There is nothing quite like a grandparent's love. To celebrate National Grandparents' Day on September 11th, we wanted to feature someone who takes pride in being a grandparent. Vern, a St. Louis community member of the MGA, discusses his role as a grandparent and what it is like to grandparent with myasthenia gravis.
Meet Vern Grothoff:
What is your name? Where are you from?
VG: My name is Vern Grothoff. I am from Manchester MO, about 24 miles west of the St. Louis Gateway Arch.
What is your role in the MG community?
VG: I am a myasthenia gravis patient. I stay connected to the MGA through support group meetings. The organized support groups are a great opportunity for me to talk with other MG patients about what MG is doing to me.
Are you able to work? If so, what do you do for a living? Are you retired? Or, how do you spend your free time?
VG: I have been retired for 8 years. I have always been very physically active doing yard work, building projects, woodworking, carving, walking, bicycling, helping our 3 children with their houses. My primary role today is babysitting our 3 grandchildren; 2 ½,3 ½, 5 ½ year olds on a weekly basis. Secondary, I would be on my road bike: riding, riding, and riding.
How has MG affected your grandparenting? Positively? Negatively? Differently?
VG: MG has slowed me down considerably along with losing some upper body strength. The grandkids get heavier. My babysitting days are 8-10 hours each, so I find myself quite fatigued and "muscling" through my "silly papa" shift. When nap time comes, Papa takes a nap! My bicycling has kept my knees and legs strong and flexible, for I can sit on my heels for considerable periods. I find it is most important to be on the floor or ground, playing and taking on role-playing and characters at the kids level. At their age, the children struggle with forming simple sentences and vocalize their thoughts, so they’ve learned to make up their own character voices and conversations for each of their toys. That is one of the most important activities that a parent or grandparent can do for their kids.
What do you hope your grandchildren will learn from you?
VG: It has always been a priority for me to make each child the focus of my attention. Look at them and listen attentively. I am patient with them, so I want them to feel the love and security and comfort in me.
How long have you been living with MG?
VG: I was diagnosed with MG in 2014.
Prior to being diagnosed, had you ever heard of MG?
VG: Prior to my diagnosis, I had never heard of MG. It took me 3 years to be able to correctly spell "myasthenia!"
How does MG currently affect you today? (symptoms/treatments/etc.)
VG: MG has become more aggressive over the past 2 years. As with a disease that has no cure, adjusting medications and treatments up or down are the only way we can hopefully find a combination that will work for me. Since the 2014 MG onset, I was doing IVIG infusions every month, with two, back-to-back infusion days each month for the last three years. Within recent months I found the IG wasn’t fully quieting the symptoms. Unfortunately, I did not find success with the new drug, Vyvgart. As I am writing this, I just had my 12th plasma exchange (PLEX) treatment. Sadly, the PLEX is also not fully quieting the MG. I still have daily chewing/swallowing and ptosis issues. Therefore, PLEX doesn’t seem to be my long-term treatment plan. The next steps will be trying the drug, Rituxan.
In your opinion, what is the biggest need you see in the MG community?
VG: The biggest needs in my opinion are both more MG awareness and drug research/clinical trials- it is the only means to unlocking the secrets of MG.
What have you learned from having an MG diagnosis? Has it taught you anything? Has it taught your grandchildren anything (that is, if they are aware of your diagnosis)?
VG: My grandkids are so young; they only know that the central line catheter for my PLEX treatments I have in my upper chest is an "owie." What I’ve learned is born from those standard clichés we hear when one is dealing with health issues: “Life is too short, don’t waste it” and, “Don’t just sit around bemoaning my situation, keep physically active,” and of course, “Hug your kids.”
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