At the Myasthenia Gravis Foundation of America’s annual conference this year, Kathryn Rodriguez (pictured above with her husband Alexis) led some incredible breakout sessions for the caregivers/loved ones of those living with MG. This is her and her husband’s experience and some invaluable advice, not only for those impacted by MG, but for anyone living with or loving someone with a rare disease.
When Kathryn got married to Alexis Rodriguez they were in love and his health was fine. They’re still very much in love today, but what started as a persistent headache turned out to be something much more serious. They had endured minor medical issues as a couple, an appendectomy for example, but two years after they got married Alexis got a terrible headache. Kathryn didn’t ever remember him getting headaches before, and this one had him in pain for three days.
He saw a doctor and was given sinus infection medication, but when they noticed his left eye wasn’t moving, they went to an eye doctor next.
The eye doctor examined him and referred him to a neuro-ophthalmologist for tests.
The neuro-ophthalmologist was able to diagnose him with Myasthenia gravis and start him on prednisone, but then reached the extent of his knowledge of MG, and referred him to a neurologist.
Alexis and Kathryn sat in that neurologist’s office for three hours. They were stressed and no one checked in on them. Alexis gets paid by the hour and had lost three hours of pay before they’d even been seen. He decided to leave. Kathryn referenced this an example of her husband’s strong personality, which she says has been an advantage in his care.
“Self-advocacy is a must.”
Alexis’s medical journey continued with new doctors and new treatment, including IVIG and recently, Rituxin.
Kathryn and Alexis try to be optimistic but like everyone, they have their days. One disheartening moment Kathryn recalled, was discussing Rituxin with someone else and learning they were also on IVIG, rather than switching from one treatment to the other. The waiting to see if both treatments at once are necessary for her husband isn’t easy for either of them.
Despite the frustrations and stressors, Kathryn’s main takeaway for caregivers is that there is hope.
“There is hope, you can live positively with this disease. It’s not always easy to find your optimism, but it’s important.” -Kathryn Rodriguez
As with all things, there’s a learning curve and an adjustment period. Alexis was initially underwhelmed by his first support group meeting until Kathryn asked him what he was giving. Kathryn suggests this type of introspection if you or your loved one don’t feel like you’re receiving much from a support group setting. Look at what you could potentially learn or share, and how you can help. Kathryn emphasized how much people can learn from other’s experiences. Alexis is now a support group leader, and as Kathryn says, is always looking for how he can help someone next.
MG isn’t easy and Kathryn minced no words; “MG Sucks. It’s a hard thing to accept.” She talked about the stages of grief that come with the loss of normalcy, that it’s okay to be sad and to be angry. The important thing is to still come back to place of positivity, to find the silver linings.
Some pieces of advice from Kathryn for caregivers of MG warriors:
“You don’t have to fear this disease, just take it day by day.” Think of MG on a smaller scale, you don’t need to worry about the future every day.
Stay flexible, accept and expect change; your “new normal” can shift from hour to hour.
There are going to be negative people who deny that the disease is real or downplay it, people who try to tell you what to do. Accept it and shrug it off.
Don’t freak out because your loved one will freak out.
Try to learn what your MG warrior’s triggers are and watch for them. Help remind them to take their medicine, at the same time every day.
When you need to explain MG to someone who’s never heard of it and might be skeptical, you can try describing it as a cousin of MS or ALS, which most have some knowledge of.
Just keep going, “Dory it”
Even if they’re shutting down emotionally, be there physically (take their hand, rub their back).
Keep up the communication and pay attention so you know when symptoms are getting worse, etc., and when you can help.
Your loved ones’ perspective may be a little different than your own, and that’s okay.
And finally, “Remember, it’s not your disease. Caretakers suffer too, helping your loved one and watching them suffer takes a toll, and there will be frustrations but this is a journey you have to watch from the outside because only they know what it’s like on the inside.”
At the same time, don’t forget about yourself! “You’re in it for the long haul, you need to take time for yourself to sustain that.” Join a support group for caregivers, and take care of yourself. It’s easy to feel like you’re the only one going through it, social media/caregiver groups can help. Find a group, or a friend, or even a pet, to talk to.
You can let your loved one know how you feel too, and look out for your physical, mental and spiritual health. Don’t stop talking to one another.
Several people in the breakout session supported finding interests and outlets that you don’t have in common with your loved ones, to carve out some time for yourself.
“Find your peace place.” Your peace place could be anywhere, just a temporary place to separate yourself. For Kathryn, it’s the occasional nighttime trips to Target.
Over all remember that you’re a team. Keep up your communication and remember that every day, getting up is a victory.