CrystalJo's Journal

I am feeling so overwhelmed and confused about my husband's MELAS diagnosis. I see his health failing more each week, and in new/unexpected ways. There doesn't seem to be any rhyme or reason to it. No triggers, no explanations. Sometimes I think it's all the anti-seizure meds he's on, but the neurologist seems to know what she's doing and she's an epilepsy specialist. He speaks of wanting to stop taking his meds...all of them...but he has diabetes, hyperlipidemia (triglycerides were up to 1200 at one point!), past history of strokes, severe hearing loss, partial-complex-mixed seizures, neuropathy, encephalopathy, high blood pressure, depression/anxiety (gee...I wonder why??), muscle pain/weakness, exercise intolerance....cognitive deficits due to the recurring strokes/seizures....memory loss, aphasia/dysphasia....the list goes on and on. He has the "right" to stop taking his meds, but is he truly capable of making that kind of decision, considering his cognitive state? I have faith in God, but he does not. I'm running out of motivators for him.  He often asks "why am I still alive?"...."I can't do anything, or help..." His quality of life has deteriorated so badly this past year, since he can no longer drive, cook for himself safely, walk the dog, ride the bus alone, walk up/down stairs, communicate on the phone, read the newspaper (or anything else like directions on the TV dinner box) and lately he's having trouble reading the closed-captions on the tv even. I feel so helpless! He fatigues so easily & his balance is so bad that outings are difficult to plan or execute. I know I've venting but I am desperate to find some answers and some ideas on how to improve his quality of life. Thank you for reading this....I know it's too long. Hope to hear back from some of you soon.