Wednesday, March 27, 2013

Tuesday, March 26, 2013 was Purple for Epilepsy Awareness Day. At nine years old Cassidy Megan founded the day five years ago. "I wanted to Have one day where everyone in the world could show support for people with epilepsy and teach people about epilepsy." Ten year old Cassidy shook hands with the Queen and last year Cassidy was awarded the Queen Elizabeth II Diamond Jubilee medal.

I started off my day by walking the dogs, exercise, sunshine and dusty air.

With a basket of goodies I received from The Center For Epilepsy and Seizure Control in BC, I strolled down to the Tea at the "Country Coffee Shop" with possible support group participants. I walked into the Coffee shop and it was full, a table of four was set aside for us, lucky, by the time the last couple arrived another table became available for the six of us. We were noticeable allwearing purple, except for Kelly who was wearing red, in fact I noticed a lot of red. Anyone walking in wearing purple got a pencil, magnet, bracelet, bookmark, of their choosing. Three of us have epilepsy, one of us feels isolated by her epilepsy and was excited about having a support group in Enderby. After the tea I walked about the town and handed out my goodies, to eager takers, in doing so I met more people with epilepsy or who have family or friends and would also be interested in a support group.

March 26TH happened to fall on a Tuesday which is Toastmasters night, I took the position as Chair for the evening with the theme "Epilepsy". I invited the new support group and three were able to come to the meeting. Everyone had some tone of purple on, I was sure John in his fedora with squares of purple paper in his hat band would scare off the guests with his hand shake of a purple, balloon stuffed glove. For the break we had cookies and purple corn chips with purple, beet dip. Heather thought a purple dip was a good choice, if we spill, it wouldn't be as noticeable on our purple clothing, as John dropped a lump of dip from his chip, onto Heather's skirt.

I reached back into my past as I researched famous people with Epilepsy, Neil Young was one of my favorite singer song writers. I quenched my throat with water, and took a deep breath, out of my throat came "Helpless", helpless, helpless, helpless, helpless......the song felt suitable for the day, the feeling you may have at loosing your drivers license, waking in the street, not knowing where you are, with strangers yelling at you as if you are drunk, pain in all your body, confusion, doctors voices spinning in your head, pharmaceuticals, no climbing of ladders, no taking of bathes..........Helpless.

I'll get over it, who can be sad when they are wearing purple flowery Tom canvas shoes, every one wanted my shoes, at a size 3 girls they only fit me.

Love you all!

Monday, March 4, 2013

The Epilepsy I Didn't Know I Had

When I lived in Abbotsford my Doctor retired, and the clinic she was in had a hard time replacing her, I was left as a walk-in patient. For a number of years I was having a strange event that happened infrequently, I can only describe it as a whooshing sensation coming over me and the feeling of being in two places, never going unconscious; afterwards I would be confused and nauseous. I decided to see a Doctor at the walk-in clinic about this, his response was “It must be God.” None of my female friends felt they had good care from him.

In 2010 my husband and I moved to Enderby, for Steve's employment. While speaking on the phone with my daughter one day I had an event, had to hang up and call her back. She asked if I had seen a Doctor and I told her about “The Abbotsford Doctor”. She is taking nursing and wanted to ask one of her professors about this, her professor said have your mother find a Doctor that will take her seriously.

I spent hours on the phone, it could have been days. No one in Enderby was taking new patients. I ended up on a waiting list, I was told it would be six months for a doctor in Vernon. In the meantime I did the Enderby walk-in clinic. At first the Doctor also didn't take me seriously, when I explained the previous Doctors comment, he became serious. I was sent to a Neurologist, he said he may not be able to tell me anything; I had an MRI and and EEG in March of 2011. I heard nothing, continued on with my life wondering and figuring no news is good news.

I was on the waiting list for one year to get in to see the new Doctor in Vernon. I started keeping a record of when I had an event, they seemed to be more frequent and stronger.

February 1st 2013, I went to bed and had a seizure, moaning, shaking, eye's rolled back, drooling, muscles all tight; my poor husband called 911. I didn't know what was going on, who these women were in my room, they seemed to be everywhere, wanting me to do something, and a man that was my husband would poke his head at me and say things. They managed to get me in my bathrobe and slippers, and walk me out to an Ambulance with flashing lights, and I remember saying “Where are you taking me? What are you doing? I'm scared.” I remember feeling sick, but relieved when we finally got to the hospital, and apologizing, for what I wasn't sure. I don't remember being poked with an IV, taped and plugged into a monitor which seemed to go off all night. I had another seizure two hours after the first one.

The hospital had the results of the MRI and it was good, they did more CT tests and they were all good. I appeared to be healthy. I was pumped full of drugs to the point I was in a fog, I could not see straight, or walk. One thing they did discover was that I had Wolff-Parkinson-White syndrome or WPW syndrome. It is the presence of an extra, abnormal electrical pathway in the heart that leads to periods of a very fast heartbeat. You are born with this, they didn't think it had anything to do with the seizures. I was sent home from emergency on February 4th, with a walker and no more drugs. I only needed the walker for a day.

My daughter Yolanda had some time off and was able to come up and help when I got home. She took me to appointments and worked on some sewing projects she couldn't do at home, I just sat and advised her; I really wasn't me when she was here. Anytime I get to spend with Yolanda is good time.

In the meantime my doctor was getting all these reports from the hospital. “What is going on with Karen, she is a healthy patient we rarely see.” Her concern is that I might go into a seizure and never come out of it, or choke on food if I'm eating, she put me back on the drugs. I complained, the drug has many possible side effects, I would like to keep my teeth. I would rather do natural remedies, but then you are threatened with “ will never drive again unless you take the drugs...”. She put me on 1/3 the dosage I was on in the hospital and I have to have blood tests to make sure the drug levels are okay.
I disliked the drugs so much I weened myself off of them. I feel so much better off the drugs, just scared I could have a seizure at any time.

To me February 1st was a nightmare along with the first few days in the hospital. To Steve it is very real, he was wide awake and scared; the person on the other end of the phone at 911, was very helpful. Keep her safe, make sure she isn't choking, put her on her side, if you have a pet put them in a room out of the way.

On Monday, February the 25th Steve took me to Kelowna were I had another EEG and a consult with Dr Adams the neurologist. I am so grateful to finally have a name for what has been going on with me. For about 15 years I have been having Focal seizures, or partial seizures. Those were easy to deal with they just slowed me down for brief periods; the Grand Mal's are another beast. I can't drive, take a bath, climb a ladder; if I don't take the drugs. I'm OK with not driving, convincing Steve to take a bath with me, could take some time. I never liked ladders anyway. Would it be possible to train Mattie to know when I was having a seizure?

The Doctors all want me to take the drugs, if one doesn't work we can try another. I don't know what to fear most, the drugs or the seizures. Knowing I have Epilepsy creates more mystery about what is happening to me. 60 to 75 % of people with seizures do not know why they have them. The drugs do not take care of the unknown cause. I have had some sensitivity to a variety of drugs in the past and the idea of trying yet another drug doesn't make me feel good, how will I react to another drug, it's not the 60's anymore.

I would love to hear from others with Epilepsy or family members and friends that are touched by Epilepsy. What do you do to control your seizures: acupuncture, medical marijuana, pharmaceuticals?