Causing my own seizures, banging my head against the wall.

   I do have Epilepsy, but sometimes I am so frustated with my life that I will go into a state of depression and hit myself in the head causing even more Seizures. I want to share this because there are so many people out there who deal with Epilepsy with Depression togrether. Even though I have a great support system, I still have times I have a sence of worthlessness. I think one of the things that make me feel this way is because even though I have different treament options such as VNS and medication, I feal slowed down and not being able to keep up with the world around me.

 This is the first time I have talked about this in my blog, simply because of what people might think or say. The only reason I am sharing this now is because I know that know that there are others out there who may have the same problem.

   Other ways that I have cause my own seisures include, dinking with medication, staring at the wall, and watching strobe videos on YouTube. 

  Well I hope my honesty has helped those reading. If you struggle with the same thing please comment and share bellow.

Why Some Epileptics (ABDL) Age Play

   Some people don't why some of us like to age play. For a lot of people it's never for the same reason. Some ABDL's do it for stress relief, or some just miss that sense of reliving there childhood.
   

There is another group of people I want to talk about to today, something I don't think people know exists. People like myself, a person with epilepsy. Someone reading this may say this is ridiculous, but it's not a crazy as you may think.
I have many reasons that I age play, one of these reasons is my struggles with urinary incontinence.
Because of this I have to wear adult diapers, but this is not something to easily accept. To help myself accept this I have started to age play with baby toys, adult baby clothing, and ABDL clothing. With this new change in my life I have been a calmer person, have had less seizures, and I have felt more confident in my need for adult diapers.
    There are sopme people who may be angry or upset with this article. Some who my say, I have epilepsy and I don't wear diapers and act like a baby. To those people I would like to say, all of us who deal with this are different. Also we all have different things going on with our health and how we choose to deal with our problems is different as well.

Epilepsy & Wearing Diapers

One question that a lot of people ask. Is it normal for adults with epilepsy to wear diapers. The answer is that it is a matter of preference if the person with epileptic incontinance feels it is necessary for them to wear an adult diaper. Some people are OK with wearing them, while others are turned off by the idea.
     When I started having problems with incontinence it was a very hard transition because in my mind I thaught only babies and old people wear them. One day I had an acident after having a seizure in public, I wet myself and it was an embaressing moment in my life. All I knew is that I never wanted that to ever happen again. In my opinion, it is better to wear an adult diaper then it is to have an embaressing acident in public.

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My Bucket List

One thing that I have been thinking about as my life goes on is things I want to do bwfore I get to old, or before my condition gets to bad. I have been making a list of things goals in lfe that I want to accomplish in my life as well as places that I would like to go. Life is to short and we should do everythingf we can to live our dreams no matter how old or how old we are, and no matter what obstacles are put in our way. 

I have my own list that I want to share, I will be working as hard as I can to check some of these of soon.

• 1 Go to Wrestlemania
• 2 Visit another country
• 3 Make a film about Epilepsy
• 4 Earn a YouTube Silver and Gold Play Button
• 5 Take my family on cool vacations
• 6 Help young people, who strugle with depression, and substance abuse.
• 7 Go to VidCon
• 8 Have a meet up to meet some of my subscribers.
• 9 Visit NYC and see the 9/11 memorial

   There are probably a bunch of other things I can add to my list that I haven't thaught of yet. My piont is this, do as munch as you can while your here, because if you sit around, life might just pass you bye.

Adult Diapering (Comfort vs Value)

My monthly diaper stash

When it comes to adult diapers everyone is looking for something different. For some people it's comfort that is the most important and for others it's price and value, it's almost impossible to get both.
No matter what your looking for adult diapers are expensive even if you save a buck or two. There are other factors to concider, how many diapers do you use per day. For me I go thru about 6-8 diapers a day. At first comfort used to be imortant to me but now that I've been in diapers for some time now value and price have been more important. I get my diapers from multipal sources solme from Ebay, Some from discount diaper sites, but the best deals I've found is from Goodwill Stores on 50% off days. Now when I go to Goodwill a pack of diapers is $6.00 but on 50% off  day you get them for $3.00 a pack. Each pack has 18 diapers  that means if you buy 4 packs you just baught a case of 72 diapers for $12.00 and normaly a case of 72 costs about $56.95 online. Now I will confess that if I have extra money I will pay for comfort, my diaper of choice for comfort is Tena Ultra I pay $68.00 for a case of 80 diapers and I buy two cases normaly. So now you can see there is a big differance between confort and value but whatever way you want it it's still expensive.

(Electric Magnetic Feilds) EMF Sensitivity on the Brain

(Eletctric Magnetic Feilds) EMF is everywhere from cell towers to cell phones, even your computer and wireless routers, basically anything powered by a large amount of electricity. High EMF can have a huge and dangerous impact on the brain especially someone like myself, simply because I have epilepsy. I have really noticed EMF sensitivity at my workplace because there is a lot of computer monitors and electrical equipment for preparing the food.

This is especially bothersome with my VNS (vangus nerve stimulator) when I go to work it feels like I'm constantly using the VNS magnet over and over again. I will say that high EMF sensitivity has never been a factor or problem for me until I had the VNS implant. Even for people without epilepsy  EMF sensitivity can cause a variety of other problems, Headaches, Migraines, Irritability, behavior disorders, Insomnia, ADHD, Alzheimers Parkinson's Stroke, Seizures, Nerve and/or muscle pain Fibromyalgia, Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME),  Multiple Sclerosis, Tumors, cancer, Heart attacks, and cardiac arrhythmias.

Product Review: Plastic Pants for Incontinence Brief

The product I am reviewing is in the subjuct of incontinence. If you ever had to wear adult diapers you would know that after a while they tend to slide down or slide off. Well I have recently found that wearing a plastic cover up will help you from this problem. They are somewhat expensive if you don't know where to look online. My first couple of pairs I got on ebay for about $7.50 for 2 pairs.
On other sites they cost anywhere from $20.00 to $45.00 depending on your size, so you best bet is to go to Ebay or other auction sites.

All in all I find that using the plastic pants cover ups helps keep the diapers from sliding down and also protects against leaks at night. There is no set brand that I have chosen for this product just whatever  fits and is on sale. But overall I would have to say that plastic pant cover ups work great, and would highly recomend to anyone who has incontinence problems.

   

Progression of My Leukodystrophy

Since the day of my surgery I have seen things get better for a while, then get worse. A kind of back and forth kind of progression. I have Leukodystrophy, and it's kind of a progessive disease that gets worse with age. Leukodystrophy is a diterieration of the Myelin Sheath or (white matter) in the brain. Myelin is the protective coat over the nerves in the brain, kind of like the plastic protection on an electrical cord. 

People with this disorder experience

• Balance / equilibriun problems
• Shaking (ataxia)
• Seizures
• Problems with motor abilities (walking running)
• Probems with itellectual abilities (comprehension, memory, behavior)
• Sensory problems (seeing hearing etc.)

With my VNS (Vagus Nerve Stimulator) I don't believe that this is a cure for my Leukodystrophy.

I have read from other people that they have had there loved ones have VNS to help control the seizures.

This does not stop the fact that the Myelin Sheath (white matter) in the brain is still in deterieration. So it is not my opinion that VNS will stop or control any of the other simptoms listed above. The reason for this is because I have begone to experience some of the other simptoms of this disease and it will only get worse as I get older.

    

Things to Concider Before Getting VNS

Today I want to share some thing you should concider before you decide to ge a VNS implant. The reason for this post is because when I heard about this amazing technology I want to get this procedure done right away. I did not way the pros and cons of the recovery process. Now you might be asking, John do you have any regrets? I would have to say no, I have a lot less seizures than I did before. I used to have about 25 -50 seizures a week now I only have about 5-10 a month wich is great.

There has been things I have to endure on my way to this piont.

So here is a list of things to cocider before making that choice to get VNS.

1. Pain for about two weeks at the incision pionts

2. Stinging sensation wnen divice is first turned on.

3. Horseness of vioce and shortness of breath depending on divice settings

4. High amounts of electric stimulation everytime the impulse generator is turned up by your doctor.

(this may be painful depending on the settings)

5. Your doctor may have to up the dose of stimulation according to the amount of seizure activity. The more seizures you are having the higher the amount of electric stimulation.

There are others factors besides these ask your doctor for free DVD and Guide about VNS.

Epilepsy and Every Day Struggles

With epilepsy I struggle every day, even after my VNS surgery. I still have seizures almost every three to five days. Now that I have the VNS the electric shock is juiced up very high leaving me burned out and tired. I am still having problems with incontinence, I go through about 4-5 adult diapers a day. Plus when I go to sleep at night I wake up wet in the morning. I because of this I have had to ask for help for my icontinence products from medicare and medicade. This has been very helpful. Even though I have the VNS I am still on a lot of medication, this may be a contributing factor to my sleepyness and my depression. Another thing I hate is being home alone while my wife is at work and my so is at work. This doe not make me feel very safe, and at times I feel very lonely. In the last five weeks I have had 16 seizures. Right now my neurologist has my VNS implant adjusted to 1.2 volts wich is low dose of stimulation, but for me it is very painful. The highest dose is 5.1 volts  wich I hope I don't have to go that high because this is already to painful for me. I know I will have to endour some things to get this adjusted right, it's just a long road to recovery for me.

Seizures In The Parietal Lobe

I just recieved my results from the MRI I had done before my surgery. The resultls said that I have mass loss in the Parietal Lobe as well as the Frontal Lobe of my brain. Now the research I was really Interested in doing was on seizures coming from the Parietal Lobe of the brain because this is wear most of my seizures are coming from according to the report from the MRI.

Here is some information I found from a site when researching.


What is Parietal Lobe Epilepsy? Parietal lobe epilepsy is a relatively rare form of epilepsy, comprising about 5% of all epilepsy, in which seizures arise from the parietal lobe of the brain. Parietal lobe epilepsy can start at any age and occurs in both males and females equally. It may be a result of head trauma, birth difficulties, stroke, or tumor, though the cause is unknown in 20% of patients. 
 Where is the Parietal Lobe Located in the Brain? The parietal lobe is located just behind the frontal lobe and it plays important roles in touch perception, the integration of sensory information and in visual perception of spatial relationships among objects (visuospatial processing). In the language dominant side of the brain (the left side for most right-handed individuals), the parietal lobe is also involved with language, planned movements such as writing, as well as mathematical skills. What are Parietal Lobe Seizures Like? Since the parietal lobe involves the processing and integration of sensory and visual perception, seizures originating from the parietal lobe can involve both sensory and visual sensations. Seizure duration varies, from a few seconds in some patients to a few minutes in others. The following are the different types of symptoms associated with parietal lobe seizures: Read the rest of the article HERE to find out more.

One other thing I did learn from researching other sites is that if damage is sustained to the Parietal Lobe, a person would most likely have difficulty reading, recognizing people and objects, and having a comprehensive awareness of his or her own body and limbs and their positioning in space. For those with traumatic brain injuries to this area, the ability to multi-task is reduced or eliminated, as is mathematical ability and recognition of the difference between right and left. To research more on this please read the article HERE. 

Now some (but not all) of these sympoms I have begon to experiace lately. But not to worry, I'm just writing this article for the purpose of edgucation.
I do however encourage you to do your on independant research for yourself. I am not a doctor nor do I claim to be one.

I hope this article is helpful. Please share this if you would like.