You and your spouse or loved one is at your umpteenth doctor appointment over the past 10 months to find out what is wrong with you. You have been poked, prodded, jabbed, and stuff in MRI’s with no word of what you have, though some very scary conditions have been ruled out like MS, Parkinson’s, and a few other neurologic conditions. So the doctor performs two final tests by shooting an electric shock through your nerves, not fun, then jabs a needle into your muscles in different spots to read the muscle’s response waves, really really not fun. At the conclusion of the final test, the doctor in his most empathetic voice says the worst three letters, ALS (Lou Gehrig Disease)…he continues to inform you that unfortunately it is 100% fatal. There are two medications on the market that could, maybe, or possibly extend the average post diagnosis life span of 2 to 5 years by 6 to 9 months. There will be additional drugs prescribed to ease some of the effects.
June 22, 2021
Had my second ALS Clinic visit of the year on June 4th and it was a little bit of a downer.
I lost another 9 pounds, so I’m at 207 now. Weight loss is not good as progression moves with the loss. If cannot maintain my weight my doctor is pushing for a feeding tube so I can have calories added when I am not hungry.
My sleep study results came back just in time for my visit. I do have sleep apnea so I will be getting bi-pap ventilator and also a cough assist to help strengthen my diaphragm.
Met with my speech therapist to modify the paperwork so my communication devise can be ordered.
Next visit in 3 months
March 20, 2021
Had first quarterly ALS Clinic appointment yesterday, 3.5 hours long, 2 doctors, 5 technician. Unfortunately my lung volume and strength decreased, strength is arms, legs, and hands also decreased. We talked with speech technician about Eye-Gaze talking device and started paperwork to get it as my speech is declining. I am needing to add an additional 350 plus calories because I lost 9 pounds over the last 3 months, weight lose for ALS patient is not good. My PM&R doctor is ordering a sleep study to determine if or when I will need a breathing assistance machine. Not the best of appointments but was very informative.
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May 28, 2021
My life was gradually coming to an end, until I saw kykuyuhealthclinic. com on google during my research for alternative help for ALS/MND..
March 21, 2021
Prayers and love to you Alan
January 27, 2021
We continue to keep you in our prayers, Alan.
November 14, 2020
We’re praying for you Alan!