Good to hear. There is a wide spectrum of severity and rates of progression within the NMD group of conditions.  Respiratory watershed moments are certainly unpredictable but because we network so well nowadays online,  they can be anticipated and we can prepare to some extent.  Here are those power failure and ventilator failure strategies I… Read more

Thankfully more of us, patients and caregivers are living longer with quality,  and witnessed equipment change and become better, safer, and more efficient.  This is certainly true of vans, wheelchairs, and ventilators too – for instance, BiPaps now come with internal batteries for blackouts. Years ago we had to have UPS devices, cables to check… Read more

Logistically, blood tests or rather an inability to collect blood from someone with advanced MD, become increasingly frustrating in my social media groups and became  interested to consult a number of NMD adults to find that my son and peers fitted the rule rather than the exception.  Speaking to pathology experts and patients for whom even… Read more

These strategies all resonate with strategies my son used throughout his 20’s living with Duchenne MD. He quite wisely has a PEG now at 34yrs, not to stop eating but to put  his body under less pressure to obtain nutrients, risk aspiration and keep bowels regular. He still eats small amounts for some meals or to taste food… Read more