@lisalucier in terms of day-to-day life, the biggest issue is loss of independence. This manifests itself in several ways: 1) limited mobility in her right side - both leg and arm are affected. This makes getting in and out of a car very difficult and at times, downright dangerous - unless I'm there to assist. As such, she has stopped driving herself which is a tough pill for her since she is used to being independent. Plus - we live in rural Georgia so anything she wants to do outside of the house requires a drive (nearest Walmart is 20+ miles away). 2) overall balance is terrible, meaning that she's guarded about walking through the house without a cane. Outside is even harder with uneven surfaces and obstacles that pose a constant tripping hazard. I am there to help and guide her but that's another sign of her dependence and it's frustrating for her. 3) Final thought here is that because of the progression of her symptoms without a clear context for what the future holds, it's difficult for her to have a 'good' perspective on how this disease will play out in the long term. We've had some deep conversations about the future and her view that the end is clearly in sight. While that sounds dramatic, the lack of knowledge about her disease is certainly debilitating for all of us.

For me, I've adopted a positive mindset and truly feel blessed to help her in this capacity. Thankfully I've been able to work from the house and schedule around her needs while eliminating any unnecessary travel. I have invested a lot of time and effort to do the research to understand the multitude of challenges that she faces and feel that I have helped get us to where we are today.