A Short Update with Good News

This is going to be short as morning comes quick.  I use to be one that if going somewhere tomorrow would wait till the day before to do what I had to do.  A lesson learned, .... here I go again 'slow and easy does it' and no more multi-tasking for this girl.  That is if I don't want disaster to strike.

Tomorrow is the beginning of a week of getting ready for a treat for the long weekend for those here in Canada.  Glens birthday is coming up and so is his retirement. Our oldest daughter has got us all tickets to the football game, a good supper after and spending the night in Regina with early a.m. breakfast.  Wow, talk about excitement in this house is building, as football is a great talked and watched game here.

Stress and excitement have similar effects, so everything must but 'slow and easy' during the next few days.  It will be nice to get away and really looking forward to it.  These two things put together can be a trigger if we let them.  If this is a trigger for you would love to hear your comments.  We can help each other and know we are not alone.

Hope all in Purple Power land is keeping well.  Have lots of fun and keep your spirits up. 
Keep Smiling
Julie

Getting to Know Our Brains (#3)

Now that we are getting to know our brain a little more, the next step and probably the hardest after storing all the information is to 'Retrieve' it now, right?  Does this ever happen to you?  Sometimes we put things away where we are sure they will easily be found and when it comes time to find them that place just isn't there.

Have you ever noticed too that when someone asks you something where an answer is needed quickly and immediately no matter how hard you try it just isn't there.  It is right on the tip of your tongue, you can see it or it can be a word you use all the time and should be as easy as getting out of bed in the a.m. but it just isn't there.

The harder we try to think of the word needed the further away it goes.  Try forgetting about it for a minute and it will be right there in front of you.

What the doctors refer to this is 'short and long term memory spam'.  Some have one and not the other.  This can happen over time with both the number of seizures we have and the meds that are added to our system.

In time some of long term may come back and like myself it is almost competely wipped/gone/zip/nil.  Since being out of the foggy world I was once in the short term is now there, sometimes having to wait a minute or two.  That part I can handle.

This last and final job of the librarian/brain is the one that irritates us the most at times.  Sometimes too we think we are loosing it.  Don't worry, as you are far from alone.  Actually, when you look around and hear other stories similar to your own you can find you are a lot better off than you thought.

Don't worry, that will only make it worse,

Keep smiling

Julie

Getting to Know Our Brains (Brain Fog) #2

 Right now, the brain is in a terrible foggy world. It is impossible at this point to try and store anything in the proper order.

This part is about 'STORAGE'.  We no doubt know all about that and how hard it is to try  storing things in our brain for any length of time, right?  Storage our Librarian has to do a lot of.  Store the books in the correct order, in the correct spot, on each shelf, day after day.  That is just one of the jobs of a Librarian.  Now what what if that storage area goes on strike!!  Relating this now to having Seizures and how should that area of our brain be affected, what would happen.  You can just imagine trying to find something you need quickly with no one there to help you.  It would be next to impossible.  What happens is not your fault, it is not a disease or something your partner can catch.  It has just happened, for whatever reason.

What does this Storage look like in the person with Epilepsy, from an out-siders view point?  It may look like the information given in the #1 section/attention, has gone in one ear and right out the other to some.  You had remembered something about your 'friend Joe' from that previous sentence. In the Attention section, he would of been right there in front of you. Now you may not be guaranteed to remember even that, if there are difficulties with the storage part now.  To some people it will appear as if the memory has completely gone.  To others looking on, it may appear as if you have suddenly become deaf.     

Believe me this is right, in fact doctors even wanted to set me up for surgery and when asked if the hearing aids after the fact would then help any, he told me probably nothing would....so why have the surgery, why have hearing aids.  It didn't take long until I figured though that what others saw from the outside and heard from the outside, was one big blur, or mixed up jumbled up lot of words.  A big 'No' to the surgery was given to them and also to the hearing aids (although my husband did buy me one but it broke) :(smile:)  What it really was, that deep fog my brain was in after someone said something to me along with the very short memory that came with it.  Every word they said made perfect sense while they were speaking, but the minute they stopped, I was lucky if I recalled one word.  That one word would be put in a sentence of 6 different subjects.  Kind of difficult for the person on the outside looking in right?

Slow and easy does it.  No longer try and multi-task, that just makes matters worse.  We can find ourselves different ways to recall things and put them in the proper order in our brain.  We don't want that Storage section of our brain to go on Strike any more!! 

Take care and keep smiling as it does get better

Big smiles to everyone out there in the Purple Power land.  The fog has lifted and slowly the short term came back.

Julie

Getting to Know Our Brain (Bain Fog) #1

This really meant something to me as at one point of my seizure history Brain Fog was all I knew.  On one hand it was nice as I was like an angel floating around on another planet and didn't know or could do anything.  On the other larger hand, all those years I missed out on and can not recall a thing.

Now that I am out of it, I dug deep within myself to try and figure what it was really like.  What had happened anyway.  I read all I could find and also had several solutions of my own of what happened. 

Each part of our brain is given different jobs to do and believe me none of these are easy.  If these are not done right or get confused in any way then that section just decides to 'go on strike' so to speak.  Lets pretend it is a librarian.

Three main areas they attend to are: Attention and encoding, Storage, and Retrieval.  I use to be a librarian in school and this is the best way to describe the jobs.  It now depends on what kind of Epilepsy you have and which section of the brain is affected. 

Attention - Let's start with this and we can go into the other two later.  One of the things is namely that most people with Epilepsy have is short attention span.  Give the section of the brain that looks after the attention and encoding epilepsy and it can greadly reduce the attention speed and rate of information processed.  Have you ever noticed that if you can only work at a slow steady pace things go just as well?  Maybe even better?  Speed it up a little, or start multi-tasking specially over an extended period of time and it can look like you are hard at work but at the end of the day, not much has been completed or accomplished.  One good saying here for you to hang on to is 'Slow and steady wins the race!'.  By doing this the brain will not get the chance to get 'spaced out/confused/fogged up' or anything else it could have in mind for you.  YEH!!

This past week was a great one for me.  No confusion, my library was in great working order and with no fog, it is really a great feeling!

Look for the next number to be about the Storage part....oh oh... what do you think this may be about?  Let me know if you have any ideas about it.  Remember you are the librarian, you also have Epilepsy and do you need Storage?

Hope this was a great week for all of us Purple Power people fighting Epilepsy together.

Purple Power goes out to all
Julie

Another Week Free

I hope it is like this for everyone despite the hot weather and strange watches we have been having.  YEH I can say another week seizure free has just gone by.

Listening  to music, and playing the piano has been a good relaxing form for me this week.  When I have free time I love to crochet, do picture puzzles, and when nice out go for walks or working in my 'happy place' my garden.   It has been full of  the grand kids too which of course there are many laughs there, how can you not. 
If you get bored, find yourself a hobby or do something you enjoy as it will not only keep you stress free but make your life full of smiles.  Hope everyone else had a great week too.  Another free week coming.

Keep smiling as that is the best medicine ever
Julie

Living Well With Epilepsy

Living well with Epilepsy should be one of our goals in life.  In fact our most important goal.  Just think if we were to be able to keep the seizures under control, having the minimal amount of side effects possible and to be able to life a full life with the ability to cope with your condition the best way possible. 

This is something I am sure all wish they could have.  Do you want to know the good news?  It is possible!!

We all know about the medications and other treatments available, but we must do our part as well.  Are you whispering in my ear...how do you expect me to do that?  Here is what I have done.

1.  Know what some of your important Triggers out that will cause a seizure should it be provoked.  Everyone has different ones.  Sometimes you only need one Trigger, others it may take several. 

2.  A good way to find your Seizure Trigger is to make yourself a seizure diary by keeping track of all of them.  This includes what they look like/or are they different than before, what were you doing that day/or even the day before, even down to what you have ate that day.  Anything that is different other than what you are use to having can be a big factor should you take this list with you on your next Doctors apt.

3.  Don't let the stigma attached to you having Epilepsy get in your way of living a normal lifestyle.  There are times when people throw stones your way and can get you upset thinking it was meant for you, when in fact they were aiming at something entirely different.

4.  Driving a vehicle and having that choice taken from you can be a delicate subject for some.  There are ways of transportation available to you, and hey....just think of the money you would save.  Everything has its good side.  Why risk your life as well as that of others.

5.  Epilepsy in the Workplace may look to be a real hassle and problem.  Be honest with your employer and co-workers and you will stand a better chance of earning respect from them.

These are just a few things one can do and have to think about.  Help yourself gain deeper insight into your seizures and triggers, share that information with your doctor, improve your treatment and long-term care, empower yourself with all the information you can.  All of this should help improve your seizure control.

Have a great evening
Keep Smiling
Julie

A Trigger for Me

Over the past couple weeks we have had the strangest weather here in Sask.  The heat and the humidity alone could set off warning signs for a seizure.  Ah ha I missed it all this time, it just couldn't catch me.

I hate in some way to admit how much I love watching electrical storms.  I guess in some small way I see my daughter (who is no longer with us) in each lightning strike reaching down for me.  More than not she is telling me to get inside as she died in her sleep on hospital bed with Epilepsy also.

This past week has been full of strange full blown thunder storms with happenings that you just can't take your eyes off long enough to pick up the camera.  Threatning or warnings of tornadoes in our community. Several have already caused havic around us yet we stayed safe. 

I have always been intrigued by weather changes and what happens inbetween.  Have you taken a look at your diary and noticed that you have only had seizures of any kind during a certain season?  It does sometimes happen.  The summer is a bad one for me.  There is not only the heat and the storms.  There is also all the things floating around in the air, the pollen is flying around everywhere stuffing up those sinus areas or being allergic to some of it.  Bring down your immune system and the seizures are free to come in.

This is a big trigger for me too.  Possibly not as big as others but it is still one to watch for even though nature is there and there is not much a person can do about a thunderstorm happening with bright lights flashing, nor letting down our immune system with the smell of pollen in the air during the summer.  Some of these we just can not do much about.

Other triggers like eating properly, getting a good nights sleep, and making sure you take your medications as prescribed and on time, learning ways to keep the stress down we can control. 
STAY HAPPY is one way.  Life will go on.
Julie

What If I Am Not Be Able to Afford My Meds.

 

As searching the internet I came across something that could be of great use to many.

With the worlds economy today and a lot of us needing medications some that we can not afford, this could be one way to overcome it.  Besides this list I am sure there are other ways as well.  We can not go or miss a medication even though we wish we could some days. 

We can also do other things to help.  I recall when I was on a whole bundle of meds, some of them not even necessary as same med with different name and all doing the same chore.  This does not necessarily help but hurt the problem. 

It is now summer and another thing we can do is make sure if outside in the hot sun, to wear the proper gear.  A hat, glasses and make sure you have access to that water bottle as you could get drained very quickly.

This is a long list so will leave you hear.  Have a great Purple Power weekend, seizure free yet fun and laughter can go with you.

Julie

 

What if I cannot afford my epilepsy medication?

In these tough economic times, everyone is having to make some cut backs.  For some, that may mean skipping an evening out a restaurant, or not buying that new pair of shoes. But what if that means your epilepsy medications?  One medication alone can be quite costly, and often time people are prescribed more than one, which means the cost can really add up.  An important component of seizure management is taking your medications regularly, and exactly as prescribed by your epileptologist or neurologist, without missing doses.  But what if you simply cannot afford the costly monthly payments? Should you simply give up and not take the medication you need?  No!! There is help, if you know where to look!
One of the first options is to contact the pharmaceutical company that makes your particular medication.  Many pharmaceutical companies offer what are known as “prescription assistance” programs, which may include reduced costs, coupons, or even free supplies.  Below is a list of some of the most common brand name anti-epileptic drugs and their corresponding pharmaceutical companies.  If you are currently prescribed one of these medications, try contacting the associated program to see if you qualify for help.
Acthar Gel (ACTH)
Questcor Pharmaceuticals
http://www.questcor.com/
(888) 435-2284
Banzel
Eisai Neurology Patient Assistance Program
http://www.rxassist.org/
(866) 694-2550
Carbatrol
Shire Pharmaceuticals Carbatrol Patient Assistance Program
http://www.patientassistance.com/
(888) 227-3755
Depakene, Depakote, and Depakote ER
Abbott Patient Assistance
http://www.depakoteer.com/
(800) 222-6885
 Diastat AcuDial Rectal Gel
Valeant Pharmaceuticals Patient Assistance Program
www.rxhope.com/valeant
(800) 511-2120
Dilantin
Pfizer Helpful Answers
http://www.pfizerhelpfulanswers.com/
(800) 707-8990 or (866)706-2400
Felbatol
Meda Pharmaceuticals Patient Assistance Program
http://www.medapharma.us/ or http://www.felbatol.com/
(800) 678-4657 or (800) 526-3840
Gabitril
CephalonCares Foundation Patient Assistance Program
http://www.cephaloncares.com/
(877) 237-4881
Keppra, Keppra XR 
UCB Patient Assistance Program
http://www.patientassistance.com/
(866) 395-8366
Lamictal and Lamictal XR
GlaxoSmithKline Bridges to Access
http://www.bridgestoaccess.com/
(866) 728-4368
Lyrica
Pfizer Helpful Answers
http://www.pfizerhelpfulanswers.com/
(800) 707-8990 or (866)706-2400
Mysoline
Valeant Pharmaceuticals Patient Assistance Program
www.rxhope.com/valeant
(800) 511-2120
Neurontin 
Pfizer Helpful Answers
http://www.pfizerhelpfulanswers.com/
(800) 707-8990 or (866)706-2400
Sabril
Lundbeck’s SHARE Call Center
http://www.lundbeckshare.com/
(888) 457- 4273
Tegretol, Tegretol XR 
Novartis Patient Assistance Foundation Program
http://www.patientassistance.com/
(800) 277-2254
Topamax
Johnson & Johnson Patient Assistance Foundation
http://www.jjpaf.org/ or http://www.access2wellness.com/
(800) 652-6227 or (800) 523-5870
 Trileptal
Novartis Patient Assistance Foundation Program
http://www.patientassistance.com/
(800) 277-2254
Vimpat
UCB Patient Assistance Program
http://www.patientassistance.com/
(866) 395-8366
VNS Therapy Access Program
http://www.cyberonics.com/
(877) 610-1180
The B.J. Wilder VNS Therapy Access Program (VTAP)
1-877-610-1180
Zarontin
Pfizer Helpful Answers
http://www.pfizerhelpfulanswers.com/
(800) 707-8990 or (866)706-2400
Zonegran
Eisai Neurology Patient Assistance Program
http://www.rxassist.org/
(866) 694-2550

If your prescription is for a generic medication, such as the ones listed below, contact:

Carbamazepine, Clonazepam, Clorazepate, Diazepam, Divalproex, Gabapentin, Lamotrigine, Lorazepam, Levetiracetam, Phenytoin, Phenobarbital, Topiramate, or Zonisamide

 Express Scripts Specialty Distribution Services
Rx Outreach Medications
(800) 769-3880
Or
Xubex Pharmaceuticals Patient Assistance Program
http://www.xubex.com/
(866) 699-8239

If your medication is not listed here, or you contacted the pharmaceutical company and where not able to obtain assistance, do not give up hope. Here are a few other options you should try:

Information on available patient assistance programs: 
http://www.together-rx.com/
 Information on patient assistance programs for each medication: 
http://www.pparx.org/ or https://www.rxhope.com/
For those who cannot afford their prescription medications:
http://www.needymeds.org/
http://www.patientassistance.com/
Email:mailto:info@rxassist.org
 Partnership for Prescription Assistance 
http://www.helpingpatients.org/

Although this list is not exhaustive, it goes to show that there are a large number of possible options out there.  So, if you do not have luck with the first program you call, do not get discouraged!  Look around, call all of the general program above, contact your local government, even your church.  There are many people and programs out there who want and can help, but first, you have to ask! Good luck!!

How a Beautiful Holiday can Be Really Refreshing

Just back from a one week holiday with our granddaughter and family.  Lots of kids, lots of grand kids, lots of great grand kids. Georgous setting out in the country on a huge farm, so super relaxing yet lots to do and see.  Out every a.m. and p.m. to feed the chickens, fishing, going for quayd rides, you name it we did it.

Thought of the day, I went to get my 1st night meds out, oh oh no matter how hard I looked, I could not find my generic Tegretol. Was sure the bottle was left behind at home.  I could not get it now as we were a good 8hr from home. Only thing left to do and I must tell you that brain of mine is smart at times, I went to sleep totally relaxed and just told it that everything was going to be just fine.  How could it not.

Woke up the next a.m., no seizure, feeling great and ready for the day ahead. I did find my med that day by accident.  It just showed me how total relaxation made my holiday the best week I could ever have. 

Even though a lot of work to do out in the country and away from the excitement, hussle and bussle of the rest of the world, it was at the same time that relaxation and serenity I needed to make me want to retire on a place like that.

Med or no Med I am just fine or in fact couldn't be better.

My daughter a photographer,

played with the original farm we were at.  In the second floor the what looks like a person in the window, is really a shadow.  Looks like a ghost.  :)

Happy and Healthy Purple Day

A Day in A Life of Epilepsy

Epilepsy affects men, women, children, and often whole families.  After over 40+ years of epilepsy I am now very thankfully under control. 

Even though the majority of my seizures were during the night, that did not keep me from having them at any time of day.  Most of them too were the Tonic Clonic, and being out for the few minutes I was having them, oh boy was it the after effects I felt. I would not know who I was, where I was nor on what planet as I referred to it as.  This would go on for many days and with no memory and very unstable the world around me didn't much exist.

At one point my short memory span was so short that even at supper time my husband would tell me to 'eat Julie' and all he would get was a blank stare.  I had forgot what he said after he finished talking.  He would then take my fork to fill with food and gradually nudge it to my mouth.  Of course when I smelt the food I would then eat it.

This is where food is so important, yet as you can see there are some of us that just don't get it when necessary.  Our Brain, being the most important organ in our body needs food to survive each day.  This could then possibly be an answer why I was after some of my seizures.

We had 5 children (1 with epilepsy passed on 3yrs) and when a person has to rely on others for any details of the past.

-I have learned to read all I can and do research on everything new that comes out.

There is something new to learn every day as our brain is complicated to the human mind.

-I have also learned of the many side effects of the Anti Epilepsy medication and there are lots.

-Keeping a daily diary and trying to figure our Triggers that could cause a seizure is a main book on my desk.

-As you can see Nutrition is so important to me now and to all parts of our health.

-Living a healthier lifestyle - get out of your box and do something to possibly to reach a goal you have

-Last but least - Keeping a positive attitude is the best thing we can do.

This is my to do list for every day of my life.  Do I have seizures still - yes.  The odd breakthrough will come but it won't stay long.  Do I take the medications still - yes.  Not nearly as many as was at one point.  Being able to say I am under control for now is a huge bundle lifted from my shoulders.  I use to be looking over those shoulders every few seconds trying to figure if a seizure were about to strike.  This only makes matters worse.  Once I can break through and be able to say "Yes I have Epilepsy, BUT it doesn't have me!" you can smile and let go.

I do hope you will join me and feel free to tell your story.