Good God ‒ New Diagnosis

A New Route for My Retirement Road

My next two blogs are centered around the goodness of God, a new diagnosis, my fancy wheelchair (WC) and my hunt for a used WC-accessible van. I am hitting my road in retirement hard and trying to use available tools and medical helps to serve God and experience his goodness best I can. My WC and a WC van provide mobility; pretty important components of a “road in retirement” for someone like me battling Parkinson’s disease (PD). Most recently, after a spinal tap test of brain proteins, I received some interesting news; a new diagnosis. 

God is Good

Flooding my soul most recently is the truth of God’s goodness in leading me and Chris during this part of our life; fighting for mobility, fulfilling our purpose, and finding delight in His Presence. These words come into my spirit:

The LORD is good to all, he does good things, his mercy and goodness are forever poured out over all that He has made. Psalms 100, 119 and 145.

Think about those words, which represent a recurring theme throughout the entire Bible; God’s “forever” nature of being good and his actions proving his goodness to us. What could be more pleasant and comforting than being in a relationship with someone that exudes love and mercy over you forever! I’m giving a difficult update on my physical battle with a neurogenerative disease. But I can’t get past this magnanimous character trait of God; his goodness. In spite of the hardship I am undergoing, God has been so . . . so good to me. So, jump in the vehicle with me and let’s cruise a few new roads, trails, and avenues of adventure

Change in the Road

Chris and I attended a funeral during the end of COVID in the Duluth, Minnesota area. While talking to funeral participants over ham sandwiches afterward in the church basement, we didn’t have much of an appetite and both of us were starting to sniffle. We hit the road midafternoon and headed out on what we thought was a road that would connect to Highway 2, which runs an easy 270-mile course northwest back home to Grand Forks, North Dakota. Early on in that drive we were hit with heavy fatigue, tight lungs, and runny noses. About two hours into the drive, I woke up, and Chris had pulled off the road in someone’s driveway. The road and terrain were strange to me, thick woods and reddish-gray rock everywhere. Chris was squinting at his phone map and blowing his nose at the same time. We were both miserable with COVID-19 as it turns out and were not on the road northwest to Grand Forks but somehow in our virus fog were headed directly north to International Falls, MN! This is a huge metaphor for a recent “re-diagnosis” of my neurological disorder.

News

I have opened many of my blogs with the motif of “my road in retirement with PD.” Well, like our wrong turn to International Falls, our road has changed with respect to my diagnosis. I probably never had traditional PD, but rather multiple systems atrophy (MSA). Results from a recent spinal tap analysis revealed a significant presence of alpha-synuclein proteins, similarly, observed in PD, but quite different in location and impact. In Parkinson’s disease, these proteins accumulate inside certain nerve cells called neurons and impact the production of chemical dopamine, which helps to control movement and coordination. Dopamine replacement drugs and agonists are used to successfully manage PD for years. MSA accumulates proteins in different brain sectors compared to PD, impairing auto-brain functions, disrupting normal neuron activity, causing inflammation, and infecting other brain cells. In many cases (about 13,000 of us) MSA looks much like PD in early stages. But like me, with time PD meds and therapies provide no or minimal relief toward disease symptoms.  

So What!

As it turns out, I have 95% of the symptoms of MSA. Oh, happy day ☹. This was not “good” news; however, in a weird way our initial response to the diagnosis shift was “So what, God is still good.” King David, who endured innumerable hardships coined an often-repeated refrain; “Give thanks to the Lord for he is good, his love endures forever.” God's love and goodness are extended to us perpetually, no matter our circumstances. And I make this personal, believing that I still have a future with access to his goodness through whatever tribulation I may face. One positive element of MSA is that it doesn’t seem to spawn brain dementia complications like for many suffering PD. For THAT, I am extremely grateful. 

Bubblegum

The spinal tap results and update on my medical condition came during our trans-state excursion to pick up the WC van we purchased, located in Eau Claire, Wisconsin. Another MSA symptom that is not as common with PD is that my head is bent forward excessively, a condition called antecollis. My fancy new WC of just a few months is a 100-lb bubblegum pink Invacare SolarG3 mechanically adjustable “life changer.” It is fitted by a therapist with perfect support everywhere. The mechanics of the chair counter the antecollis and allow me to rotate back in comfort so that I can engage the world more normally and eat, drink, and take meds more efficiently. And most importantly, the BraunAbility WC van system that we have in our sights accommodates this WC, locking it and me, into the front passenger area. This way I have a broad view of the road ahead and can remind Chris to keep it between the lines. 

God Saw this Coming

I don’t blame God for my newfound MSA. More than anything, I’m relying on the enduring goodness of God to help me discern and navigate next steps. In Romans the Bible says, “In all things God works for the good of those who love Him.” I love Jesus and I'm confident that the good things happening around me are sourced in him. MSA is a challenge but as before I will lean on Jesus to deal with it. In my next blog I will chronicle how Chris and I started meeting this challenge. We did our homework and discovered that the BraunAbility converted minivan system could power our journey and open new avenues to explore and enjoy our retirement road. We became determined to get that van and miraculously found a used one at a dealership only eight hours away in Eau Claire, Wisconsin. Watch for the van story next blog. We are on our way! For now, I lean back into my good God’s arms; forever extended.

The LORD is good to all, he does good things, his mercy is forever poured out over all that He has made. King David.