I am Jeanne Hunter
a family member of someone living with ALS
Pennsylvania
My brother was diagnosed with ALS about 2 years ago. He will be 70 in January 2022.
My brother was diagnosed with ALS about 2 years ago. He will be 70 in January 2022. He has a type of the disease called “Flail Arm Syndrome”. He has been going to the ALS clinic at the Hershey Medical Center. Since his diagnosis, he has had progressive weakness in his arms & hands, & he is losing dexterity in his fingers making it difficult to pick up things & to dress himself, etc.
He has not taken the medication that was offered him, as he said, it’s only supposed to increase my life expectancy by 6 months. He has significant pain in his neck & shoulders, & he has lost muscles in those areas. He was given exercises to do to possibly assist with building up the muscles.
As of today, December 8th, he has lost 15 lbs. since August, which the staff at the clinic said is not good. The nutritionists gave him suggestions to increase his caloric intake. He has asked for a referral to see a Neurologist at Duke University who works with ALS individuals, & he hopes to be able to see him early next year – the sooner the better he says.
