Reading what Shane wrote about Anna was interesting. I was wondering if there was any documented honesty regarding the nitty gritty of his disease. He and Hannah definitely don’t go there on their channel.
I found this study about the time that primary and non primary caregivers spend caring for someone with SMA. It’s a long detailed study but bottom line is that primary caregivers spend 10 hours a day providing direct care to the person they’re caring for. 10 hours!! That makes sense to me. Granted that probably includes daily bathing and some physical therapy which we know Shane declines but the bottom line is that Shane and Hannah GREATLY downplay the reality of their existence.It’s unfortunate because it’s not a true glimpse into the life of an inter abled couple. Hopefully this link pastes correctly.
I found this study about the time that primary and non primary caregivers spend caring for someone with SMA. It’s a long detailed study but bottom line is that primary caregivers spend 10 hours a day providing direct care to the person they’re caring for. 10 hours!! That makes sense to me. Granted that probably includes daily bathing and some physical therapy which we know Shane declines but the bottom line is that Shane and Hannah GREATLY downplay the reality of their existence.It’s unfortunate because it’s not a true glimpse into the life of an inter abled couple. Hopefully this link pastes correctly.
The Burden of Spinal Muscular Atrophy on Informal Caregivers
Spinal muscular atrophy (SMA) is one of the most common severe hereditary diseases of infancy and early childhood. The progression of this illness causes a high degree of disability; hence, a significant burden is experienced by individuals with this disease and their families. We analyzed the...
www.mdpi.com