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Advice for me on how to help, new to epilepsy
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An_254839 posted:
I'm trying to get up to speed understanding temporal lobe epilepsy to help my elderly parent who has been recently diagnosed.

How have other adult children handled things such as:
1-Being told about things that sound exactly like seizure activity, by the person, but being told not to consider them as seizures.

2-Witnessing a kind of temporal lobe seizure commonly noted in descriptions, but the person has no memory/awareness of it.

3-Not knowing what the person is experiencing that they are not reporting to anyone.

In general, my parent does not want any trouble and wants to keep driving, is taking medication for last 6 wks, is being followed up on by md's, and they want to believe that nothing's wrong.

I guess I have to explain to the person what I'm seeing and being told by them sounds like more seizures.

It seems straightforward when I say it like that--but I guess the question of driving privileges makes it a big issue... Do they need to go back to the doctor's immediately if seizures are happening every day or two now still? They are still driving, thinking the medication fixed the problem.

Any words of wisdom? Sorry to sound impersonal here, but I'm trying to stay anonymous.
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dancer86442 responded:
Sounds like your parent is still in denial. Keep a Recording device Handy. This will be Helpful for the Dr, too! Plus, Go w/ them to the Next DR Appt! Ask questions! Inform the DR about what You have heard & Observed. Most people w/ seizures have No recall of their episodes, so they Can't tell you what they experienced during the episode.

Educate Yourself & your parent! When I was First diagnosed, I thought I was 'cured' after 6 weeks on my medication. I quit taking my medication due to my assumption. Learned My Lesson the Hard way!

Yes, you need to tell them that you have noted seizures. You may want to start a daily Journal (more info in Resources) Plus, keep track of the seizures. There are several sites w/ 'Seizure Trackers' that you can download. Epilpsy.com has the best. I think. There are apps on some cell phones that can be used, too.

6 weeks & daily seizures? Yes, they need to see the DR, again, ASAP!! Our systems require 2-6 weeks for meds to build up in our systems. Medications need to be taken Same Time Everyday! If side effects are intolerable or seizures are still noted after that time, then they need to try a New med or Treatment. There are alternatives to medication or that can be used W/ medication to diminish/eliminate seizures. ie; Diets, Chiropractor (specialist), neurofeedback, Surgery, Yoga, meditation. Unfortunately, Every Treatment is 'trial & error' for each of us.

Do you think IF the DR told her/him to Quit driving, that they would? Do you think showing them the recording would convince them not to drive? I Hope so!

It will take Time, Patience, Support & Education to help you & your parent. You can find books on Amazon.com. Make a list of authors/titles & ask your local Research Librarian about availability of any books. Treating Epilepsy Naturally by Pat Murphy is Highly Recommended. Also, Visit epilepsyfoundation.org to see if there is a Live Support group in your area. If you have a Facebook account, there are Lots of support Groups that can assist you, too. I recommend National Seizure Disorders Foundation Community. The More you know, the better! But, knowing you aren't Alone, is the Best!

Hopefully, your parent will find control, soon. Took me & my Daughter 10 yrs to find a medication that worked for us. But, that is/was US! It isn't the Same for everyone.

Please keep us updated. Know we care. Hugs!

Love Candi
November is Epilepsy Awareness Month Wear Purple/Place a Purple light in/on home/businesses. Encourage others' to show Their support
 
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saxofone1 responded:
hi and welcome to the group,

You don't sound impersonal but like someone who is reaching/searching for answers or suport.

Candi has voiced most of my thoughts already. She is a wonderful source of information.

I was diagnosed with ep in '75. Like many people with ep, I have gone through many meds before I found the right combination of meds. As time moved on, that combination became ineffective and I had to search for new ones.

Patience is important for the patient and the family.

Thanks for being there for your parent. I wish you well on this journey.

angie


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