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Old 01-04-2010, 10:34 PM   #1
barbarasc
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Siezures Siezures go away!

I am new to this board but wanted to stop by and say hello! My name is Barbara and I have a 21 year old daughter Jenny. Jenny was born with a rare disorder called Tuberous Sclerosis. This disorder impacted Jen's life when she was 6 weeks old and has never let up. Jenny deals with siezures almost daily and the daily struggle of watching her knowing there is nothing I can do sometimes is more than we can bare. Jenny mental age is about 3 the good news about that......she will always be my little girl

Now for the good news, yes there is good news!! Jenny has taught me how to really live life, how to love with out question, to laugh whenever we can, to share every moment with a joyful glow. My favoriate saying is "live life like your hair is on fire". Live, breath it, share, be it. Most of all just BE!

Jenny loves to cruise on Disney Cruise Line....we leave on the Magic Feb 13. She enjoys the shows, the pizza, Goffey and the princess always give her a little "extra" attention. The cast on the ships have always gone the extra mile to make Jen smile! I still remember walking the deck and seeing Mikey on his way "home" but he stopped when he saw Jen and he got down next to Jen's chair (she is in a wheel chair) held her hand until she cracked a smile....the moment was priceless!

The reason for this post is to tell everyone....LIVE LIFE LIKE YOUR HAIR IS ON FIRE! Live every second and don't worry about the small stuff and let's face it most of life is made up of small stuff.

Hugs
Barb
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Old 01-05-2010, 06:18 AM   #2
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My DGD (6) has epilepsy but hers' is controlled with medication. A little boy we know has down's and he suffers from severe seizures so I know what you are going through. He is on all kinds of meds and recently started the keto diet. It has helped him a little but he is not seizure free.

I hope you have a wonderful cruise. We just reurned from spending Christmas at the World. One day I'd like to take a cruise. My DGD(16) asked if we could take one for her graduation. That would be nice. We need to convince my DH into it though.
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Old 01-05-2010, 01:15 PM   #3
Kathy C
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Thank you for your post! You are so right. We take so much for granted. Until our granddaughter was born two years ago (next week), I didn't worry so much about "things." Now I pray every day and night that God keeps her healthy and safe. Don't care if I have to work the rest of my life as long as she and my family have their health and are safe.

None of us knows what tomorrow brings so live today like it's your last!!

Enjoy your cruise with your beautiful daughter!
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Old 01-08-2010, 07:35 AM   #4
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My wife (age 35) recently passed away due to a brain-tumor and we faced the struggles of cancer for the past 3 years... I can speak for my wife and say that I know she feared her occasional and fairly-well-controled seizures more than dying. It isn't that seizures were that painful or scary or necessarily life-threatening but it was the unknown and sudden onset of tonic-clonic (grand-mal) and partial-complex seizures and auras and other things that bothered her, the loss of control and not knowing where or when it would happen...

I found it so strange to be able to do certain things in the past couple of weeks like turning the flash on my camera back on and using compact-flourescent light bulbs again which I hadn't been able to do for years as those were some of her triggers.

One positive note is that I was a total hero at work a few months back when a lady had a grand-mal seizure right at the entrance to the building and I was the one who walked out and saw 30 or more adults with their jaws on the floor standing around like total idiots (since average-Joe has no concept of what to expect) and of course I calmly walked over and held the ladys head and turned her over on her side, asked someone to time how long it lasted and I waited there until the paramedics arrived and carted her off... People asked "how did you know what to do" and "how could you be so brave". I just found the situation no big deal and everyones responses a little funny.

So I don't envy any of you who have to deal with seizures on a daily basis but keep your chin up and have faith in your neurologist, I know we had a great one who was very helpful yet open and honest about what to expect. She would always say "dont go climbing ladders please" lol
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Old 01-09-2010, 10:13 AM   #5
barbarasc
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Quote:
Originally Posted by FellowTraveller View Post
My wife (age 35) recently passed away due to a brain-tumor and we faced the struggles of cancer for the past 3 years... I can speak for my wife and say that I know she feared her occasional and fairly-well-controled seizures more than dying. It isn't that seizures were that painful or scary or necessarily life-threatening but it was the unknown and sudden onset of tonic-clonic (grand-mal) and partial-complex seizures and auras and other things that bothered her, the loss of control and not knowing where or when it would happen...

I found it so strange to be able to do certain things in the past couple of weeks like turning the flash on my camera back on and using compact-flourescent light bulbs again which I hadn't been able to do for years as those were some of her triggers.

One positive note is that I was a total hero at work a few months back when a lady had a grand-mal seizure right at the entrance to the building and I was the one who walked out and saw 30 or more adults with their jaws on the floor standing around like total idiots (since average-Joe has no concept of what to expect) and of course I calmly walked over and held the ladys head and turned her over on her side, asked someone to time how long it lasted and I waited there until the paramedics arrived and carted her off... People asked "how did you know what to do" and "how could you be so brave". I just found the situation no big deal and everyones responses a little funny.

So I don't envy any of you who have to deal with seizures on a daily basis but keep your chin up and have faith in your neurologist, I know we had a great one who was very helpful yet open and honest about what to expect. She would always say "dont go climbing ladders please" lol
I am so sorry to hear about your wife, that loss is something that I can't even imagine.

Seizures......another word for scary medical condition. Jen has suffered with uncontroled seizues since she was 6 weeks old, she's 21 now. Everyday is a new day and every day that she goes with out a siezure is a blessed one. When we are out in public shopping, on vacation we always worry. Jen has Tonic/Clonic and generalized seizures along with a lot of other medical concerns. The seizures come on with little or no warning and we never know how bad the seizure will be or how long it will last. We also worry....I know we shouldn't but seizures tend to freak people out and when seizures happen while we are out we never know how people are going to react. Sometimes when Jen has a bad onset she loses control of body functions...my fear is that this happens and we are not in a place that I can get her safe,comfortable and cleaned up.

Good news.....Jen is a happy girl and we try NOT to allow her medication condition to rule her life or who she is. This cruise in Feburary will be Jen's
20th cruise and she loves being on the high seas! We will cross our fingers in hopes all goes off with out a hitch.

Your comment about knowing what to do and your ability to help someone having a seizure. That same thing happened to me several years ago, I was amazed how people reacted.....OR so I say didn't react! I did what you did, when EMS showed up I gave the the run down on what happened and they asked me if I was a nurse.....I said NO just a Mom
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