Health Update

Updates

After my traumatic setback with deep brain stimulation (DBS) surgery in May 2023, I was giving all my friends, relatives, and prayer partners updates. All of that stopped gradually as my husband and I just got tired, but I’ll provide a summary here because I have had so many inquiries. 

Home and Care

First, we have been receiving consistent in-home care for about a year, which has allowed me to enjoy home comforts and activities and allowed Chris to work and find respite. I have basically one dedicated care provider and then a collection of them from another agency. They are all professionals but might as well be sisters because we get along so well. One of my greatest de-stressors throughout my youth, college, and married life has been to bake. My husband brags that I can look at a dessert picture in a magazine and make the item from scratch to taste and look exactly the same. That’s not true but let him go ahead and believe that. So baking continues and my care people have all learned to bake something they never thought possible, even if it meant having chocolate icing somehow taking on a life and exploring the inexperienced care workers’ clothing and hair. 

Mobility

Second, I am maintaining some ability for mobility; getting around with my walker and wheelchair with assistance. I need the exercise and the freedom to scoot around our one-level home and travel locally. I am fighting against what thousands of retirees are experiencing every day in America: that agonizing move from a familiar home to something else. I have my home and with help, I am still mobile. My husband and I still attend college football games, go shopping, and occasionally win gift cards on Thursday nights playing bingo at a local “retired teacher bar.”

Communication 

Third, I am hopeful for my ability to communicate better or at least maintain my current status. I haven’t improved much from that second day out of DBS surgery when noticing horrifically that I no longer had a voice. I am still greatly challenged. Some good news is that after two years of rotten speech and just slowness in communication, I am having my first in-person meeting with a bonified speech therapist in my hometown. All of my previous speech therapy sessions were video visits or occasional in-person visits from a specialist from Fargo (an hour's drive). As it turns out, the reference for this miracle came from my husband’s PT guy (shoulder). We will be assessing eye-gaze and touchscreen communicative devices; therein lies my hopefulness. 

Mic-Key Still Saves the Day

Fourth, I HAVE improved in chewing and swallowing food to maintain nutrition, metabolism, and a healthy weight. This fantastic outcome was the result of having a “Mic-Key” tube inserted for nutrients and hydration. I blogged on this previously. Mickey saved the day then and is still my hero now. That said, if you have been with us on one of our mobility excursions to a local restaurant, you’d probably debate me on this proclamation of improvement. I am still sloppy, require a couple of trees worth of napkins and often feeding assistance. But this is not due as much to my mouth but is more the dystonia in my fingers that makes it near impossible to hold fork, spoon, and cup. 

Doctors and Experts

As we all hit our roads in retirement, it seems inevitable that some of us will pick up medical experts along the way to assist us in trudging down the road. My medical experts continue to make changes to my daily routine of taking Parkinson’s meds, G-tube feeds, and occupational, physical, and now speech therapies. They are persistent in trying to help me stay in my home paradise with regular appointments either here in Grand Forks or down in Fargo: neurologist, urologist, interventional radiologist, sleep doctor, and primary family medicine doc, all conspiring in a good way to help me slow the progression of my degenerative disease. 

Tis the Season

To conclude this update, I wanted to end on a higher note. I’m not looking for sympathy with this update, but I’ll take money, flowers, big candy, and smile-drenched visits anytime 😊. My road has not been easy but it’s my road and it leads to destinations still uncharted. I have found that Hope does have a name, that raising a hallelujah brings me tremendous strength, that there is peace in being still in the presence of One greater, and that anthems will continue to be raised. Looking further down my road I see more trips to local haunts, a vacation in a warmer state, more Perkins breakfasts, a Christmas season to reflect on Hope’s name, and visits from family members and elves.