Local woman overcomes fear to shave head for awareness
Thursday, Oct 24, 2013 10:13 am
The path for Airdrie’s Allison Prentice to get to the point where she is comfortable to shave her head, in support of the Epilepsy Association of Calgary, has not been an easy one.
Twelve years ago, Prentice, 48, suffered a brain infection, which developed into severe epilepsy causing seizures that were so bad, and occurred so frequently, that she avoided going in public.
“I would wait until nighttime to walk the dog,” she recalled. “If I had to go to the store, I would wait until it was dark.”
Prentice said she was fearful of having a seizure in public, which would frighten others and leave her embarrassed because her seizures would result in her falling to the floor and the seizures could last up to a half an hour.
“For kids to see it, I think it would be terrifying,” she said.
A grand mal seizure – the type of seizure Prentice suffers from - debilitates the patient by a loss of consciousness and violent muscle contractions during the seizure.
In 2005, Prentice had brain surgery to remove a portion of her front left temporal lobe in an effort to minimize the seizures.
However, because her seizures come from both the left and the right side of the brain the surgery had little impact and left her with a large scar and a large dent in the left side of her head.
She said the surgery has impacted her short-term memory.
“I can remember things that happened 30 years ago but I have to take notes on things that happened two weeks ago,” she said.
“Since the surgery, I’ve hid the scar with my hair, so this (head shave) takes guts.”
Prentice’s seizures come in clusters every four to six weeks, when she is in the midst of a cluster she knows she will have seizures off and on for several days.
“The hardest part of all this was missing my daughter’s grad out of fear,” she said.
Prentice was in the midst of a cluster when her daughter graduated and suffered a seizure just two nights before the graduation dance.
Five years ago, Prentice began an experimental drug called Fycompa and she said it has changed her life.
“I feel like an almost new person,” she said, adding she hasn’t had a grand mal seizure in the five years she has been on the medication, though she still has the less severe petit mal seizures.
The Federal Drug Administration in Canada approved Fycompa earlier this year.
In 2012, Prentice had surgery to implant a vagas nerve stimulation (VNS) device, which is used to try and stop seizures from coming on.
The VNS device was implanted in Prentice’s chest and sends small electrical signals to the vagus nerve and up into the brain. The implant sends this signal every five minutes and Prentice has a magnet she wears around her wrist that can be used to activate the device if she feels the onset of a seizure.
She said she doesn’t really feel the electrical stimulation but she does lose her voice when the VNS goes off.
“I’ve got (the stimulation) down to every five minutes so when I’m in line at the bank or at Safeway, I know how to time it,” she said.
Part of that new lease on life Prentice is enjoying due to the Fycompa and VNS is her participation in the sixth annual Bare Naked Noggins Head Shave in support of the Epilepsy Association of Calgary (EAC).
On Nov. 7, in the main retail atrium of Bankers Hall in Calgary Prentice will have her golden locks shaved off by a firefighter and one of the Hot Stuff Calendar models at noon.
“I was happy I decided to do this but as it gets closer I’m wondering why I did,” she joked.
She said the event is a fundraiser but it is also about increasing awareness and teaching people what to do when someone has a seizure.
“I wanted people to know about this and not be scared of me,” she said, adding she is worried the indent in her head from her surgery will frighten people and that she has found some hats and scarves she is looking forward to wearing.
Prentice said before her diagnosis and treatment of epilepsy she wouldn’t know what to do if she saw someone having a seizure. She now participates in EAC presentation where she acts as the person having a seizure and teaches participants of seizure first aid.
“I just don’t want a kid or adult to be ashamed to go out,” she said.
“Even if I was to have a (grand mal) seizure I don’t have the shame I used to have.”
Prentice said she hopes to raise $500 for the head shave and has already received close to $200 in donations.
“I think it will end up being well over $500,” she said.
To learn more about seizure first aid and to donate, visit www.epilepsycalgary.com