasmanian devil (French Bulldog), Clara, 2 years ago Christmas has been a daily source of laughter. Quite literally! She reminds us that joy can be found even in dense squat packages that snort, fart, bark at nothing, come back inside to poop and pee, then use the house like a pinball machine with a mad hamster on a bowling ball with legs. 

I've been slowing down. Both Jane and I are continually sleep deprived. My needs for cough assist and suctioning are just increasing. Last week over Thanksgiving weekend, we had a little scare. I had had a few nights of really bad congestion. It seemed that however much mucus Jane could suction out of me, there was more. But this one late morning, I could not catch a breath. It felt like a part of my lung was collapsed. Even with my ventilator, I could not take a deep enough breath to satisfy that feeling like you've been under water too long. It's referred to as air hunger in the community, and is ultimately what I will need morphine to suppress in my mind so I can pass peacefully. But this was not to be that day yet! We texted my neurologist. He's such a wonderful man. Both Jane and I were texting him. He was most likely with family. But he answers texts from us about my condition. We only use his personal number for emergencies. From my description, he thought it was a mucus plug down deep and that I should go to the ER to be deep suctioned. This was the first time I've experienced a mucus plug down far enough that it was hindering my breathing without making me cough. For the most part, the phlegm attacks make me cough and so are obvious in their need for suction. Well I don't like the ER. Been there done that and it was awful. It's awful anyways but heap on top my inability to move or communicate that I am in pain while they sling me around like a crash test dummy or that plastic mannequin they learned CPR on and no thank you, I'm not getting on that ride again. Dr Neel sympathized with my displeasure of the ER visit, but in his very loving way his response was, "I know. But you might need it, Mr." Jane chuckled because we could both hear him saying this like he was in the room with us. I made him a deal that I would go if we couldn't clear it in a couple hours since he was concerned about my low blood oxygen level over a sustained period. We use one of those finger pulse oximeters to keep track of my O2 saturation levels during phlegm fests. He agreed. Jane and I hunkered down for some serious phlegmectomy. After some intensive hoovering of my pulmonary system, which was as uncomfortable as it was satisfying, we pulled out that green ghost that slimed Dr Peter Venkman in Ghostbusters. 

I won! I've been getting these mucus attacks more frequently. Not the slimer plugs deep down, but the general congestion. My own coughing is just no longer strong enough for me to clear my throat and lungs without assistance. It's just part of the disease. We battle it with water and mucinex along with a prescription and nebulizer that is supposed to open the airways and dry out the mucus. It's a little like putting a humidifier and dehumidifier in the same room and letting them battle it out. Dr Neel says that's just the battle. 

So that's it for my update. I'm sorry for slowing down on the posts. The technical ones in particular. I just haven't had that much awake time to dedicate to projects. I do still keep involved, but not nearly at the same level. Most of the time I just want to watch shows with Jane. I will try to update you all when I get my wheel encoders fitted so that the dead reckoning we do to keep our positional awareness more accurate. This along with the cameras on board my chair will make me closer to the lab prototype autonomous chair. Take care and have a blessed Advent season!