Sunday, November 30, 2014

Turkey and Christmas fun



It is so much fun to not have to do HOMEWORK this weekend. I do remember having to write papers this weekend. So much more fun watching movies and writing Christmas cards.  Had a blast emailing cards and deciding who would get a hand written card. I love getting them!

Ideas to prevent Seizures at Holiday



Epilepsy Ireland News

19-12-2011 | Preventing Seizures over the Christmas Holidays : Brainwave’s 12 Top Tips

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Christmas can be a hectic, exciting and stressful time for everyone and people with epilepsy are no exception. Every year at the beginning of January Brainwave staff receive some calls from people who have had seizures over the Christmas period. For some it will have been the first ever episode and they will be concerned about whether they may go on to become diagnosed with epilepsy in the event of a subsequent seizure. For most though it will mean a recurrence of seizures within the context of diagnosed epilepsy. Often in discussing the events leading up to it can emerge that a range of trigger factors may have been at play to reduce the person's seizure threshold. With this in mind we are highlighting here some ways of reducing the risk of breakthrough seizures over Christmas and trying to address some of the questions people ask.
 1) Start early, Plan ahead - last minute rushing around in the run up to Christmas is the norm for many people but can be very stressful for someone with epilepsy. You can reduce the stress factor by being organized and breaking the tasks up into manageable pieces that can be spread out over time. Keep lists and try to focus on doing a certain amount each week, whatever is feasible. Shopping online is increasingly popular and can help reduce the need to rush around the shops. This should mean you don't have to overdo it at any point and give you free time to enjoy the atmosphere without the pressure. 
2) Transport and travel - if you are unable to drive currently this may affect how and where you shop. You may have been used to going about doing all the shopping for gifts and trimmings before. Now you may need to consider whether to seek help with lifts from others or whether you can actually manage to get the groceries, gifts and the Christmas tree in one outing. Consider your energy levels and pace yourself. Public transport can be in great demand at this busy time so try avoid rush hour in order to get a seat. Be realistic about what you can undertake and if someone offers to get something for you consider accepting the offer. Whatever makes life easier and less stressful is welcome. Shopping locally or online again can reduce the transport demands.
3) Skipping meals- it might be tempting to pass by when you see long queues at restaurants when shopping but don't be tempted to skip meals. During the holidays our patterns can alter so it's good to ensure you get to keep to a regular pattern of eating.
4) Take your medication as normal. Ensure you have sufficient supplies of your prescription to last the holidays.
5) Sleep debt - Regular sleep patterns are important for people with epilepsy - over the holidays these can change due to the late night festivities or morning lie-ins. If you are planning a late night try to ensure you are well rested prior to going out and take your medication as normal. If possible have some extra sleep the following day also. This will reduce your sleep debt (the amount of missed sleep you owe yourself).
6) Relaxation - Take few minutes of quiet time each morning and evening to listen to a guided visualization, soothing music or do meditation - whatever method works for you to unwind and take a break from the cares of the day.
7) Alcohol - whether at parties or in the home everyone is potentially more exposed to alcohol over Christmas. Your doctor may have advised you on what is a safe limit for you. Stick to this advice, keep your intake moderate (typically 1-2 units) and avoid binge drinking. Don't be afraid to say no to another one - if your friends have your interests at heart they won't force the issue or encourage you to drink more than is safe for you. Consider having shandies instead or non-alcoholic beers and wines as options. Remember you don't have to "keep up" with everyone else to enjoy yourself - you have the right to choose not to put yourself at risk.
8)  Other Stimulants and street drugs - whether we are talking about high caffeine energy drinks or any kind of street drugs these are all associated with increasing seizures and must be avoided.
9) Christmas lights and New Year Firework Displays - while flashing light is a trigger for a small number of people with photosensitive epilepsy the Christmas lights sold in stores here should all meet the required health and safety standards for flicker. Risk factors for photosensitive epilepsy are flicker from 5-20 flashes per second (hertz) glare and strong contrast, and saturated reds. Christmas lights circuits should flicker at about 1 hertz (flash per second). However, there have been a few anecdotal reports of people who feel they were affected by faulty lighting. Also if several circuits are combined a photosensitive effect could be generated. If it is not possible to avoid the lighting the simple measure of covering one eye with one hand should be sufficient to prevent a seizure on exposure to the flashing lights. Firework displays are live events and it is difficult to predict the flash rates they might generate. As fireworks are often held in darkness and the contrast could enhance the photosensitive effect. Again the measure of covering one eye with one hand is advised (closing the eyes is not effective as light can penetrate the skin of the eyelids).
10) Excitement - Particularly for the children the anticipation of Christmas can cause huge excitement which although it seems like fun is felt by the body in a similar way to a stress reaction. Keeping the atmosphere calm and routine stable can help prevent overexcitement and sleep problems.
11) Family Support (or lack of it) Christmas is a time when many people expect to spend more time than usual with family and this can have both it's joys and downsides. If your family are supportive that is a great bonus but if they have difficulties accepting epilepsy it can place a strain on relationships. If you lack a supportive family or network of friends this can leave you feeling isolated at a time of great emotional expectation. Consider in advance how you will obtain support to help you through the holidays whether through talking to your GP, joining a support group, getting referred to counselling, or calling a telephone helpline like the Samaritans. Don't be afraid to ask for the help you need to cope.
12) Expectations - Keep your expectations for Christmas realistic. If you hope for perfection the likelihood is you will be disappointed at least some of that time. There is a huge emotional investment we can make in wanting Christmas to be a certain way and the reality may be less than perfect. If we can be flexible around this we can accept that the images we see in TV and advertising are idealized and that the rest of us live in the real world we will be taking a healthier approach. If we could be content with a "good enough" Christmas we might actually be able to relax and enjoy it more.

Brainwave wishes all it's members a safe & enjoyable Christmas & New Year 


Traveling at Christmas



Christmas, Family, & Travelling with Epilepsy


Yes it is October and I am already talking about Christmas and the upcoming Holiday Season.  Last year, inChristmas, Airplanes, & Epilepsy, I talked about making my annual trip to see my family.
I have just bought my tickets and am excited to go see my family once again!  Some people may not always feel that way, but I feel a strong desire to be with family over Christmas.  It has also been a whole year since I have seen them last.  I would actually like to fly back and see them more often, but my current budget won’t allow that.
My trip last year was relatively uneventful, so I will attempt to prepare myself for this year’s flight in the same way.  The mp3 player that I usually use to listen to music while flying has died since my last flight, so I will have to purchase a new one before my next trip.  I will have to make sure that my Medic Alert information is current.  I will also write down some useful information in a notebook for the flight attendant if something happens.

Epilepsy Awareness Aluminum Ornaments






I found a great link at cafepress which has Epilepsy Awareness Ornaments. What  a great idea!

Monday, November 24, 2014

Gratitude




Community Corner: November 20, 2014
Thursday, November 20, 2014
As the holiday season approaches, it may be hard to get in the holiday spirit if you or a loved one are struggling with the challenges of epilepsy. You may not feel well enough to participate or feel emotionally overwhelmed, unhappy or down. Is there a way to change this?  
Often, how we act influences how we feel and how we feel contributes to how we act. What if we changed how we act? Instead of thinking about what is not going right or what bothers us, consider focusing on what is going right or what we do have. Giving thanks for what we have is one way of changing how we feel and act. In other words, use gratitude to help your attitude!
What are some things we can show gratitude for?
  • Family - who have shown support in good times and bad. Epilepsy is a family affair. It’s as hard on family members as it is on an individual, just in a different way.  We don’t say thank you often enough to you. Or maybe we take frustration out on you.  Sorry for that and thank you for being there!
  • Friends and acquaintances who may fill a void for people without immediate family.  And who support families without question or hesitation. You may not realize how important the little acts of kindness are. They mean so much.
  • School nurses, teachers and other school personnel – your impact is immeasurable. How you act and treat students with seizures lets others know what to do. Helping a student reach their potential and not let epilepsy stand in their way is even more important. You are role models for your students and other adults. Thank you!
  • People who help during or after a seizure- by holding hands, offering reassuring words, keeping us safe, or calling for help. It’s so important to come to after a seizure and see a kind face and hear kind words. Ambulance drivers, emergency medical technicians, emergency room staff – people with seizures hate to see you, but are so thankful that you are there.
  • People who give us rides if we can’t drive, do errands for us, or go with us to appointments. This can take a lot of time and we realize you don’t have to do it, but you do. Thank you.
  • People who let us vent and cry on a bad day, or laugh and celebrate a day without seizures. Just being there is so important. You don’t need to fix things, just listen and be there.
  • Counselors and caregivers. You give so much to children and adults with seizures. You are on the “front line,” helping us learn life skills. Or just helping us at home on daily activities. What would we do without you? Thank you!
  • Health care professionals – the doctors, nurses and other health care professionals who see us at our most difficult times and help us get stronger. Thank you for listening and trying to make sense of an unpredictable and confusing illness. Don’t give up when a treatment isn’t working. We need you to stick with us and help us find a better treatment. Thank you for pushing us too – to not settle for the “status quo” and for encouraging us to take steps that may be outside of our comfort zone.
  • Researchers – you continue to seek answers to what causes epilepsy, what is going on in the brain, how to stop seizures and other problems that may occur because of epilepsy. Thank you for doing this! Thank you to the researchers who develop new therapies, devices, and other kinds of help for people with epilepsy. It’s an exciting time with so much potential. Thank you for your new ideas and willingness to try new things!
  • People who educate and advocate for epilepsy and seizures. Do you know how important you are? Your willingness to speak up and make a difference is desperately needed and appreciated! You truly make a difference by raising awareness about epilepsy so it’s no longer hidden from public view. For raising funds for care and research and for fighting to end discrimination and improve access to care and all aspects of life for people with epilepsy and other disabilities.
  • The Epilepsy Foundation and all the organizations – nonprofit, state and federal – that support people with epilepsy. A huge thank you for all you do.  Don’t stop. There is so much more to do.
  • People living with epilepsy – thank you for your courage, patience, and strength. You teach so much by example.  You are an inspiration to all!
Thank you for being part of the epilepsy.com community and sharing your support with so many.
With best wishes and gratitude,
Patty Osborne Shafer RN, MN
Associate Editor/Community Manager
Authored by: Patricia O. Shafer RN, MN on 11/2014

Saturday, November 22, 2014

Fun Fun fun



I have had a great birthday week! no seizures and lots of fun. Monday we were going to the movies but 
We had Tornado warnings here so we cancelled. It was wild here. We had 67 mph winds! 
Tuesday I got to go to dinner. Wednesday we had a party. Thursday We had a party at bowling for Thanksgiving and my team mates gave me the fruit that I asked for! wow I was not expecting a tray so big.
Friday had fun at the book club. Fun fun week.

Too fun someone sent me a card with all of the changes in the past 50 years it is amazing the changes in just the past 25 years!


Goals
release 70 more lbs
get a home in San Marco
get an electric bike
get a basset hound
time for romance
time for abundance
time for being seizure free



I did start looking back and starting giving myself credit for what I have done
1. went to college on my money , loans, scholarships
2. 18 years as a respiratory therapist
yes not the most stress free job! lol
3. did buy a home
4. taken care of Dad after his strokes from 7 years
5. kept my friends some for 25 years
6. keep my word






Monday, November 17, 2014

National Walk for Epilepsy


There is tons of info on this page about the walk! you can donate if you can't go.


http://walkforepilepsy.org/event-info



We are introducing a new online fundraising tool this year and as with any new thing, the first time can be a little confusing. We’ve created video tutorials to help walk you through the process. Personal fundraising pages are vital to the success of your efforts and we strongly encourage you to utilize all they offer. If you have further questions about how to register or personalize your page, please contact your Team Captain or our National Office at WalkInfo@efa.org.

Saturday, April 11, 2015
  • T-Shirt Pickup: 7:30 a.m.
  • Opening Program Begins: 8:30 a.m.
  • 5K Walk Begins: 9:00 a.m.

Thursday, November 13, 2014

Gratitude




It is going to be my birthday next Wednesday. The big 50! I have been thinking and I am starting to give myself a lot more credit for things I have done. I did finish college. I did get a degree. I did work in respiratory therapy and the more I think about it I am not sure how I did it. I would have seizures call in and go to work the next day. I was able to work night shift the whole time. I have been able to learn the computer and learn how to do blogs and newsletters. I did buy  a home but it was too much for me. I want a townhouse or condo next time. I do want a bassett hound again. I had a dog named Sam that I got from the SunCoastBasset Hound Rescue. http://suncoastbassetrescue.org/ He was the best. He could tell I was going to have a seizure and was not trained to do so! I think it was the change in smell from the hormones. He would not leave me! He was really funny also. He LOOOOVED Blondes. I am not one. He loved women so I had no problem taking him to the vet. He thought it was a singles bar. lol. Unfortunately, He ended up with cancer and died. It was very hard. Lot to think about today. Friend of mine had just had emergency heart surgery. Everyone is in shock! Makes you think about what is important. 



Saturday, November 8, 2014

Tie between Epilepsy and Hormones

Here is a great article about the tie between Epilepsy and Hormones. 
Yes it does exist! Time for the Doctors to pay attention.

THURSDAY, Oct 14th 2010

Epilepsy and Your Hormones

authored by Sheryl Kraft

Epilepsy had always been a topic that was very foreign to me—until it hit a bit close to home.
About five years ago, when she was 52, my sister found out she had epilepsy. She was at work and had just hung up the phone with me after a brief conversation. She remembers feeling a bit "funny"—and the next thing she knew, she woke up in an ambulance, confused and frightened. Lynne had suffered a "grand mal" seizure, the most common type, falling from her chair to the floor, her limbs at first stiffening, then jerking wildly.
Her doctors were not able to pinpoint the exact cause of her condition and I'm happy to report that since the initial episode, my sister has been seizure-free with the help of the two antiseizure drugs she takes each day.
Could it have been set off by stress? Perhaps. But we all have stress in our lives—yet we all don't have epilepsy. Could it have been the change of hormone levels that occur around this time? Perhaps.
One thing that is known for sure is that epilepsy affects—and is affected by—hormones. Estrogen andprogesterone, with all their fluctuations, can have a profound effect on seizures, either increasing their frequency and/or changing their patterns.
And around midlife, hormones are changing at lightning speed. That's why it's so important for women with epilepsy to be aware of these important facts and keep an open dialogue with their health care team even before menopause hits. Here's what you need to know, from birth control through to menopause and beyond:
  • Birth control: If you use it, be aware that some antiepileptic drugs (or AEDs) can make your birth control less effective. Uh-oh … unintended pregnancy. Conversely, some birth control pills can mess with your AED levels. Uh-oh … uncontrolled seizures.
  • Pregnancy: If you have epilepsy and want children, you can have them. But it's important to let your health providers know in advance. Your epilepsy meds may need to be adjusted to make sure you are getting consistent levels.
  • Menopause: It may come three to five years earlier for women who experience frequent seizures. Menopause may also change the frequency of your seizures; about 40 percent of women experience their seizures worsening. 
  • Hormone replacement therapy (HRT): HRT can also increase seizure frequency. Is it worth it? Discuss your options with your health care provider.
  • Bone density: Your bone density can be negatively affected by long-term use of some AEDs, potentially increasing your risk of fractures, osteoporosis and osteomalacia (a softening of the bones due to a lack of Vitamin D). It's important for all women to have bone density monitored regularly and practice other bone-strengthening measures, like weight-bearing exercises and intake of calcium and Vitamin D—and it's even more important for you.
  • Sleep and stress: Too little sleep and too much stress can trigger a seizure. Make sure you get enough—and not too much—of each.
  • Alcohol: Drinking alcohol may worsen seizures.
  • Other medications: Taking other meds (as in the case of birth control, mentioned above) can interfere with the levels of AEDs in your body. The same goes for taking AEDs: They can alter the levels of other medications you take for other conditions.
  • Exercise: Use it! It can help counteract the bone loss that may come with medication. It can also help reduce stress, keep your weight balanced and keep your energy levels at their peak.

Thursday, November 6, 2014

http://www.candlelightconcert.org/


Here is a link to a great website showing a concert series to help Epilepsy Awareness. amazing what you can find online!

Candlelight Concert Series for Epilepsy Awareness

The Candlelight Concert Series for Epilepsy Awareness is a concert series in Pennington, NJ designed to raise awareness about epilepsy. It's grown out of a very popular house concert series and is now held at Trinity United Methodist at 1985 Pennington Rd, Ewing NJ. When you purchase your ticket using Paypal below, you will be added to the list; no physical tickets are printed or sent. You can bring you receipt to be safe. All shows are general admission. For more on this series, check out this article from The Times of Trenton here. The Epilepsy Foundation of New Jersey will be on-hand for most of these events to provide information and accept donations.

Wednesday, November 5, 2014

repost of Catamenial Epilepsy do you have it


Catamenial Epilepsy – Do You Have It? | August 7, 2011

 
 
 
 
 
 
19 Votes

Do you notice that your seizures worsen just before your period…or during the first few days…or at mid-cycle? You could have “catamenial epilepsy,” or hormone sensitive seizures, a tendency for increased seizures related to your menstrual cycle. The causes of catamenial epilepsy are not totally understood. It could be an imbalance between your two female sex hormones, estrogen and progesterone, or you may not be producing enough progesterone during the second half of your menstrual cycle. It is also possible that the amount of antiepileptic drug (AED) circulating in your bloodstream may decrease before menstruation.
Women with partial epilepsy, especially temporal lobe epilepsy, seem to be most likely to have catamenial epilepsy. And before puberty, girls may have recurrent clusters of seizures each month until puberty, when the seizures become catamenial.
Some theories have been suggested to explain why the menstrual cycle should affect epilepsy, including cyclic changes in the immune system. It has also been suggested that, rather than the epilepsy itself becoming worse, women’s perceptions of epilepsy frequency before a period may be due to dramatic mood change or premenstrual tension. (Sound familiar?)
One of the main theories, however, is that seizures around periods may be due to fluctuations in the two major reproductive hormones, estrogen and progesterone, which rise and fall in the menstrual cycle. The effects of those hormones on brain excitability are at the root of this theory. Estrogen seems to be the “bad guy,” lowering seizure threshold, while progesterone is the “good guy,” offering more protection against seizures and increasing seizure threshold.
And it has been shown that hormones directly change EEG activity. For example, in one study, an IV injection of estrogen resulted in clinical seizures in 4 of 16 women with epilepsy and activated EEG epileptic-type activity in 11 of these women. An IV infusion of progesterone decreased this type of activity temporarily in 4 of 7 women with partial epilepsy.
But the question remains, do you actually have catamenial epilepsy or is it stress, lack of sleep or even the effectiveness of your meds?
To start with, it’s a good idea to keep a menstrual diary, charting your seizures as relative to the stages of your period. Do the seizures occur more often before your cycle begins…during the first few days…or at mid-cycle?  Next, you might want to have your basal body temperature and your serum hormone levels checked.
And if you do have catamenial epilepsy, don’t despair. Just getting diagnosed is a positive. Then you can actually do something about it. And there are several options available.
Extra medication in the week before menstruation in the form of an “add-on” AED such as clobazam is the most common method of treating seizures around the time of menstruation.
Other methods include treating catamenial epilepsy with the contraceptive pill in efforts to achieve a better balance of hormones.
Another theory is that seizures around menstruation are linked to premenstrual water retention, which upsets the normal balance of the anti-epileptic drug in your body, thus making it less effective. For this reason, doctors have commonly treated catamenial epilepsy with diuretics to reduce fluid.
Then there’s hormonal therapy — such as progesterone. When taken in capsule form on a cyclic basis, it may successfully reduce catamenial seizure risk in some women. Overall, natural progesterone is better tolerated than synthetic agents, but no evidence substantiates whether one is more effective than the other. I think for many, it might be may be a case of individual preference.
But any way you look at it, having your period and all its accompanying aches and pains is bad enough. When seizures become part of the mix, it’s like adding insult to injury.
That’s where a doctor comes in. My preference is a female endocrinologist. (Sometimes, men just don’t get it.)
The bottom line is: there’s no reason to live in fear or misery. Get yourself diagnosed and you could well be on your way to a solution.

Author

Phylis Feiner Johnson

I've been a professional copywriter for over 35 years. I've also had epilepsy for decades.

My mission is advocacy; to increase education, awareness and funding for epilepsy research.

Together, we can make a huge difference. If not changing the world, at least helping each other, with wisdom, compassion and sharing.


Epilepsy 101

Epilepsy is the 4th most common neurological problem – only migraine, stroke and Alzheimer’s disease occurs more frequently.  There are many different ways to explain how often a disease occurs. Here’s a few points to consider.

What do the terms incidence and prevalence mean?

  • The incidence of epilepsy looks at the number of new cases of epilepsy in a given year or period of time. It’s often given in a ratio such as ‘x’ out of 1,000 persons develop epilepsy each year.
  • The prevalence of epilepsy looks at the number of people with epilepsy at any given point in time.  This includes people with new onset epilepsy as well as those who have had epilepsy for a number of years. This is usually given in a total number, such as ‘x million’ people, but can also be given as a ratio.
  • The difference between these numbers is how they are used and what they represent. To show the number of people affected right now, usually the prevalence number is used.  
  • To show how often epilepsy occurs, the incidence number is used.  These numbers are different because not everyone has seizures or epilepsy for the same amount of time. Some have epilepsy that goes away, others may live with epilepsy all their life.  
  • The incidence number also tells how many people in a certain group have epilepsy. For example, these numbers can show how often epilepsy occurs at different ages, in different ethnic groups, or in different regions.

What is the incidence of epilepsy in the United States?

  • The average incidence of epilepsy each year in the U. S is estimated at 150,000 or 48 for every 100,000 people.
  • Another way of saying this- each year, 150,000 or 48 out of 100,000 people will develop epilepsy.
  • The incidence of epilepsy is higher in young children and older adults. This means that epilepsy starts more often in these age groups.
  • When the incidence of epilepsy is looked at over a lifetime, 1 in 26 people will develop epilepsy at sometime in their life.

What is the prevalence of epilepsy in the United States? 

There are many different estimates of the prevalence of epilepsy. These numbers vary depending on when the studies were done, who was included and a host of other factors.
  • The number of people with epilepsy, using prevalence numbers, ranges from 1.3 million to 2.8 million (or 5 to 8.4 for every 1,000 people).
  • The estimate currently thought to be most accurate is 2.2 million people or 7.1 for every 1,000 people.
  • However, higher numbers of people report that they have active epilepsy, 8.4 out of 1,000 people. These numbers are even higher when people are asked if they have ever had epilepsy (called lifetime prevalence). 16.5 per 1,000 people reported that they had epilepsy at some point in their life.
Authored by: Patricia O. Shafer RN, MN | Joseph I. Sirven, MD on 10/2013
Reviewed by: Joseph I. Sirven, MD | Patricia O. Shafer, RN, MN on 3/2014

    Monday, November 3, 2014

    November Monday

    Wow it is our month. the weather is amazing in Florida. it is why the snowbirds come to Florida.  I did well today was able to get to the YMCA and do the water aerobics class. I am really happy about that. no problems. Here's to a happy week

    Saturday, November 1, 2014

    ooooppsss

    I broke my medicalert chain I do have a back up with a medic alert watch. I found out you can put the medic alert app on your smart phone too.
    http://www.medicalert.org/product/catalog/medical-ids

    They have an amazing variety of choices and prices. great way to make yourself safer