Shadow was trained for his trainer+she found she preferred to get another standard poodle, so he is so extremely well trained I hope to be clear + focused here. Shadow is taught to alert me by sitting or putting his paw on my knee to warn me of an oncoming seizure. He found the 1st day here I became very unaware in the pre-seizure state, so he disappeared~
I found him under the desk next to my bed--which I had to sit down on to pet him--just in time for me to feel the onset + lay down safely. At the stores, he learned to herd me by walking back+forth in front of me--refusing 2 heal--which he never did--2 stop me and make me ask"what's up shadow?" by then I'd begin to feel it + sit down. Trainer explained that Shadow had alreadybtried tobalert me+since it didn't work he fdound what did. During training class I had Shadow sit/stay~walked 20 feet away~turned toward him + said come. He came quickly toward me~jumped up+hit my shoulders with both paws+sat directly in front of me correctly as if nothing abnormal happened. Trainer instantly commanded "Jen sit down!~JEN -SHADOW JUST PUSHED YOU UPRIGHT FROM 45 DEGREES--SIT FAST!" Shadow began xrying when I started to back out the car months later. He did a doggy scream/cry..
Jen&Shadow send "Shadow Smiles" from our Verizon Wireless Device
------Original Message-----
From: <epilepsy@yahoogroup
To: <epilepsy@yahoogroup
Date: Sat, Jul 4, 9:46 AM +0000
Subject: [epilepsy] Digest Number 4805
There are 13 messages in this issue.
Topics in this digest:
1a. (epilepsy) #th of July
From: Julie Hope
1b. Re: (epilepsy) #th of July
From: Jewl Wall
1c. Re: (epilepsy) #th of July
From: uniquepnk tds.net
2a. Re: How long did it take for your Drs to figure out what kind of sei
From: trish schobert
2b. Re: How long did it take for your Drs to figure out what kind of sei
From: tim holt
3a. Re: Dogs and seizures
From: Jewl Wall
4a. To people who have a seizure response dog
From: no_seizures_
4b. Re: To people who have a seizure response dog
From: Jewl Wall
4c. Re: To people who have a seizure response dog
From: potter darnell
5a. misdiagnosed
From: TIMOTHY BALDWIN
5b. Re: misdiagnosed
From: Julie Hope
6a. Re: Breakthrough Seizures
From: Kelly Porter
7. Final outcome
From: Kelly Porter
Messages
____________
1a. (epilepsy) #th of July
Posted by: "Julie Hope" epilepsyhealth@
Date: Fri Jul 3, 2009 10:46 am ((PDT))
Everyone have a great 4th of July weekend and one to remember.
Stay safe and keep smiling
Julie
Julie Hope
epilepsyhealth@
http://www.2betrhea
Messages in this topic (3)
____________
1b. Re: (epilepsy) #th of July
Posted by: "Jewl Wall" wallja99@fightfor.
Date: Fri Jul 3, 2009 2:58 pm ((PDT))
Everyone,
Have a safe and happy 4th of July
Jewl, TX
Information on Seizure Response/Alert Dogs
http://www.homestea <blocked::http://www.homestea
d.com/Tagert/
[Non-text portions of this message have been removed]
Messages in this topic (3)
____________
1c. Re: (epilepsy) #th of July
Posted by: "uniquepnk tds.net" Uniquepnk@tds.
Date: Fri Jul 3, 2009 6:10 pm ((PDT))
Happy 4th of July to everyone and take care.
Tammy
On Fri, Jul 3, 2009 at 1:45 PM, Julie Hope <epilepsyhealth@
>
>
> Everyone have a great 4th of July weekend and one to remember.
> Stay safe and keep smiling
> Julie
> Julie Hope
> epilepsyhealth@
> http://www.2betrhea
>
>
>
[Non-text portions of this message have been removed]
Messages in this topic (3)
____________
____________
2a. Re: How long did it take for your Drs to figure out what kind of sei
Posted by: "trish schobert" jiminycricketblue@
Date: Fri Jul 3, 2009 1:45 pm ((PDT))
It too 18 yrs for mine I was 2 1/2 when they first noticed them now I am 50 Now I don't have epileptic siezures(meds controlling them) since Feb of this yr. I still have phuedo siezures yet but I am working on those to stop them also
Trish (jiminycricketblue)
--- On Thu, 7/2/09, Kevin <kevluvskats@
From: Kevin <kevluvskats@
Subject: [epilepsy] How long did it take for your Drs to figure out what kind of seizures you have?
To: epilepsy@yahoogroup
Date: Thursday, July 2, 2009, 6:05 PM
What kind and how long to figure out exactly what medicines are the right ones for you? It took about 40 years for them to figure mine out. They were back and forth on the issue of whether mine were epileptic or psychological The NYC Hospitals 17 of them total were of no help. Things started getting better in 1996 when Emory University Hospital in Atlanta GA reasoned that if my seizures are always at night, then they can't find out anything in the day. So they pushed aside all the previous medical records and had me stay overnight and realized what was going on. Right Temporal lobe as they said, then they gave me Keppra and Tegretol and improvement came. Then in University of Nebraska Med Ctr, with EEG video monitor, EKG, MRI and Cat Scan, they figured it started in the right temporal lobe but spread only as far as the frontal lobe. So they changed from Tegretol to Trileptal. So Keppra and Trileptal have been much better at controlling them, so now its
only about once every 2 months if I'm careful about the way I eat. Constipation always prompts one so I'm very nervous and careful about what I eat. Some Drs also claim Psychological fears also have triggered them but mostly they are epileptic and only partially psychological. Now things are okay. I don't like that it took soooooo long to get an answer but at least they know and have given me the right meds now.
Housekat / Kevin Knight
[Non-text portions of this message have been removed]
Messages in this topic (9)
____________
2b. Re: How long did it take for your Drs to figure out what kind of sei
Posted by: "tim holt" tim_stacie77316@
Date: Fri Jul 3, 2009 10:03 pm ((PDT))
I cannot image ho that is for you. I fought for almost 7 years for my daughter. Several nights I stood and watched her have partial tonic clonic seizures. I would tell the doctors and they said it was new mommy syndrome. But I can tell you I was not the crazy one it was them. My 8 year old daughter has been on Keppra for about 2 years and we only have petia mal seizures and I do not even see most of them. She is able to let me know about them after the fact. But hers come from the back lobe in her brain. But we do not only deal with this but she has a blood vessel that is extra also. They call it an anomaly. Every day she gets up and acts almost 8 but mainly 5 or so then that is good day for all of us involved.
Have a happy 4th to all
Stacie H
--- On Fri, 7/3/09, trish schobert <jiminycricketblue@
From: trish schobert <jiminycricketblue@
Subject: Re: [epilepsy] How long did it take for your Drs to figure out what kind of seizures you have?
To: epilepsy@yahoogroup
Date: Friday, July 3, 2009, 3:45 PM
It too 18 yrs for mine I was 2 1/2 when they first noticed them now I am 50. Now I don't have epileptic siezures(meds controlling them) since Feb of this yr. I still have phuedo siezures yet but I am working on those to stop them also
Trish (jiminycricketblue)
--- On Thu, 7/2/09, Kevin <kevluvskats@ yahoo.com> wrote:
From: Kevin <kevluvskats@ yahoo.com>
Subject: [epilepsy] How long did it take for your Drs to figure out what kind of seizures you have?
To: epilepsy@yahoogroup s.com
Date: Thursday, July 2, 2009, 6:05 PM
What kind and how long to figure out exactly what medicines are the right ones for you? It took about 40 years for them to figure mine out. They were back and forth on the issue of whether mine were epileptic or psychological The NYC Hospitals 17 of them total were of no help. Things started getting better in 1996 when Emory University Hospital in Atlanta GA reasoned that if my seizures are always at night, then they can't find out anything in the day. So they pushed aside all the previous medical records and had me stay overnight and realized what was going on. Right Temporal lobe as they said, then they gave me Keppra and Tegretol and improvement came. Then in University of Nebraska Med Ctr, with EEG video monitor, EKG, MRI and Cat Scan, they figured it started in the right temporal lobe but spread only as far as the frontal lobe. So they changed from Tegretol to Trileptal. So Keppra and Trileptal have been much better at controlling them, so now its
only about once every 2 months if I'm careful about the way I eat. Constipation always prompts one so I'm very nervous and careful about what I eat. Some Drs also claim Psychological fears also have triggered them but mostly they are epileptic and only partially psychological. Now things are okay. I don't like that it took soooooo long to get an answer but at least they know and have given me the right meds now.
Housekat / Kevin Knight
[Non-text portions of this message have been removed]
[Non-text portions of this message have been removed]
Messages in this topic (9)
____________
____________
3a. Re: Dogs and seizures
Posted by: "Jewl Wall" wallja99@fightfor.
Date: Fri Jul 3, 2009 2:54 pm ((PDT))
Julie,
Here in the states yes, the ADA lets you take service dogs in and they do
not have to be certified. There is no one test to be certified although
there are organizations that will do this for you for a fee.
You can get tags, scarves, backpacks and such off the net. I have a few
places that sell them.
Jewl, TX
Information on Seizure Response/Alert Dogs
http://www.homestea <blocked::http://www.homestea
d.com/Tagert/
[Non-text portions of this message have been removed]
Messages in this topic (9)
____________
____________
4a. To people who have a seizure response dog
Posted by: "no_seizures_
Date: Fri Jul 3, 2009 3:40 pm ((PDT))
Every time I see a person with a service dog, I always want to ask a person in a friendly way as what they use the dog for (I don't do that). I wish there was a simple friendly way to ask people that, but know its not polite.
I always wish a person would simply respond by saying, "I have epilepsy, they can detect a seizure coming and give me time to be ready for it". My response would be I've had epilepsy all my life and have friends in epilepsy support groups on the internet who have seizure response dogs. To begin a friendly conversation. I know people have service dogs for so many different health reasons.
My question is to people who have a seizure response dog. Is there a way to word a question to you by a person you don't even know that would sound friendly in a way its not rude, but maybe caring or sounding very friendly ect...interested in both you and your dog? I'm sure you know what I mean, simply talking to a person and not sounding rude? A person out in a store, a mall, shopping center, park ect...
Or, is it simply rude to say anything to anybody using service dog because they want you to maybe pretend the dog isn't there and treat them NORMAL (I hate that word)! You know what I mean. Take care, keep a smile on your face!
Steve
Messages in this topic (3)
____________
4b. Re: To people who have a seizure response dog
Posted by: "Jewl Wall" wallja99@fightfor.
Date: Fri Jul 3, 2009 5:38 pm ((PDT))
Steve,
I when I did not have a service dog, I would say excuse me Sir/Madam I am
interested in Service dogs and yours is pretty. May I ask how the dog helps
you.
I feel by starting with the respectable Sir or madam you get a better
response and naming you are interested again sounds like respect not being
nosey.
I am on my second seizure alert dog and always appreciate a compliment on
how pretty or handsome the dog is first.
Jewl, TX
Information on Seizure Response/Alert Dogs
http://www.homestea <blocked::http://www.homestea
d.com/Tagert/
[Non-text portions of this message have been removed]
Messages in this topic (3)
____________
4c. Re: To people who have a seizure response dog
Posted by: "potter darnell" cigars1small@
Date: Fri Jul 3, 2009 8:19 pm ((PDT))
Happy 4th to all
darnell
--- On Fri, 7/3/09, no_seizures_
From: no_seizures_
Subject: [epilepsy] To people who have a seizure response dog
To: epilepsy@yahoogroup
Date: Friday, July 3, 2009, 5:39 PM
Every time I see a person with a service dog, I always want to ask a person in a friendly way as what they use the dog for (I don't do that). I wish there was a simple friendly way to ask people that, but know its not polite.
I always wish a person would simply respond by saying, "I have epilepsy, they can detect a seizure coming and give me time to be ready for it". My response would be I've had epilepsy all my life and have friends in epilepsy support groups on the internet who have seizure response dogs. To begin a friendly conversation. I know people have service dogs for so many different health reasons.
My question is to people who have a seizure response dog. Is there a way to word a question to you by a person you don't even know that would sound friendly in a way its not rude, but maybe caring or sounding very friendly ect...interested in both you and your dog? I'm sure you know what I mean, simply talking to a person and not sounding rude? A person out in a store, a mall, shopping center, park ect...
Or, is it simply rude to say anything to anybody using service dog because they want you to maybe pretend the dog isn't there and treat them NORMAL (I hate that word)! You know what I mean. Take care, keep a smile on your face!
Steve
[Non-text portions of this message have been removed]
Messages in this topic (3)
____________
____________
5a. misdiagnosed
Posted by: "TIMOTHY BALDWIN" tbb1@prodigy.
Date: Fri Jul 3, 2009 8:56 pm ((PDT))
I've been wondering about
Tim B. < tbb1@prodigy.
Messages in this topic (2)
____________
5b. Re: misdiagnosed
Posted by: "Julie Hope" epilepsyhealth@
Date: Fri Jul 3, 2009 10:13 pm ((PDT))
Tim have you tried other neurologists? I am hoping you have. I had one for years and found he had given me
the strangest mix of AEDs you could imagine and no wonder I went all those years on another planet. Changed
neurologists and he pointed out the difference immediately and within a few weeks it was like a cloud
disappeared and I could see again. He explained how I had been taking AEDs that were working against each
other and went from multi ones many times per day gradually down to the two that am taking now. For me it was
all a different opinion and look at the situation that made all the difference in the world.
Julie
Julie Hope
epilepsyhealth@
http://www.2betrhea
----- Original Message -----
From: "TIMOTHY BALDWIN" <tbb1@prodigy.
To: <epilepsy@yahoogroup
Sent: Friday, July 03, 2009 9:56 PM
Subject: [epilepsy] misdiagnosed
I've been wondering about the cause of my uncontrollable seizures and the reason that they've never responded
to the medicines which I've been prescribed over and over again. Maybe, all those meds. weren't developed for
the type of seizure that I have. Has anyone wondered if they could have been misdiagnosed, and suffered from
it the whole time?
Tim B. < tbb1@prodigy.
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Messages in this topic (2)
____________
____________
6a. Re: Breakthrough Seizures
Posted by: "Kelly Porter" kellyporter@
Date: Fri Jul 3, 2009 9:40 pm ((PDT))
A breakthrough seizure is a seizure which occurs in a person who has a
reasonable level of control, and for one of several reasons, suddenly
has an unexpected seizure. So if a person is still having regular
seizures (even if less in frequency and intensity then before on meds)
then they are not breakthroughs. In this case this person has simply
not reached a complete level of control, but rather has achieved a
better then pre-med level of seizure activity.
Using myself as an example. Prior to being on any meds I was having
10-12 complex partials daily. When on meds this was reduced to 3-6 per
day-these would not be breakthroughs since I had never gained any level
of control at this point. Now, once I had my Right Temporal Lobectomy
in March 2008, I finally reached a level of control where I went as many
as 7 1/2 months seizure free. Now the seizures I had in May 2009 I
would call breakthrough seizures-since prior to that I had gained a
significant level of control. I would call any seizures I would have
from this point on breakthroughs.
Though I hope to remain seizure free for a lifetime--I do not expect
that to be so since I have had 7 since my surgery. I do however
consider myself a success story!!
Hope that helps.
Kelly P
CBI wrote:
> I'm confused. I thought a breakthrough seizure was when someone is on medication and they have a seizure but because of the medication it prevents a full seizure from occurring and instead only a smaller seizure occurs. Its an indication the medication being take is working by preventing a full seizure. In my case, they last a few seconds and I stay conscious. I have one about once a month and they may come in clusters. How are others defining breakthrough seizures? What's the difference between a breakthrough seizure and other regular seizure? I realize it may not be a black and white difference but what have others learned from their respective doctors may help explain this. Thanks Take care.
>
>
>
Messages in this topic (16)
____________
____________
7. Final outcome
Posted by: "Kelly Porter" kellyporter@
Date: Fri Jul 3, 2009 11:57 pm ((PDT))
I know I have not posted often lately-but wanted to be sure to let those
of you who know me in on this information.
After a 3 1/2 year medical battle that includes 2 neurological
conditions (EP and Chiari), too many meds to count now, 3 brain
surgeries, (and 1 hardware removal!), and still yet undiagnosed problems
unrelated to either of those conditions, my social security battle is
now over.
On June 16th, nearly 3 years after applying, I had my hearing. My
lawyer told me to expect to wait at least 90 days to receive my
judgement in the mail-as the was the national average for hearing decisions.
At the hearing the Judge spent approx 20 minutes questioning me. He
also asked my lawyer some questions about the medical file. In the end
he said "I do not know why this was not awarded sooner, I am giving you
a bench decision and awarding your benefits today." I actually had to
say out loud "can you repeat that?" My lawyer had to look at me and say
"it's OK you won".
After the end of the hearing my lawyer said we will still have to wait
for all the official paperwork to come in the mail before anything
happens-but that getting a bench decision means the process will be faster.
This means that though my life is so drastically different then it was
almost 4 years ago---the summer I started having those weird dizzy
spells, ringing in my ears, strange pain-all sorts of stuff---my fight
is over and I can go on from here and continue learning how to manage my
life and live it without justifying my story to anyone.
Kelly P
Messages in this topic (1)
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