For a bigger part of mylife I've had to wear a seizure helmet. Since 2009 I have baught about five different helmets including the most recent one that I have now. Most of the ones before were foam rubber or leather. The most recent one is a hard shell helmet with a foam rubber liner on the inside with hard shell ear covers.
The reason for the hard shell up grade was because aboutt a month a go I was shopping a Wal-Mart when all of the sudden I passed out on the floor. The next thing I knew was that I was waking up with a manager telling me that I had a seizure. He told me that I had fallen pretty hard, and man did I feel it the next couple of days. The next couple of weeks I was to scared to go anywhere by myself . This is when I decided to try and upgrade to a hard shell helmet. My reasoning was that this would be more durable, and it would make me feel more safe. I will begin to tell you that seizure helmets are not cheap. This particular helmet cost me about $470 thats including the shipping cost. Being someone who works in fast food, this was not easy to come up with the money. On the news I saw stories of how some people were able to get help using croudfunding services. One particularly was GoFundMe, so thats what I did I set up a page and in about a month I was able to get my helmet. I am so thankful that a lot of my friends and family could help me raise the money for my helmet. Now my brain feels a lot safer because of it.
Most of you who come here and read my blog know that I have seizures. The cost of me trying to keep myself healthy and safe can be rather expensive. Well just last week I passed out at Walmart and had a seizure I woke up later and the manager was standing over me and told me not to move and that I had a seizure. Thank God I had my foam rubber helmet on. I did however drift in and out of consciousness. The next day I had extreme headaches.
Now that I'm 40 I find that I have a need to be safer and protect myself fom injury. I have been wanting for some time to have a hard shell helmet, I believe that it is much more durable and will protect my head better than a foam rubber helmmet. I have beenn looking and pricing them out and the one I need with all the options I want the cost is around $470.00 and that includes shipping. I am in desperate need to be safe, I have set up a GoFundMe page for anyone who would like to help me. If I can I will try to keep everyone updated on how much money I have raised.
Recently because of dizzy spells and blackouts I have to use a Rollator Walker. I mostly use it when I go shopping, Church, and when I go for a walk. I love the fact that it has a seat, I can sit down on the seat and rest, that is why I asked for it. Because of my lightheadedness and dizzy spells I can't walk for far distances. Like I have said Leukodistrophy has started to take it's toll on my body. I have seen others with my disease in wheelchairs but that is something I want to aviod. I still want to be able to walk as long as possible. Difficult things for me to deal with having a walker are getting in the refreshment line after Church. Also at my age of only 37 alot of people stare at me when I go to the store. As things start to progress even though I get the looks and stares I'm still greatful that I can still get around even if it is with my walker.
Having seizures in a public place can be embarassing as I have found out just a few days ago. I was shopping with my wife when all of the sudden I had a small seizure in the checkout line at a thrift store. I am so glad that I was not alone that day simply because there is not a lot of people who know what to do in these situations. To all those who have epilepsy, I would say that if you have severe seizure activity, don't go anywhere alone. I myself already stay home alone everyday and still I don't feel safe. So I know not to go anywhere alone.
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.
Well it's been about three months now since my VNS surgery. I have had three adjustments to my implant for the stimulation. With each time I go the electric stimulation seems more and more intense. I am really hoping that they get the dose to where it needs to be soon. I was just in the ER for seizures this last weekend and today I had to go back for another adjustment. This time the stimulation was so strong it literally floored me. Later on I had to use the magnet to stop a seizure and it felt like my brain was being completely electrocuted and cooked inside my head. I almost wanted to cry it was that bad. I have felt tired and dizzy all day. Now the maximum level of stimulation is about 5 and I'm not even there yet. I'm only at about 2.5 and it's almost unbearable now. Now because the seizure activity I am wearing the helmet again.
I am so thankful that a lot of my friends and family could help me raise the money for my helmet. Now my brain feels a lot safer because of it.
