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Welcome to December!

  • Posted on December 1, 2011 at 8:28 pm

Welcome to December!
I would like to welcome everyone to December. This is a great month with Christmas and everything families getting together, celebrating the holidays and the New Year sneaking right around the corner. I would like to let everyone know how December affects me. You know the song “I wear my sunglasses at night” lol lol well that’s me cause I have to wear my sunglasses due to Christmas lights. Ya I know the nut in me is coming out again trying to joke around about my seizures, but hey what can you do you either have to make the best of it or be all down in the dumps. Believe me I do get down because this time of year I have to be very careful of going out, even in the apartment building I live in they have the flashing Santa on the door to outside and in the lobby windows. Therefore when going out I have sunglasses on and have to also close my eyes and be led outside lol lol lol….  Everyone that has the Christmas lights flashing etc. which makes it very hard on me, as well as others. I have some great friends tho that when I do go out they make sure that there are no flashing lights around me. Well other than camera’s but they have even asked people to be careful of their flashes because we all know that this time of year that’s another thing that people love to do. I am guilty of taking a ton of pictures too but I can never use a flash lol lol.

Please note that my joking about this (seizures) and me having seizures and epilepsy is only my way of dealing with it. By any means seizures is not a joking matter and is quite serious.

How about this December think about some other people with different health issues when putting your outside lights on and maybe for one year don’t have the flashers on?

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Seizures and Television

  • Posted on November 28, 2011 at 2:17 am

I would like for everyone to get a list together to warn others about television shows that cause seizures. I have started with making some television shows that have bothered me, they are the following :
– entertainment tonight,
– flashpoint at the very beginning
– any award shows
– there have been episodes of house
– the beginning of big bang theory
– the movie twister as well as others with a lot of flashes in them.
– sometimes the beginning of the hockey games due to flashing lights more for awards etc.
– also there are a lot of commercials

I will be adding more as I think of them and I hope that other people will also do the same. With enough people doing this maybe some television stations etc. will take things into consideration when doing shows and making commercials as well as shows.

I would love to be able to watch award shows just like anyone else.

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Explanation of Vicious Cycles

  • Posted on November 7, 2011 at 11:24 pm

I am not writing these for pity from anyone or to have anyone feel sorry for me but to try to have people understand how things are and how things interact with health issues

There are so many things that people do not realize when it comes to health issues making like a vicious circle. Last night I was laying watching television, and the tv made a loud sound. I inturn jumped and then that made the pain increase over another 10 times. As most of you know I have epilepsy and when my pain increases from the vulvodynia that sets off the seizures, but last night the pain increased so much that it actually made me sick to my stomache as well as it set off my I.B.S. I had taken my pain meds and had to try to take gravol to try to settle my stomache as well. When the seizures happen your body Is like dead weight therefore things just go from bad to worse. I today have been trying to recover from not only from the seizures but trying to get the pain back somewhat under control. I am on medication daily for the pain and I have never had the experience of being sick to my stomach over the pain. I have had my heart rate increase due to the pain and it also causes me to sweat profusely.

The pain increase set off my seizures and with that I couldn’t situate myself properly the way I usually do when sleeping. I usually have to sleep with 2 pillows between my legs as the pain is unbearable if I don’t and then the pain meds can not keep up with the pain to try to help keep the pain a bit down. Therefore a little thing like a loud noise can cause me to jump and tense up and that increases the pain. You don’t realize how many things can be affected by one health issue. I never did realize how 1 thing can affect others. Today I was out of it for over 12 hours and most people would say well why are you complaining.

If I was just sleeping it would be great, the thing is I WASN’T just sleeping I was having constant seizures due to the pain, When I finally came out of the seizures I had to immediately try to get the pain down a bit or the cycle would continue. I am sore from the seizures (which is normal after having seizures).

Trying to get the pain down a bit to where it normally is and have my system relax and stop my heart rate from being up as well as the sweating from the pain is NOT easy. Pain itself makes you tense, and when you have other things going on it makes it 10 times worse.

 

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Government Launches Review of the Registered Disability Savings Plan

  • Posted on November 4, 2011 at 1:26 pm

On Oct 23rd 2011 the Honorable Jim Flaherty announced a Federal review of the RDSP program. In this they have asked for people to comment on it. Below is the email I sent with regards to the RDSP review.

—————————————————————————————————

I am a family member of persons on Ontario Disability. First let me state that I think the RDSP is a great idea but I do and have seen the following issues;

1. A lot of people on disability do not have enough ID for banks to even open an account (seen this with BMO and my cousin). My cousin does not have a drivers license (can’t), does not have a passport, and still has the red/white ohip card. She does not have any form of “legal” photo ID. This needs to be addressed on many government levels. A nationwide government issues photo disability ID needs to be developed.

2. The vast majority of people on disability are afraid of losing or having their provincially provided disability cut for having the RDSP. Even though this would not happen, the government needs to understand one very crucial thing. The workers/staff of things like ODSP go out of their way to make people on disability afraid of being cut-off. This is not an exaggeration as I have seen this first hand with several family members and friends on ODSP. I know my cousin is very scared of opening an RDSP as the prospect of losing her ODSP frightens her to death.

3. People on ODSP for example don’t have money to contribute to RDSP and here is why. For people like my family living in Toronto – (courtesy CHMC Rental Market Reports – 2010)
Average Rent in Toronto
Bachelor Apt – $758/mth
1 Bdrm Apt – $926/mth
ODSP benefits for a single person: $930/month – That includes $464 for shelter.
**As of Jan 2012, my cousins rent for a 1 Bdrm is going up to $824/mth they say due to higher hydro costs etc… YET her ODSP does not increase to cover this. How can that be fair or right?

As you can see people on disability don’t even have enough money to get by each month. This is a MAJOR issue that needs Government attention.

Even though the RDSP is a wonderful thing to have, a lot of people on disability can’t and won’t take advantage of it for several reasons. Disability as a whole needs to be addressed as a National issue. I would request that the Honorable Jim Flaherty look at making Disability a Federal issue to be dealt with and removed from the Provinces. Each province deals with disability differently while the persons in Canada with disability are no different province to province. Our great Country is a Country that prides itself on helping other countries with their impoverished, yet we ignore our own that desperately need our help. Our disabled did not ask to be disabled nor do they wish to be disabled, yet we treat them like some blithe on our system. Unlike Welfare recipients our disabled have no choice BUT to be on assistance as most cannot work anywhere. I would like to put a challenge to our leaders – to ensure all people on disability in all provinces get at the very least the same amount of money as a Minimum Wage 35.5hr/wk worker gets and fix their health care and special diets/needs allowances. Is our government aware that because someone is on disability they are not entitled to the same health care as everyone else? This is backed up in facts, for example, certain meds that would help people in my family lead a more normal life they cannot get because ODSP refuses to cover it.

I applaud Mr. Flaherty for what he is trying to achieve, but I feel there are some glaring fundamental issues that need to be addressed before the RDSP program can work properly.

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Epilepsy and Holiday Awareness

  • Posted on November 1, 2011 at 7:25 pm

I am going to do the one bout “holidays” etc and how even tho its a great occasion for everyone people with Epilepsy will probably dred them. I know I do.. I would like to have any people that go to bars think about the lighting and strobe lights when they go into a bar. I know there are a lot of people that say “WHAT DO YOU EXPECT WHEN YOU GO TO A BAR” but seriously this is a medical condition that no one can help and certainly no one has asked to have epilepsy. Just because I have epilepsy doesn’t mean I have to stay at home and can’t go out and enjoy things the way everyone else does. I think that it is about time that bar owners realize that the lighting can cause people to have issues with your health. The more they know the better it is. They have to be aware of the risks people are taking and how many people can not go into their establishment so not only is it not fair to the people that would like to go into their bars etc but they are loosing money on loosing customers.

It is sad that if you bring it up as they will loose money they are more apt to change things.

Halloween: I really enjoy going out to bars on Halloween and seeing everyone dressed up in costumes. The problem is there are a lot of bars that have either flashing lights or the strobe lights on. I don’t like drawing attention to myself and asking them to turn the lights off or not to turn the lights on. I have to call ahead or ask some people that go to the certain bars if they have the lights on and if they are, that means I can’t go to the bar. Photo Epilepsy there are a lot of different variants of photo epilepsy. I have it so bad that even the flashing lights of a car can set me into a seizure. I am not saying or expecting people to go out and not have a good time, or to have pitty or feel sorry for me because that is the last thing that I want. I do not like pitty parties.

Please make people aware that even Halloween and some of the flashing lights are dangerous for others.

Really do you need the lights on strobe or flashing to have a good time when it can help someone just get out. I am asking people to make aware some bars or establishments in your area of these simple things that can give someone a night out and way to have a good time as well as you .

 

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Epilepsy Foundation asking everyone to “get seizure smart”

  • Posted on November 1, 2011 at 1:42 pm

Epilepsy Foundation asking everyone to “get seizure smart”.

According to the Epilepsy Foundation, nearly three million people have epilepsy in the United States

 October 26, 2011|Susan Bahorich | Reporter

It’s one of the least understood medical conditions – even though one in three people knows someone who has epilepsy.

According to the Epilepsy Foundation, nearly three million people have epilepsy in the United States, alone. As the foundation kicks off its campaign, it’s asking everyone to “get seizure smart.”

“I would feel disoriented, confused. Like this is not my home. That sort of thing.” For Melissa Bryan, that’s how it started. “The doctor said I was depressed. This is normal. You’re overloaded with things in your life, this is okay. He decided to give me anti-depressants. It didn’t go away. In fact, it got worse.”

Until one day. “I crashed my car in an automobile accident – it’s the first time I had a Grand Mal seizure.”

Bryan was taken to the hospital, where doctors finally discovered she had epilepsy. “I was glad I was going to get a medication that was going to stop all this confusion going on in my head, I wasn’t going crazy.”

These days she controls her epilepsy with medication and hasn’t had a major seizure in years. But she worries about the misconceptions of the disorder. “I think people are afraid or fearful about people who have seizures.”

So, The Epilepsy Foundation is trying to educate the public. “If you saw someone having a seizure would you know what to do? And, in many cases the answer is no,” said Lisa Boylan. “You absolutely, never ever put something in the mouth of a person who is having a seizure. Someone having a seizure will not swallow their tongue it is not possible.”

The Epilepsy Foundation says the best thing to do if someone is having a seizure is to move away any sharp objects or furniture that might be nearby.

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Epilepsy awareness month

  • Posted on November 1, 2011 at 1:33 pm

Today marks the beginning of epilepsy awareness month! What are you doing Today, November 1st, to show your support? Let us know!

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Gabapentin

  • Posted on October 19, 2011 at 1:33 am

I have been on Gabapentin now for many months. I know that one of the side affects is that it can cause people to gain weight. For me being on this medication to try to help with chronic pain, it has made my problem worse as the weight is causing more issues. I have bad knees as well so the extra weight my knees cant handle it. When I first started the medication I ended up going back to the doctor due to my eyesite was at first blurry and then for a bit until my system got used to it I couldn’t see things. It is known to also cause dry eyes, and every time I had been raised on the medication I had the side effect of the dry eye and blurry eye. When it first happened it was super scarey because I didn’t know what was happening to me.

Has anyone had any experiences like this or any other side effects?

Any other side effects please let us know as it could also help others.

 

Join the Forum discussion on this post

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Not Again!!!

  • Posted on September 30, 2011 at 3:10 pm

Well its happening again!!! My hair fell out a few years ago right after I got out of the hospital because of the glue they used to keep the electrodes on my head. When that happened I had to shave my head and get a wig. The wig I got, no one that didn’t know the situation knew it was a wig. I have had hair falling out again for a while now but lately for about the past week its been coming out in handfuls. I was told last night “ Yup you have a bald spot on the top of your head.” If it wasn’t for the Epilepsy Unit I wouldn’t have these other issues that I have been dealing with!!!!!!

I have chronic neurologic pain and now yet again my hairs falling out! I am so sick of the nonsence and wondering when the next thing is going to happen………. I try to think of myself as being lucky but come on theres only so much one person can take and I have had it. I am at my breaking point. If anyone has had the problems with the glue or the remover hurting and killing their hair please feel free to share your story with me and maybe this will also help other people.

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Battle of the Blades – Supporting Epilepsy

  • Posted on September 26, 2011 at 2:10 pm

I was watching Battle of the Blades last night and saw that Boyd Devereaux is Skating to support Epilepsy Huron-Perth-Bruce. It is nice to see that someone is skating to help support Epilepsy so whoever knows anyone who has Epilepsy or seizures please go to the site and vote to keep them on. The following link is where you can go to vote and show support for them to keep them on the show so they get the money that is donated if they win. http://www.cbc.ca/battle/index.html but it looks like the voting is done for this week. Please remember to look it up and to vote as to raise awareness and help donate to Epilepsy Huron- Perth- Bruce.

This season is a sad way to start with the death of Wade Belak as he was going to be in this seasons Battle of the Stars. The hockey players this year are going to have a hard time keeping up with the last season as they were fantastic skaters and did amazing things.

Please remember to vote for Boyd Devereaux and his partner at http://www.cbc.ca/battle/

About Epilepsy Huron-Perth-Bruce
Epilepsy Huron-Perth-Bruce is a health organization dedicated to promoting independence and optimal quality of life for children and adults living with seizure disorders. They raise awareness of epilepsy, conduct research and offer information, support services, advocacy and education.

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