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Finding Freedom

Living Forgiven and Free

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August 2018

Powerful Medicine

I believe in the good things coming — Nahko

The music of Nahko and Medicine for the People has profoundly influenced my journey. I adopted their chorus, I believe in the good things coming, as a motto to sustain me during my difficult days living with ALS. Nahko sings of peace and finding joy and gratitude, a message that is medicine for my soul.

I had the most amazing experience at a concert a few days ago. Nahko came out into the audience and I found him standing next to me. He held my hand and sang my favorite song, Love Letters to God. My heart nearly exploded. I felt his energy pour into me as he sang, I’ve never experienced anything like it. I was overwhelmed with a feeling of abundance and joy that could not be contained.  My heart expanded and I am compelled to be a conduit for the love and acceptance shown to me. Truly, he gave me his medicine.

Speaking of medicine, I was fortunate to start in a phase I, open label extension of an experimental drug trial. That means I get to take a new drug everyday for 11 months, with no placebo. I’m super hopeful that this novel molecule could stop my progression. I’ve lost the use of my arms and legs, but I can still talk, breathe, and eat — three things I’d like to hold onto.

So friends, what do we make of this? Two things: Medicine and healing can come in different forms and we can let peace, love, and joy flow through us in abundance. There is no shortage of these.

I’m Forgiven and Free and living life abundantly

Brain Damage to Gratitude

I’ve recently turned the scariest corner of my ALS journey — bulbar symptoms. I’ve lived in denial for five years, thinking I would never get there. But, here I am, experiencing loss of pulmonary function, choking, excess saliva, and slow speech. It’s devastating. Those who know me, know I have a LOT to say. The thought of losing my voice is terrifying. The thought of not being able to breathe on my own is harrowing.  

By the numbers, my Forced Vital Capacity (FVC) is 75% of normal. That’s still a manageable number, but it’s when symptoms begin to appear. You’ll have a hard time hearing me in a noisy restaurant and I’ll get exhausted trying to be heard. Being proactive against this beast, my physician ordered a trilogy ventilator. I will spend some time getting used to the bi-pap function that will give my diaphragm a rest at night and provide symptom relief during the day. This is typical progression and treatment. It’s not the end of the world, but it’s the beginning of my respiratory issues.

I quit taking my big vitamins after a few choking scares. But, my waistline will attest that I don’t have any trouble eating yet. You can see that my grandkids can still feed me breakfast in bed. Archer says, “A bite for Gramma, and a bite for me!”

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My voice is beginning to slow as I sometimes have to deliberately move my tongue when talking. It’s quite noticeable after a glass of wine. My speech pathologist predicts that my voice has about a year left. We’ll see how it goes.

I did have one surprise — Pseudobulbar Affect (PBA). It’s a treatable, secondary neurological condition that presents as uncontrollable, exaggerated, or inappropriate laughing or crying. People with Parkinson’s or ALS or people who have suffered a stroke or traumatic brain injury may develop PBA. I’d been crying much more than usual and thought I was experiencing typical depression symptoms. I decided to talk to my doctor about it after one particular episode.

Steve and I were at a restaurant called the Lazy Dog. I pointed out to Steve that the beer tap behind the bar was a red fire hydrant. How cute is that? I thought it was so cute, I started bawling. I wasn’t eager to admit I had brain damage, but I knew then it was PBA. I talked to my doctor and asked to try Neudexta, the medication to treat PBA, and to meet with a therapist to learn some new coping strategies. I’m happy to report that the medication managed all of my PBA symptoms within a week and the therapist is teaching me mindful meditation techniques to add to my toolbox.

I share all of this with you as part of my grief processing. By the time I am able to write about it, I’ve grieved, adapted, and accepted the situation as my new normal. I also write in hopes that you learn with me and ultimately live in gratitude, regardless of circumstance.

I’m Forgiven and Free and grateful you all are on this journey with me.

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