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I am Sharon Williamson

caring for someone living with ALS

Massachusetts


He is a completely changed man, and this disease has taken a beautiful soul and rendered him changed and a mere figment of his once very healthy self.

Aug 8, 2021 started out as any normal day or so I thought. It was hot, we had dinner together, and 15 mins later he was dead on my couch — or as I learned went “unresponsive.” Rick was sent to the ER in ambulance after I revived him using CPR — the evening that change our lives in literally the blink of an eye.

Going “unresponsive” 4 more times and 25 tests preformed on him all coming up negative, 1.5 months in ICU on life support, it was a mucus plug removed from his lungs that became our worst nightmare. Rick was diagnosed with a rare form of ALS that attacks the phrenic nerve, causing breathing to stop, and is now 100% dependent on ventilation to live. Diagnosis was as stated: “We see maybe 2-3 cases of this form of ALS a year.”

He is a completely changed man, and this disease has taken a beautiful soul and rendered him changed and a mere figment of his once very healthy self. He is suctioned 5-7 times a day, weakness has rendered him almost bed-bound and he has already lost the use of his ring finger and pinky on one hand. I travel an hour and half every weekend after working 2 jobs to support myself and his needs, to bath, shave, sit with, and support him emotionally — while viewing the decline in a mere 7 months tragically having to wait for this horrible disease take him. This has been the worst experience in my life and he fights daily so he can hear from me just one more time.

Thank you for listening, please pray he leaves me in peace.


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