McArdles Disease (GSD5) AND Aerobic Training
In listening to your podcasts discussing nutrition and aerobic training (e.g. Phil Mafletone or AMA on Zone 2 training), I am interested in your perspective on how individuals living with a rare disease such as McArdles can safely go about achieving MAF and improved mitochondrial function. McArdle disease is a rare disease of muscle metabolism, which is caused by a deficiency of the enzyme myophosphorylase. The primary symptom of GSD5 is exercise (activity) intolerance, with symptoms of myalgia, untimely fatigue, stiffness and weakness of involved muscles, dyspnea and tachycardia upon exertion - which can lead to rhabdomyolysis, compartment syndrome and acute renal failure. While it is well recognized that regular physical activity is the best therapy and main modifier for the clinical course of the disease, it is also the leading trigger for symptom occurence. As a patient advocate, nurse-researcher and PATIENT, I am keen to develop an exercise program for this patient cohort, and believe the principles of MAF and RPE may be of benefit.
Modeling your practice in the current medical model
1. Could you expand on your thoughts on how you would counsel providers who wish to practice the way you do under the current medical paradigm? i.e.accepting insurance. 2. Making an assumption, it seems that the services that you and others in a similar space provide are largely out of pocket and cash pay? How can someone scale this down for individuals who can't pay out of pocket and have to use their health insurance? Would love to hear your thoughts on the systemic change that it requires and how you would navigate this. I understand that the education you provide is largely helping circumvent that and for that, we are very appreciative. Thank you!