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Hi,   I've read many of your postings and I found them touching and helpful. Thank you. One conclusion I can draw is that the disease affects everyone differently, so there's no reason to be discouraged by another's failures or regression. Please take that into account before you read this.   My mother has PPMS. She was diagnosed in 1998, but had symptoms years before that, I'm told. She has been bedridden for the last 6+ years and has been a quadriplegic for 3-4 years now. Her husband of 22 years (my stepfather) and her grew apart emotionally during her battle and he strayed. As a result, they divorced and I (an only child) am solely responsible for her now. I don't have the burden of physically caring for her: she has a live-in person, weekday and weekend person to provide her needs. Needless to say, its all very expensive and finding good people is near impossible. It has been a nightmare although (knock on wood) we seem to have some measure of stability now.   Mentally and personality-wise she has also regressed, particularly in the last few years. She's kind of like a child who retains her adult memories. Recently, she's become harder and harder to understand and it's often only my knowledge of what she might say in a situation that allows me to guess what she's trying to communicate. Unfortunately, as her mind goes it seems more and more we'll spend five minutes trying to figure out what shes trying to say only to find it's about nothing more than a commercial on TV.   I should note that she never took any kind of MS drug, and judging by many accounts on here, that was not necessarily a bad thing... perhaps just saved money. She tried many, many forms of natural therapy but with little to no success. At least she's now open to medication to ease her discomfort and rest and improve her mood.   Fortunately, she does have some income stream: alimony, SS, disability for a while and a good 403B (401K). However, her expenses are such that we will eat through it fairly quickly and because she had to retire early, it's less that what it would have been. Like anyone planning retirement, I have to predict how long the money is needed and try to parse it out accordingly. Please understand, I'm not trying to be morbid, but all the information I find on the net is not helpful. It seems geared towards making people hopeful and putting a good spin on the situation.   The reality is my mother is 61, quadriplegic with significant muscle atrophy, can barely talk and I am to believe her life expectancy is relatively unaffected? If anyone knows of a place on the net with REAL facts, non-sugar coated, that can help caregivers and loved ones, I would appreciate it. I am trying to plan for her comfort as long as possible -- I dont want to be too stingy with her money, nor do I want to blow it all and have to put her in a home down the road.   Thanks. If you have resources, please email me at: clash (a)(t) iglou.com
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