Life and Love with ALS

Something I would recommend with all my heart to anyone facing an ALS diagnosis as a patient or a caregiver/close relative is some type of external support.  Friends are great, but they don't have ALS and their hearts are breaking for you. You need people to discuss things with, things like Health Care Directives and shower chairs and the best canes, things like what a clinic visit feels like. Things like coming home and looking at each other and dealing on three or four levels with a "no treatment, no cure" prognosis/diagnosis while you do laundry, work, car repairs and try to get some pleasure out of life. In that way, while Stage 4 cancer families and people coping with disabilities of all kinds have some things in common with you, where you find of heap of "YES - I get it! Here's what you can do about issue X!" is in that thing called the ALS Community. In 2017, you experience that community mostly online in places like ALS Forums. You can also exper...

As we know, Brian and I are early on in this thing called ALS. We appear to be blessed with slow progression. We are going to be in the seven month mark sense diagnosis on January 30. Here we are, Brian walking with just a cane, going to pool therapy and adaptive yoga, driving, doing stuff. A lot of people with ALS, particularly people his age are well on to or in a wheelchair at his point in a diagnosis. Yet, no matter what course ALS takes I think it changes pretty much everything pretty quickly. I work 45 to 50 hour weeks while trying to ensure I am performing at something close to my best capacity and the rest of time, I spend with Brian. I want to be Brian both because we don't have all the time in the world and because I think being retired and dealing with this he spends enough time on his own. Yet, I still need a friend night out sometimes, too (as in just me and a female friend). I like when we go out together with friends too, or when they come here to our place. I love...

So here we are six months post diagnosis. Life continues. We have great days, lousy days, medium days. Then again, didn't we always have those, just in a different way. Work is super busy, but I think I am managing it much better. I am going to be dead bang honest and say I am SO glad the holidays are done. I felt better on January 2nd than I had in awhile. Holidays are like that, you sit and compare one year to the next, you think of future years and what they might look like. It is a more difficult time to just be in the present. Brian is now doing pool therapy, adaptive yoga therapy. He still does way more around the house than he should probably do but I give my opinion and leave him to be who he is. I encourage him to pace his activity, eat more, etc and I think he usually does pretty well with the self care. I also think it is pretty important that I NOT become a den Mommy. There is a acronym you will hear in the ALS Community, being a "CALS", that is a Caregive...