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Two Year Mark

Today marks two years from my diagnosis date. ALS sufferers generally live two to five years after diagnosis. I'm grateful that I've made it to the two year milestone and I still feel relatively good. I still take food by mouth although I am careful about what I eat. First to come off my menu was popcorn. No matter, I replaced it with Jelly Bellies, buttered popcorn flavored. Yum! This year I took peas and corn off my menu as well as soup with mixed consistencys, like chicken noodle and vegetable. I miss corn. The item that I miss the most is cold, juicy watermelon. That was my craving when I was pregnant with my daughter. It's my go to during the summer and I could put one away a day. This year I got choked up on one serving. I can still drink thin liquids but I have to extremely careful to tuck my chin to swallow. Yes, I occasionally choke and cough.

I am no longer able to walk even with assistance. I think the last time  I walked was June, it felt like my knees were going to break then they gave way and I dropped it like it's hot. But screaming is not sexy. I can still bear my weight but I do feel myself weakening.

I haven't been able to feed myself for over a year. I got my feeding tube placed in May but I use it for hydration and medications (mostly supplements). I am still doing the Deanna Protocol as much as possible. Meaning I don't have a lot of faith that I'm getting all the dosages that I should get. My 3000mg Glutathione infusions went away when I ended up in the nursing home. Next went the hourly AKG pills because no nursing home has the staff for that. Most days I don't get all my doses of Arginine alpha ketoglutarate.  Also my supplements are looked upon and treated as "just supplements" like they are somehow of lesser importance than their beloved pain -masking drugs. The Deanna Protocol, when taken as recommended, slowed my progression, lessened my fasciculations, and allowed me to speak with more easily. Giving me way more benefit than the allopathic drugs did. For a Disease that had no treatment, the Protocol gave me some relief of symptomology that allopathic drugs failed to give me. And I put my money where my mouth is.

I wear my bipap mask most nights. When I don't, I'm tired. It's decidedly unglamorous, but so are bags under the eyes. I'm using the cough assist. There's a disgusting and yet life saving machine. Or is the suction machine the most disgusting? Oh yeah, it is. Did you know that the other night I was desperate to be treated and the nurse on duty asked me which machine was the cough assist?! Then the resident care manager, another nurse, brought down a sheaf of papers, instructions, and started reading them. My husband told them they did not instill a lot of confidence in their ability... Welcome To My World
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Location: Federal Way, WA, USA

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