Dealing with post-concussion syndrome and muscular dystrophy
Lovina's daughter Verena shares her story of dealing with problems with concussions and muscular dystrophy, and they share a caramel recipe.
Over the years I have written about my daughter Verena’s brain concussion and the almost seven years that she had post-concussion syndrome. I also wrote about our children who have limb girdle type 2 muscular dystrophy. Readers have asked why my daughters use mobility scooters. Here is Verena’s story in her own words:
I have dealt with a brain concussion and post-concussion syndrome. I am now able to say I am completely healed. I pray for healing for anyone else who is dealing with it. God be with them and their families. I would fall easier than many children my age, which was later explained after my brain injury. I was diagnosed with limb girdle muscular dystrophy type 2A. I had small head injuries before my big head injury. One was by falling and hitting my head and another by being hit in the head with an ice snowball. Both times I was unconscious for a few seconds. I was confused after one fall and had to be taken to the hospital. I was sent home with a mild head injury and told to rest a lot.
When I was 12 years old, on June 2, 2010, I was hit on my temple with a football. I lost consciousness and then a whole year of my memory before I was able to remember anything. Family and friends tell me I was like a younger child again. I wasn’t able to walk at first. I had a huge personality change. I kept having memory loss, even after a whole year. I would lose my memory for days or weeks at a time, then I would snap back and be amazed to hear what all happened that I didn’t remember. Sometimes I missed my birthdays, sometimes holidays. I was told I was nothing like me during these memory loss episodes. I was rude, would scream and cry, totally opposite my usual self. I felt like my life was a mess. I lost friends because they didn’t understand my change of attitude. I found myself always crying and depressed. I was an honor roll student in school, and that changed as well. I wasn’t on honor roll and lost a lot of schooling. On the good days I had to work extra hard to catch up on schoolwork.
My last memory loss episode was in March 2017. In those six years and nine months I lost a total of three years of my memory. My mom kept a calendar of all the days I had memory loss. I know this is probably mild compared to many others, but I always wish I could talk to someone who had similar episodes. For those of you still dealing with this, there is hope for you. I have been in and out of many hospitals, had many x-rays, CT scans, and MRIs, but the brain is something only God can heal. He works miracles every day! Stay strong, keep the faith, and never give up!
Now my story about muscular dystrophy. I am not sharing this for pity or attention. I dislike pity. I only want to share my story so others can understand my disability. Yes, it limits a lot of what I can do. It doesn’t define me as a person, and it doesn’t make me less of a human. It doesn’t affect me mentally — only physically, especially my thighs, calves, and arms.
Yes, I might be in a wheelchair someday, but just like everyone else, I do not know the future. With time, I might get weaker. It is hard for me to climb stairs, but I can still do it. It is hard for me to climb in a buggy, but I can still do it.
There are many kinds of muscular dystrophy and it works differently on everyone. My younger sister Loretta has the same kind, but hers has progressed a little faster. We try not to look at what we once were able to do. We try to focus more on what we can do now and move on.
Take one day at a time and let our Heavenly Father lead the way. Yes, we have to learn to accept over and over what we have been given. We have to remind ourselves this is God’s choice for us.
I do not want anyone around me to quit playing sports because I can’t. They are not at fault and not to blame, but I do want them to try to understand that it’s also not fun to sit and watch. Loretta and I use mobility scooters for unlevel ground, holding our nieces and nephews, and for long distances to enable us to take “walks.”
My family has been great to have around and helped in so many ways. The church is also always willing to make our life easier. God bless you all and take care! –Verena, age 22
Six Minute Caramels
1/4 cup butter
1/2 cup white sugar
1/2 cup brown sugar
1/2 cup light corn syrup
1/2 cup sweetened condensed milk
Combine all ingredients. Cook 6 minutes on a medium high heat, stirring every minute. Stir and pour into lightly greased dish. Let cool. Cut, wrap in wax paper, and store in an air-tight container.
Lovina Eicher is an Old Order Amish writer, cook, wife, and mother of eight. Readers can write to her at PO Box 1689, South Holland, IL 60473 (please include a self-addressed stamped envelope for a reply); or email LovinasAmishKitchen@MennoMedia.org and your message will be passed on to her.