My wife Anita and I are now in our sixties; we met in our late forties. We hit the ground running early in our relationship. Anita had already published a book about her first two mission trips to Ghana, West Africa. That opened the flood gates for me, and we published another book about my life within the first nine months of meeting. We traveled as far west as Hawaii and east to Africa. North to Nova Scotia and south to Belize. Anita was always happiest in the most inclusive and diverse conditions. A memory that stands out is a small dinner in our home with new friends from Sri Lanka, Mexico, China, and Ghana.
Today, I am a caregiver for the best human I've ever known, my wife Anita, who was diagnosed with MuSK+ MG in 2018. Witnessing the onset of what seemed like life-threatening symptoms and the frustrations of finding any solution was the scariest time of our lives. Mind you, during this time I was the only caregiver for my mother, who suffered from dementia. I am a disabled Marine veteran diagnosed as bipolar and as having PTSD from a helicopter crash, who at times needs caregiving myself.
I have a passion for supporting those in the "newly diagnosed" category today. The onset of MG turns your world upside down. From my perspective as a caregiver, MG life is all about caregiving. In an ideal scenario, a person is diagnosed and treated under a physician's care. The patient learns their limitations and cares for themselves. And the caregiver fills the gaps.
It grieves me to hear of relationships failing under the stress of the life-changing symptoms of any type of MG. MG patients don't have a choice. Caregivers do. Not everybody is up to the task, and I have discovered caregivers need care, too. MG, like an addiction or other life altering condition, affects the entire household. Immediate and major adjustments need to be made and endured.
To demonstrate how much of an impact MG has, we went from this to this in the blink of an eye.
A Caregiver will often realize and accept that MG is not going away before the patient accepts it. There is a toll on every aspect of life. It consumes your psyche. All your energy is in seeking information to understand what you're up against. You scour the internet, read medical journals and medication trial results, and learn more medical terms than you ever cared to. Your sleep, intimacy, finances, diet, and exercise are all out of balance. You're balancing on a ball and juggling flaming knives – hyperalert.
My wife went from the highly educated, witty, super active woman that I met and married to being unable to hold her head up. She had difficulty chewing, double vision, and when she spoke she sounded like Elmer Fudd. She began having difficulty breathing to the point where she couldn't sleep. She'd sit on the side of the bed in the middle of the night and gasp for breath. She couldn't bathe or dress herself.
Three trips to the ER in thirty days in the back of an ambulance finding frustration in the lack of knowledge by medical personnel about MG will get you into an incredibly aggressive or completely defeated state of mind. I was scared to death that my wife was going to die. She lay on a gurney still barely able to breathe, using a CPR resuscitator bag on herself, and no one was doing anything to help!
Anita was finally diagnosed the day she was discharged the second time, still suffering from the same symptoms. Prescribed a useless medication that had the same symptoms for under dosage as over dosage.
We sought help elsewhere. Online research revealed Duke University Medical had a highly respected Neurology department specializing in MG. I drove Anita to appointments, four hours one way. She rode along using a battery-operated breathing machine, aka a bi-pap, that we obtained from a pulmonologist she'd already been seeing for asthma.
In a wheelchair that we'd brought along, I pushed her down the long, unfamiliar hallways of a distant hospital.
Wide eyed, I absorbed everything the doctor told us. By the end of the visit, we understood the treatment. We both breathed a sigh of relief. We felt seen, cared for, and hopeful that the current conditions could and would improve. We loaded up and made the four-hour journey home. We stopped for a rare treat to celebrate. A Wendy's Frosty. Little things like that seem so wonderful when you've been wandering in the wilderness searching for answers.
We made one more trip to the ER due to a choking episode, where the EMTs found us on the living room floor recovering. Her lips had turned blue, and her eyes rolled back in her head while I desperately tried all I could to save her. Once again, I'd thought I was going to lose her. My hypervigilance grew. I can't count how many times I'd lay in bed or have a quiet moment and feel that MG is such a bully. I’d wish it had attacked me instead of Anita. I'd take it all away from her if that were possible.
The future held appointments with her general physician, a neurologist, a pulmonologist, an optometrist, a dentist, and an ophthalmologist. High-dose Prednisone induced Glaucoma, spurted growth of cataracts, and created a macular crease. It also cracked a few of her teeth. A few surgeries later and weaning off of Prednisone, things were better. You're fighting one battle after another.
Life didn't stop while we played catch up. I dropped 70 pounds. Grandkids were being born, events we could no longer attend were still being held. We lost Anita's parents in a tragic car accident, and my mother passed away two weeks later. Talk about kicking you when you're down! The various stages of grief that were already evident in our lives were now amplified. Then a pandemic arrived. More hypervigilance and less getting out and about. We pressed on.
Today, Anita's MG is well managed. She is driving to her own appointments, she's active with all her crafty projects, and back to feeling good about being productive. I push her to achieve more than she thinks she can, and I understand when she just needs to stay in bed longer and let her batteries recharge.
She's remained the most wonderful human I've ever known.
I have not always made the best decisions for my own care. When Anita regained her independence, I let loose and used alcohol to relieve the hypervigilance that gripped me. This was not productive for me; it stressed Anita and is counter to my role. I reacted to this by beating myself up, having thoughts like, "I'm not a good caregiver," which I prided myself on being. I gained 50 pounds back.
Caregivers must be as willing to accept their own shortcomings as they are for their patient. You'll go through phases. You'll go from feeling incredibly determined to feeling completely defeated. From Energizer Bunny to complete exhaustion. But in time, I promise, determination and patience will prevail.
I try to find what I'm thankful for. We're thankful the kids have become compassionate adults and good parents. We're also thankful for organizations, groups, and individuals who seek to inform, treat, and support families that experience the monster of MG – MGFA and argenx to name just a couple.
Under great leadership they've pressured the system and made incredible, record progress with so many new treatments now available and in the pipeline as well as commercials on TV! MG is becoming a term people understand. It seemed relatively unheard of just a few short years ago.
Even with treatments that bring a tolerable sense of normalcy to the MG patient’s life and the caregiver able to return to some activities that were sacrificed, I find that part of my psyche will entertain thoughts of impending doom in consideration of memories developed during the onset period of MG and now facing the long-term effects of immunosuppressant medications on my loved one’s longevity. I try to stay present and celebrate the progress.
We try to give back. We've given our local EMTs literature on MG. We've shared with our friends and family what we've learned. We've found ways to make a difference.
Anita has volunteered for new treatment trials and is an MG Friend through MGFA. She gets assigned to individuals who have reached out wanting to be contacted and calls them as often as they desire. We wish we'd have found something like this in the early days. I am seeking to do similar for caregivers.
I donate plasma since so many MG patients use plasmapheresis as a treatment, and they even pay me for it! Did you know you can donate plasma twice a week? I highly recommend it if you're able. It's quite rewarding.
Today, life is good. We're thankful and closer than ever.
Caregivers, please reach out. Find a support group near you.
You need to be acknowledged, heard, understood, supported, and cared for.
This story first appeared on David and Anita’s blog, Living Out Loud. Follow along with their story there.