mybeautifulmigraine

My dear, dear friend.

It has been ages since I’ve heard your voice… now it comes through as an AI echo from your phone.
This illness has robbed the world of your laughter—your quick, off-the-cuff wit that always landed just right for me, dripping with satire, always dark and exactly my taste.
It has stolen your energy, your strength, your zest.
It keeps taking and taking, and I watch you grow smaller and smaller before my eyes.
You are hurting. And it breaks me as it breaks you.
This isn’t natural. It isn’t right, or fair, or just. It makes no sense. It feels against everything life is meant to be.
Even in the chaos of my own life, my heart makes space for you—always.
When I hold my grandbabies, you will be there.
When I dance with my son at his wedding, you will be there with me.
When I travel and adventure with my husband, you will be with me. I will carry you into all of it.
Your daughter will always have a mama bear watching over her—fierce, present, and unending.
Always a gifted gardener, I will see you in every flower, always.
Your garden will forever be in bloom.
And your extraordinary artwork—your beautiful creations—will outlive all of this.
They will hang in special places, rest in quiet spaces, and carry pieces of you into the future…
proof that you were here, that you mattered, and still matter, and that you created beauty nothing can take away.
I will be your voice when you cannot be. I want to be your voice.
And someday, the suffering will be over.
There will be peace—true, lasting peace.
No more pain. No more struggle to breathe, to speak, to laugh.
Just freedom. Just love. Just you… whole again.
I am not ready to lose you, my dear, dear friend. I will never be ready.
But when you are ready, I will honor you. I will not say goodbye.
I will only say: I will miss you… and I will see you later, when we are both whole again, laughing forever in perfect peace.

*What is Bulbar ALS? Bulbar-onset ALS is a rapidly progressing form of Amyotrophic Lateral Sclerosis where nerve cells controlling muscles in the face, throat, and neck degenerate first. Initial symptoms often include slurred speech (dysarthria), swallowing difficulties (dysphagia), and tongue fasciculations, typically progressing faster than limb-onset ALS. (ALS Therapy Development Institute)

Key Aspects of Bulbar ALS:
Initial Symptoms: Trouble swallowing, excessive choking, hoarse or strained voice, reduced speech volume, and tongue twitching.
Progression: It often advances quickly to involve limb muscles and respiratory muscles.
Prognosis: Generally associated with a faster progression rate compared to limb-onset ALS.
Management: While there is no cure, treatment involves multidisciplinary care for symptom management, including speech therapy, feeding tubes (PEG) for nutrition, and non-invasive ventilation (NIV) to support breathing.
Medications: FDA-approved drugs like Riluzole and Edaravone may be used to modestly slow disease progression. (ALS Therapy Development Institute)

Bulbar ALS, unlike other types, directly affects the ability to communicate and eat safely, leading to a higher risk of choking and pneumonia. (Medical News Today)