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lely81 karma
If I ever dared to "help" my dad with his disease I don't think that would go over well, haha. He is a one stubborn man with a quick temper. I'm the only one in my family that still has any kind of a relationship with him, unfortunately. He feels lonely and abandoned, but has cut everyone else out of his life.
lely81 karma
I don't have PD, my dad does. From my experience, I think this would be a great app! My dad is an anal scientist and kept a composition notebook with him at all times recording: how much and which medication he took, how long he was "on" and when he went "off" and time "off", side effects / specific symptoms and their severity.
He made little graphs where how "on" or "off" was on the y-axis and time on the x-axis with notations of when he took which med. It was very difficult for anyone else to read, obviously, a touchscreen would have been much more manageable. It might require help from a doctor or family member to input meds and doses. Larger icons would be best.
PD patients respond differently to meds, progression and side effects are also different. Being able to keep track of the symptoms, medication effects, side effects and progression of symptoms would most likely be an invaluable tool for patients and their caregivers.
I'm not sure how much elderly patients would use it, but I'm sure that young onset PD patients would find it very useful. Such an app would probably find use for a variety of other people suffering from diseases that require monitoring, i.e. diabetes.
lely83 karma
My dad was diagnosed with young onset PD at 40 (ca. 1995) he didn't have DBS until 2011. PD is an extremely difficult disease and there are many aspects that I find people do not talk about or are not aware of. It's not just about motor symptoms. As the disease progresses, there are more cognitive defects that become apparent. Basically, my dad doesn't have a sense of right or wrong, doesn't comprehend logic/reason, gets very emotional very easily, and he has paranoid delusions. His personality completely changed. This is all in addition to motor and speech deficits. It is extremely important to find good doctors, to trust them and follow the treatment plan.
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