in partnership with Patient Caregiver Info
I don’t know where to start. I think the most appropriate place to start is to say that Eric and I are in awe of the light and love being sent in our direction from so many of you! Near and aft, we have felt it all! [...]
The past 20 months have been quite a journey. Not a journey any of us wanted to be on, but one we’ve tackled together.
Each day, we’ve faced the cards we were dealt and played our hands as only our family could. And most importantly, as only Eric could! [...]
As you've read in previous entries, all of us in the family are taking turns heading out to Montana to spend time with Eric and J... and also to help them make life a little smoother (yes, brothers and sisters CAN be helpful from time to time). I've just returned from my week there and am still struggling a bit to comprehend it all... I'm so damn grateful for the time I got to spend with them... and so heart-sick for what I see happening too.[...]
Time is passing too quickly, and I probably keep putting off an update from my trip because it's hard to put all my feelings into words.
It was wonderful being able to spend a week with Eric and J! I was grateful that I could be there and be helpful...not just in the way and annoying. But, let's be honest, I'm Eric's littlest sister; of course, I was annoying (and bossy). Yet, Eric's disease continues to progress. As Emily said, this disease is mean and slowly stripping Eric of many physical abilities. Texting, reading, video chats, and long conversations with friends continue to prove challenging even on his best days. However, Eric is still hilarious, generous, and incredibly kind. [...]
It has been a particularly challenging few weeks for Eric and we felt like it was time for a Post Hope update.
This disease is mean and has taken a toll recently. Eric's mobility has decreased dramatically and he has lost much of the function of his right arm and leg. His vision also continues to be impacted. As you can imagine, this makes walking, typing, eating ... challenging. In true Eric style, he has reluctantly accepted the help of a walker and occasionally the wheel chair. Occasional in home help, and a steady rotation of family members, are there to ease the load. But this change has been a lot to carry for both Eric and Johnanna.[...]
