A Mother's Voice on Dealing With Epilepsy

Being an artist and a writer, I was very interested to hear that art is good therapy for wounded soldiers. Then my thoughts went to the fact that probably a lot of soldiers with head wounds are dealing with seizures, as are their families. The person having the seizures has the worst end of it, but Dear God, let's don't leave out the families. They all wait for the shoe to drop, they usually just don't know when. Our oldest son is handicapped and has suffered from epilepsy for the past 53 years. In spite of this, with our help, he ran a country grocery store for 31 years. In hopes of helping others, I would like to list some things that I've found to be helpful to the patient, the care-giver, and the doctor.
1. KEEP RECORDS.
I've filled several composition books with dates and types of episodes. The doctor was very appreciative when it came time to go to a seizure clinic in New Orleans to try and pinpoint the exact location the seizures were coming from. I heard him comment, "Very good records. Very Good."
2. REACTION TO MEDICINES.
Write down how the mental state seems to be on certain medicines. For instance, is the gate more unbalanced, or the tongue extra thick. Do they try to walk in one direction and go another? If so, the doctor may need to adjust the meds or change it completely. He will appreciate your information on this. A lot of his decisions are based on your information. He's with the patient a short time, you're there for the long haul.
3. CERTAIN MEDICINES.
We all know that what works for one person may not help another. I have a cold chill at the thoughts of a medicine change, but sometines it's necessary. Years ago, as a result of adding two new medicines, my son actually went four years without a seizure. But during this time, the neurologist warned that there could be break-through seizures. My nerves were not prepared for the onslaught again, so I learned not to let my guard down. It's easier that way.
4. TAKE MEDICINE REGULARLY.
Someone needs to be sure the medicine is taken as prescribed. A person on several medicines may have trouble remembering if they took it, so, let's say they take medicine twice daily. Get two seven day containers with the day of the week in large letters, take a black marker and write MORNING on one and NIGHT on the other. Have someone double check to see that the correct dosage is in each container. If several medicines are involved, it is very easy to make a mistake, even for someone not on medication.
5. DON'T SKIP CHECKUPS.
This is very important. My son has lab work done every three months.
6. TREATMENT FOR GRANDMALL SEIZURES.
We live in a rural area and keep Diastat on hand if a seizure should go into a grandmall. Ask your doctor about this.
7. LIVING ALONE.
I pretty well know what goes on with him through the day. If auras threaten, usually seizures follow, so he keeps a portable phone with him, in a pocket or his chair. If I glance toward his home and realize a drape that was open has been closed against the evening sun,I'm relieved. And I think,'Okay, at that time, he was up and moving around'. Tele-marketers don't have a clue as to the damage they do to nerves if it's nearing seizure time and you're racing for the phone while the person who may be having a seizure is still able to talk. I bring my son over to my house for the couple days he's having seizures, usually every six weeks. My husband sleeps sounder than me, so I put cot mattresses on the carpet and my son sleeps on the couch. Through the night, he can softly call, "Mama, I'm having a seizure," and I'm wide awake. I sit on the edge of the coffee table until it's over, and then I wait ten more minutes to be sure it doesn't return as a grand mall. And I pray, and keep telling myself that he'll be better tomorrow, that it's his brain firing too rapidly. Sometimes my thoughts go to instances in the bible where Jesus casts out devils and evil spirits and I can't help but wonder if those people were plagued with epilepsy? The last thing I do before going to bed each night is call my son to be sure he's okay. It's a fine line to walk as you care for them and at the same time try to give them independence.