I’m Good…No really, I am good. “How are you?” I hear it all the time. When I answer, “I’m good,” it’s usually followed with “No, how are you REALLY?” Well, REALLY, I’m good! My dad reminds me though, when he asks how I am, he wants to know specifics: how are my arms, legs, breathing, swallow, emotions. Fair enough Dad. I have so many new ALS friends who are further down the road in their journey. They have to make tough decisions on care, equipment and surgeries that come with this lovely disease. You may read my story and feel sympathy for me; I feel equally the same when I read stories of my fellow PALS (people with ALS). Seeing these new friends of mine who are further along on their journey, some just 12 months ahead of me: feeding tube, BiPap machine, tracheostomy, Eyegaze communication (an eye-operated communication and control system that allows people with disabilities to communicate and interact with the world), power wheelchair, accessible vehicle, 24 hour care and many more surgeries and equipment I don’t even understand yet. Making tough next-step decisions—several of these friends have young children like me. It’s all part of my journey. I may not have my arm strength, but I can adapt for now. It’s as good as it’s going to get. But really, when you know what I know is coming —how could today NOT be good? I guess it’s all relative, so when I say “I’m good,” I really do mean it. I am seen at an ALS clinic and my dad is especially interested in these updates. The “I’m good” doesn’t fly when he wants a hard core “how are you?” report. An ALS clinic is like speed dating--- only in medical terms. I have my own room and the medical professionals rotate to me. I have a “date” with the muscular neurologist and nurse, occupational therapist, physical therapist, pulmonary therapist, speech therapist and mental therapist. They all rotate through my room and when they are done, they convene to talk about little ole me. They can’t cure me or make me better. The clinic just treats the symptoms as they progress and plans for the next big problem. After my visit last Friday it was noted…I continue to progress. My “naughty” left arm is shot and my right arm is substantially weakened over the past two months. I’m making logistical adaptions daily from how I help my children, how I brush my teeth, what cup I drink from, what foods I eat. I’m still driving, thanks to an adaption on my steering wheel. I’m not sure how long this will last, but I’m trying not to look down the road. My breathing is still strong—which ultimately is the key—lung capacity. I practice breath exercising to increase my lung capacity. ALS patients usually die of respiratory failure, so lung capacity is measured in real terms. When you diet you measure in pounds, when you have ALS, you measure in lung capacity. I’m at 71%. My leg muscles are strong, but I have noticeable changes in nerve reflex…you can connect the dots there. I tire easily and am always fatigued, both of which are typical symptoms of ALS. I have to decide how to spend my X amount of energy. In the old days I could burn the candle at both ends and recoup later. Doesnt work anymore. If I overdue it, I physically cant move the next day! My muscles twitch and spasm at night when I lay down. I am trying some alternative treatments to help with that, and it seems to be working. It doesn’t hurt (yet), but it is a constant reminder when I lay my head down to rest that I have ALS. My voice is still strong, but I have started banking my voice (recording my voice for possible future use on a communication device) before it starts to weaken. My swallow is still good. I had a swallow study done a few months ago and hopefully that will hold out awhile. Not too much pain. Mostly from where my “naughty” arm is carrying around dead weight caused from my arm separating from my shoulder. I can manage that pain at this point, but the biggest issue is to prevent frozen shoulder from lack of movement, so I need to constantly move the arm that has dead muscles. I “sling” my arm via a pocket of a jacket or vest and I wear or my new letter carrier purse. Functional accessory! Mentally, I’m taking each day at a time and that seems to be working *most* of the time. There are times I look too far down the road, or imagine life for my children and husband down the road —I just can’t do that and stay in the game. I am inspired by the community support, Team Dewey and the power of prayer. Honestly, I think that is the key to being good—being open to all three of those things. Tonight we carved pumpkins with my three little babes and tonight, in the here and now, I’m good!
Posted on: Wed, 29 Oct 2014 14:57:12 +0000
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