My mom is 75 and has been living with PPMS for 25 years
Posted: Tue Mar 06, 2018 2:07 pm
I have watched my Mom decline for 25 years. She is lucky enough to be living at home with a 24 hour caregiver. She has been non weight bearing for more than a decade and has the use of one arm - sort of. She needs a lift to get out of bed and has a Class 4 wheelchair. She has cognitive decline and struggles following instructions that have more than 1 or 2 steps. She is struggling with retaining water. Her legs and ankles are HUGE. I don't know how long her heart can could possible circulate blood through her massively enlarged body. Her bloodwork is normal and she is taking a diuretic. She watches all of her carbs and eats a very low fat, low sodium, high veggie diet. Her respiratory secretions are getting worse, she coughs a lot and can't cough up all of her phlegm. It is scary sometimes being with her and listening to her trying to clear her throat. When she heads to her primary care and MS doctor, they don't have any comment on her current situation or symptoms. She takes Empira, inhalers, etc. But has you guys know, there is not much out there for Secondary or Primary Progressive MS.
I am trying to get a sense for where my Mom is in the disease process because I am the type of person who likes prognoses, I like information even if it is not what I want to hear. I get the feeling that she may have another few years.
Does anyone have any insight in situations like this? I realize none of you are doctor's. I reached out to her MS physician (I am healthcare POA, and Financial POA and co-trustee of her account) and found out she just left the practice. Ugh.
Any info is most appreciated.
Peace.
I am trying to get a sense for where my Mom is in the disease process because I am the type of person who likes prognoses, I like information even if it is not what I want to hear. I get the feeling that she may have another few years.
Does anyone have any insight in situations like this? I realize none of you are doctor's. I reached out to her MS physician (I am healthcare POA, and Financial POA and co-trustee of her account) and found out she just left the practice. Ugh.
Any info is most appreciated.
Peace.