Seizure Diaries: More of Same
Here’s the latest update from Steph on her husband and our brother, Charlie:
We missed the Hooper family regular call again this month, because I wanted to take Charlie over to spend time with our precious grandchildren and my son, Curtis. It was such a good and important time for our family.
We are taking it one day at a time, truly day-by-day in these uncertain times. Charlie is still having those nasty migraines daily. Some days aren’t as bad as others. The levels of pain range from bad to unbearable, varying by the day and hour. His seizures are still up. He averages between 4-7 seizures throughout the day with an increased number of gran mals in the mix.
Charlie’s inability to understand how to effectively do the simplest tasks is what really bothers him. I take him step-by-step through the tasks (doing the dishes, keeping track of his meds, wearing his helmet) and then incrementally build to tougher tasks. I try to encourage him. He is amazing at tracking his seizures, though.
We go to see the doctors at Milton Hershey Hospital regularly. Charlie has an appointment this week on Wednesday with a pain management specialist. He now has a total of three neurologists: Dr. Fisher is his main neurologist; and two other doctors specialize in headache treatments and memory loss issues.
This week I bought Charlie a new helmet; one that doesn’t put pressure on the shunt he has to drain his cyst. The new one allows him to have ample space to accommodate the temple pieces on his prescription glasses. This helmet is working out so much better.
Another source of frustration for both of us is that despite having all these doctors, none of them has an answer as to why Charlie has these chronic migraines. The neurologist has administered an MRI of his brain, looking for abnormalities and another test on his spine, to see if there were any issues with leakage, pinched nerves, etc. The diagnoses are that he has no issues with those matters. Now the doctor is trying to get him approved on his insurance for a monthly injection and migraine rescue medicines. These meds are targeted to focus exactly where Charlie needs them. So that is where we are with all of these issues.
As you can tell, Charlie is going through a lot right now. Laurie, just be reassured that I will always do my best to take care of him, and work with the doctors to do my part for his health and safety. Dr. Fisher told us that this will be a long and slow journey. His brain has already been through a lifetime of trauma.
Much love,
Steph
Henry E. Hooper 