So frustrated by my mother!

[Anonymous]

unless you live with a chronic illness all day every day, you just can not understand it. everyone is so full of their you should just x y z or why dont you...it can be really challenging. we also spend so much time at dr appts and being poked and prodded that this is one more thing to add to the list. then there is the fear - maybe of finding out that you cant do what some PT who has never worked with your disease before pushes you to do. or that what you do today will wear you out for the rest of the week. its so strangely complex and the need for logistical management to manage what needs to get done and what your body can do are baffling. give your mom a break, shes doing her best.

[Anonymous]

My mom has had MS for about 30 years and also refused treatment. No that she is in her late 60s, I've noticed a big decline, especially in the past two years. It is mostly in her ability to walk. She walks much slower now and recently has issues with balance. I urged her to get a new MRI and consult a neurologist as she hadn't seen one in several years (she had mostly been ok, so didn't see a need). He thinks she should immediately go on copaxone to prevent further decline/relapses and told her that if she doesn't, she'll eventually get to a point that she needs a wheelchair. She is still thinking about what to do. It is so frustrating, but I think part of the reason is that there is no cure and that many medications have side effects. And this particular one must be injected. She has always tried to eat healthfully and reduce stress as much as possible but in my opinion it is time to seek treatment. I just hate to see her lose her independence and spend the last years of her life (hopefully last decades of her life) in poor health. I will be her caretaker in the future and it scares me to see the decline as I also have a toddler and frankly, we both need her to be healthy and around.

Anyway, just wanted to share that I understand your frustration but also sense the denial and fear in my own mom. It is a complicated disease.