Rolf, Olivia, Harley and I ended July 25th cuddled in bed and fell asleep watching “Cars” the movie. 🙂 Thursday July 26th started off with an early wake up call for us all as Olivia headed off to volunteer at a local kids camp and Rolf & I headed to my appt with the neurologist. Because of a scheduling delay, I haven’t had a neurology consult since March so I was bracing myself for a tough reality check as we discussed my progression of the past few months. I’ve noticed increased weakness in my legs (especially in my knees) and I’m beginning to notice weakness in my arms. Dr. D confirmed both in her physical examination. In addition, she confirmed my need for a wheelchair based, at this point, on my inability to lift my left leg against gravity (anti-gravity). This led to a discussion about mobility. One of the things I’m finding confusing in the management of this disease is the seemingly contradictory but equally passionate recommendations out there. I’m told to conserve the limited number of neurons I have left by limiting how much I walk and exert myself while at the same time to keep walking…to walk as long as I can. What?! Dr. D confirmed both are true but it’s a delicate balance. Conservation is key but maintaining mobility is also important especially in maintaining my ability to transfer from one surface to another. The goal is to not push myself to the point of fatigue…I feel fatigued EVERY day (particularly at night)…another indicator that it’s time to manage my movement a little better.
I know the whole situation is out of my control but one of the things that makes these milestone moments in the progression of this disease so difficult for me is not wanting Rolf or the kids to ever think I’m not trying hard enough…as if my efforts could have any impact on whether or not I need a wheelchair. I know it’s an irrational concern but I just want to scream “MY BODY MAY BE GIVING UP, BUT I’M NOT!!!!”. Rolf expressed it well when he said that when we managed Rudy’s care, there was always hope of improvement in some areas and ultimately hope of getting him to another treatment option, for example, a heart transplant; with me, we’re in preservation mode…it’s a totally different mindset. There were a lot of emotional realities we had to face yesterday on the heels of an already emotionally charged week. I’m still feeling pretty wiped out today and praying for relief from the physical aches of grief…stinging eyes, neck and back pain, headache.
So what do we do now? The ALS Association hooked us up with a loaner wheelchair to use for now. I asked Dr. D if I could just get by with loaners and not bother getting my own…she said loaners are okay for now but as my needs change, it’ll be important for me to have a chair custom fit for my specific needs. Makes sense. So we begin that process that includes PT evaluations for the insurance company, etc. In the meantime, Rolfi was johnny-on-the-spot, came home yesterday and already built me ramps giving me access outside our bedroom to the kitchen and outside our front door! Grateful for that man.
Ironically, Olivia volunteered at a wheelchair camp this week (and made a quick appearance on our local news! Ha Ha). I’m proud of her for making the choice to be a part of this camp this week (we had hoped Rudy could attend this camp at some point but he wasn’t independent enough when he became age-eligible). Her week was filled with long, fun days surrounded by great friends and being a special help to new camper friends! I admire her strength and grace.
Wilson made it in from his extended field training and is back on base at Ft. Knox. He honored Rudy on the 25th with a 12 mile, timed ruck that completed his formal summer training. We can’t wait for his return next week and will soak up the last couple of weeks we’ll have with him before he starts his senior year at APU!!!
Max and the band are back in California and helping to staff a summer camp down south this week. We catch glimpses of him on social media working hard and having fun! He and his team have one more week of camp and then, he too, will be home for a couple of weeks before heading back to Point Loma.
Pursuing things we are passionate about is truly life-giving and I find it profound that all three big sibs were pursuing their passions individually this week while at the same time collectively honoring their little brother by living full. Grateful for these kids of ours.