Saturday, December 29, 2012

Organization and Sanitation Products for Incontinence


One thing that I have started doing with my incontinence products is finding a way to keep everything nice and organized. I dicided to go to Wal-Mart to try and find something for this, because all my adult diapers and other things were just stacked on my dresser. 
    I baught two Sterilite 3 drawer Carts to organize my things. I have a place for everything now. Since I have two I took the weels off of one cart and stacked them together to make it a 6 drawer cart. So in one draer I keep me disposable underpads, then the booster pads, disposable underwear, the next few drawers dispoable briefs, and at the top, gloves, wipes, and cream to protect against rash.


 One other thing I dicided to purchace  is two small trash cans with lids, to keep areas sanitary and free off jerms and bacteria.



Monday, December 17, 2012

Using A Rollator Walker

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.

      

Monday, December 10, 2012

Shirts, Buttons, Mugs and More




My mission here is to continue to bring you more great content. I enjoy bringing you an insite into my life with Leukodystrophy. I have alot of readers as well as a lot of listeners on YouTube. I would like to continue this but I'm having to raise some funds to keep my internet bill paid. So I am selling some uniqu items on Cafe Press to help fund my outreach. I am selling T-Shirts, Mugs, Buttons, and other cool things. As you can see that all my items have a Christian theme to them, that is because I'm not just a person with epilepsy, I'm also a firm believer in the Lord Jesus Christ. So the proceeds from the sales will go twards keeping me online and also giving out of free Bibles if you would like a Bible please e-mail me brotherjohnspeaks@gmail.com Some of you may think that I may make a killing on all these items I sell but the truth is that I only make about $2.00 on each item after Cafe Press gives me my comission. I have to earn $25.00 before they will release funds to my PayPal account. I have picked out items to sell in my store that are for any buget so feel free to browse around and find an item that is right for you. Click Here to Shop

                    

Sunday, December 9, 2012

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.

   

Friday, December 7, 2012

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.

    

Having A Seizure In Public

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.

Tuesday, November 27, 2012

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.


Monday, November 12, 2012

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.

Sunday, November 11, 2012

Product Review: Pro Care Adult Wipes

Today I will be doing a review that is very inportant to skin heath for those who are incontinent. To keep your skin clean you must have the propper adult wipes. The brand I have most recently found useful is Pro Care Wipes.

Why use Pro Care Wipes instead of a traditional wash cloth?

1.Single hand dispencing, helps to reduce cross contamination.

2.Alcohol-free, latex-free & Clinically tested.

3.Rinse free

Ingredients: Water, Popylene Gycol, Tocopheryl Acetate, Phospholipid CDM, Aloe Vera Gel, Disodium EDTA, Phenoxyethanol, Methylparaben,
2 Bromo 2 Nitropropano 1, 3 Diol, Fragrance, Disodium Phosphate.

This is a great product to use for those with incontinence. It keeps skin clean and safe from skin iritation and rashes.

Thursday, November 8, 2012

Famous People with Epilepsy


Famous People With Epilepsy Include:

  
Hugo Weaving - Hugo Wallace Weaving (born 4 April 1960) is a film and stage actor, as well as a voice actor. Weaving was born in Nigeria. He spent his childhood in South Africa and then moved to the United Kingdom in his teens. He moved to Australia in 1976, where he attended Sydney's Knox Grammar School. Weaving later graduated from Australia's National Institute of Dramatic Art in 1981. When he was 13 years old, Weaving was diagnosed with epilepsy. Due to the prospect of seizures, Weaving does not drive cars. He has never married and lives with his partner Katrina Greenwood.
  
Vincent van Gogh - (1853 - 1890) Vincent Van Gogh was a passionate artist who strongly believed that all expressions should be expressed through colors. He was heard saying that all he ever wanted to do with his life was paint all that came to his mind. He also said that when he would be deceased he would look back at his life and cry for thepaintings that he could have created. Being the loving and creative man that he was his epilepsy had once caused him to run after his friends with an open razor, he ended up cutting his own ear lobe off. He eventually shot himself "For the good of all" leaving behind all the colorful paintings he had made.
  
Sir Isaac Newton - (4 January 1643 - 31 March 1727) A very important scientist who is responsibe for founding the three laws of motion along with studies concerning Universal Gravitation. He studied many scientific disciplines but mainly stayed inside the field of mechanics. It is said that Newton had mainly discovered gravity by examining a falling apple, that would have been one of the major reasons for him to start his researches in the subject. Was thought by many a product of psychosis but he may just have been in his right mind.
  
Neil Young - (born November 12, 1945, Toronto, Ontario) A musician known for his meaningful lyrics and also a spokesman for environmental issues, Neil Young has been labeled one of the greatest guitarists of his time. When he was young his parents divorced and Neil was confronted with many diseases simultaneously. The obstacles in which he faced included Epilepsy, Polio and Diabetes which he did eventually all overcome. Since then he has been a peacekeeper through music and is ever present in the fight for justice and all that has to do with a more peaceful world.
  
Napoleon Bonaparte - (15 August 1769-5 May 1821) An Italian General with many victories, also later becoming 1st consul of France. He played a great role in many wars and was a shining sword of honor for all of the French. Since his youth Napoleon had always given all his efforts to rise in military grades until he finally became emperor seated on his imperial throne. Many books today claim that Napoleon Bonaparte might have suffered from epilepsy throughout his lifetime. Although many have stood up to say that there is no valid proof and that it is but a myth.
  
Agatha Christie - Dame Agatha Mary Clarissa, Lady Mallowan, DBE (15 September 1890 - 12 January 1976), commonly known as Agatha Christie, was an English crime fiction writer. She also wrote romance novels under the name Mary Westmacott, but is best remembered for her 80 detective novels and her successful West End theatre plays. Agatha Christie is world famous for her brilliantly crafted mysteries. During the 1920s and 1930s, she created the enduring detectives Hercule Poirot and Miss Marple. The details of Christie's personal life, however, have rarely been documented.
  
Charles Dickens - Charles John Huffam Dickens, FRSA (17 February 1812 - 9 June 1870), pen-name "Boz", was the foremost English novelist of the Victorian era, as well as a vigorous social campaigner. The Victorian author of such classic books as A Christmas Carol and Oliver Twist had epilepsy, as did several of the characters in his books. The medical accuracy of Dickens's descriptions of epilepsy has amazed the doctors who read him today. Through some characters in his novels, Charles Dickens recorded observations on the nature of epileptic seizures, their causes and provocation, and their consequences. Three of his main characters, Monks, Guster, and Bradley Headstone, had seizures which Dickens realistically described.
  
Alexander the Great - Alexander the Great (July 20, 356 BC - June 10, 323 BC), also known as Alexander III, was an ancient Greek king (basileus) of Macedon (336-323 BC). Alexander died after twelve years of constant military campaigning, possibly as a result of malaria, poisoning, typhoid fever, viral encephalitis or the consequences of alcoholism. Born in Pella, capital of Macedon, Alexander was the son of King Philip II of Macedon and of his fourth wife Olympias, an Epirote princess. Alexander the Great had epilepsy, however at during his time epilepsy was known as "the sacred disease" because of the belief that those who had seizures were possessed by evil spirits or touched by the gods and should be treated by invoking mystical powers.
  
Danny Glover - (Born July 22, 1947) A great actor in both Lethal Weapon with Mel Gibson and Predator 2. Danny Glover suffered dyslexia at school when he was younger and the school staff would label him retarded. Danny Glover also had epilepsy and at an appearance on the Rosie O'Donnell Show told how he had developed epilepsy at the age of 15, and in one cross-country trip with his family had experienced six seizures in a row.
  
Alfred Nobel - Alfred Bernhard Nobel (October 21, 1833, Stockholm, Sweden - December 10, 1896, Sanremo, Italy) was a Swedish chemist, engineer, innovator, armaments manufacturer and the inventor of dynamite. By the time of his death he held more than 350 patents and controlled factories and laboratories in 20 countries. William Gordon Lennox wrote that "Nobel was subject to migraines and convulsions from infancy." Nobel had epileptic seizures as a young child, which later made him write of convulsions and agony in a poem. The foundations of the Nobel Prize were laid in 1895 when Alfred Nobel wrote his last will, leaving much of his wealth for its establishment. Since 1901, the prize has honored men and women for outstanding achievements in physics, chemistry, medicine, literature, and for work in peace.
  
Michelangelo - (March 6, 1475 - February 18, 1564) The sculptor of many of the most renowned sculptures of all times. Michaelangelo was a respected renaissance man only rivaled by Leonardo Da Vinci. Striving to excel in numerous disciplines he is also responsible for the paintings inside many famous cathedrals and the construction of some of the most respected buildings. Projects such as St.Peters basilica, basilica of San Lorenzo and the Medici Chapel which will forever leave Michaelangelo and his works a legend in all history.
  
Leonardo Da Vinci - (April 15, 1452 - May 2, 1519) The man responsible for some of the greatest religious paintings in history Leonardo Da Vinci excelled not only in painting but in numerous other disciplines as well. He was a Tuscan polymath: architect, botanist, musician, scientist, mathematician, engineer, inventor, anatomist, painter, sculptor, and writer. His most famous work is definetely the paintings of both Mona Lisa and the Last Supper of Jesus Christ which have both been the most reproduced religious paintings of all times.
  
Julius Caesar - (July 13, 100 BC - March 15, 44 BC), One of the most influential men in world history, Caesar participated in the army with distinction constantly excelling in leadership skills. He had a ruthless personality and thought of himself as far superior. A perfect example of this is when Julius had gotten captured by pirates, the pirates demanded a ransom of twenty talents of gold. Julius then laughed and demanded that they ask for fifty, he then promised them that he would chase them down once freed. Which he did, raising a fleet to chase the pirates and capture them. He then crucified them under his law once he had caught up to them.
  
Edgar Allen Poe - (January 19, 1809 - October 7, 1849) Edgar Allen Poe is a member of the Romantic Movement, mostly as an author and literacy critic. He has written books and short stories and he is best known for his macabre and mysteries, he is the one who invented the Detective-Fiction genre. For many years people have referred his mental problems to alcohol and drug abuse but, today many believe that he was not well diagnosed. Many now believe he may have been epileptic which would sometimes explain his frequent confusion.
  
Aristotle - (384 BC - 322 BC) Aristotle was a Greek philosopher writing on many different subjects including zoology, biology, ethics, government, politics, physics, metaphysics, music, poetry and theater. He was also a great teacher for Alexander the Great. Aristotle was one of the first to point out that epilepsy and genius were often closely connected. He found that the seizure disorders may have the ability to increase brain activity in specific places and maybe also enhance a persons natural abilities to a certain extent.
Theodore Roosevelt - 26th President of the U.S. (October 27, 1858 - January 6, 1919) Roosevelt was a soldier , historian, explorer, naturalist, author, and Governor of New York later becoming the President of the United States at the age of 42 years old. He was well known for having a vast range of objectives and achievements, all with an energetic determination and a hard ''cowboy'' persona. He was subject to epileptic seizures, his eyesight was bad, and he also suffered from asthma, but was still a man of courage and strength appreciated by many.
  
Alfred the Great - (c. 849 - 26 October 899) Alfred the Great was king of the Anglo-Saxon kingdom of Wessex from 871 to 899. In his life Alfred highly valued education and wanted his kingdom to be rich with knowledge. He improved his Kingdom's law as well as it's military structure. Although Alfred had epilepsy it did not keep him from doing good for his kingdom and making one of the best books of laws of his time. He was very catholic and by the time of his death he had helped increase the quality and amount of churches and schools from all over his lands.
  
Bud Abbott - (October 2, 1895 - April 24, 1974) Bud Abott was an American producer, comedian and actor. Many times did he try to hide the fact that he was suffering from epilepsy. His whole life he had been subject to the disease and many times he tried to control it with alcohol. His alcoholism was getting worst as time went by and he eventually went bankrupt due to tax issues with the IRS. Short after going bankrupt Bud lost his longtime partner Lou Costello when he died from heart damage. Bud then tried to take another shot at his career with Candy Candido but was not successful. Bud Abott died of cancer on April 24, 1974 after suffering from two consecutive strokes.
  
Lewis Carrol - (27 January 1832 - 14 January 1898) was an English author, photographer, mathematician, Anglican clergyman and logician. He has written several renowned books and his work has inspired many modern artists. His facility in wordplay would attract not only children but also some of the elite readers. He has written books describing minor epilepsy attacks and the dream worlds that some of them may bring a person to. Like the sensation of falling in a hole and everything around getting smaller or bigger. Not hearing or seeing the same and feeling as if your entire body is changing in a fraction of a second.
  
Richard Burton - (November 10, 1925 - August 5, 1984) Being at one time the highest paid Hollywood actor, Richard was well known for his distinctive voice. He was crippled all his life by epilepsy and was extremely deep into alcoholism to try and prevent the seizures. Eventually this led him to manic depression but he would never go to see a doctor because he did not trust them one bit. At times he seemed to be more scared of being crazy then having epilepsy. Throughout his entire life he had never went to get diagnosed by a doctor.
  
George Frederick Handel - (Friday 23 February 1685 - Saturday 14 April 1759) was a German-born Baroque composer who is famous for his operas, oratorios and concerti grossi. Since the 1960s, with the revival of interest in baroque music, original instrument playing styles, and the prevalence of countertenors who could more accurately replicate castrato roles, interest has revived in Handel's Italian operas, and many have been recorded and performed onstage.
Fyodor Mikhaylovich Dostoyevsky - (1821 - 1881) - Russian writer and essayist, known for his novels Crime and Punishment and The Brothers Karamazov. Dostoyevsky had epilepsy and his first seizure occurred when he was nine years old. Epileptic seizures recurred sporadically throughout his life, and Dostoyevsky's experiences are thought to have formed the basis for his description of Prince Myshkin's epilepsy in his novel The Idiot and that of Smerdyakov in The Brothers Karamazov, among others.
Charles V of Spain - Charles V (24 February 1500 - 21 September 1558) was ruler of the Holy Roman Empire from 1519 until his abdication in 1556 and also ruler of the Spanish realms from 1516 until 1556. Charles V suffered from epilepsy and from an enlarged lower jaw. He struggled to chew his food properly and consequently experienced bad indigestion for much of his life. also He suffered from joint pain, presumed to be gout, according to his 16th century doctors. In his retirement, he was carried around the monastery of St. Yuste in a sedan chair. He was greatly interested in clocks, instructing his servants to take them apart and reassemble them in his presence.
Pythagoras - Pythagoras was the first man to call himself a philosopher, ''lover of wisdom'' and was the most able philosopher among the Greeks. He was know as ''the father of numbers'' and greatly contributed to mathematics. It is even said that many of his ideas had directly influenced Plato. Many of his teachings were only passed down by some of his students, none of his work had seen the day and none can be sure of exactly how wise Pythagoras was. Although he had made huge contributions to both philosophy and religion in the late 6th century BC.
Hannibal - Carthaginian military commander and tactician, later also working in other professions, who is popularly credited as one of the finest commanders in history. He lived during a period of tension in the Mediterranean, when Rome (then the Roman Republic) established its supremacy over other great powers such as Carthage, Macedon, Syracuse, and the Seleucid empire. His most famous achievement was at the outbreak of the Second Punic War, when he marched an army, which included war elephants, from Iberia over the Pyrenees and the Alps into northern Italy.
Hector Berlioz - Louis Hector Berlioz (December 11, 1803 - March 8, 1869) was a French Romantic composer, best known for his compositions Symphonie fantastique and Grande Messe des morts (Requiem). Berlioz made great contributions to the modern orchestra with his Treatise on Instrumentation and by utilizing huge orchestral forces for his works, sometimes calling for over 1,000 performers.
James Madison - During his teens and early twenties, Madison complained of a voice impairment. This was a functional handicap that prevented his public speaking until age 30. Madison believed he would " have a short life due to the illness he believed was epilepsy.
Lord Byron - Baron Byron, of Rochdale in the County Palatine of Lancaster, is a title in the Peerage of England. It was created in 1643, by letters patent, for Sir John Byron, a Cavalier general and former Member of Parliament. Some biographies suggest that Lord Byron experienced epileptic seizures and in various passages he writes of symptoms reminiscent of epilepsy.
Louis XIII of France - (September 27, 1601 - May 14, 1643) ruled as King of France and Navarre from 1610 to 1643. Louis XIII ascended to the throne in 1610, at the age of eight and a half, upon the assassination of his father.
Margaux Hemingway - (February 16, 1955 - July 1, 1996) was an American model and film actress who appeared in several movies. She was born in Portland, Oregon, the sister of actress Mariel Hemingway and the granddaughter of writer Ernest Hemingway. She struggled with a variety of disorders in addition to alcoholism, including bulimia and epilepsy.
Martin Luther - (November 10, 1483-February 18, 1546) was a German monk, theologian, and church reformer. Luther's theology challenged the authority of the papacy by holding that the Bible is the sole source of religious authority and that all baptized Christians are a priesthood of believers. Luther had many documented illnesses, but any recurrent attacks were probably due to Meniere's disease.
Nicolo Paganini - (October 27, 1782 - May 27, 1840) was an Italian violinist, violist, guitarist, and composer. He is widely considered to be one of, if not the greatest violinist who ever lived and it is believed to he had epilepsy.
Paul I of Russia - Pavel (Paul) I Petrovich of Russia (October 1, 1754 - March 23, 1801) was the Emperor of Russia between 1796 and 1801. During his infancy, Paul was taken from the care of his mother by the Empress Elizabeth, whose ill-judged fondness allegedly injured his health. As a boy, he was reported to be intelligent and good-looking. His pugnacious facial features in later life are attributed to an attack of typhus, from which he suffered in 1771.
Peter Tchaikovsky - Russian composer of the Romantic era. Tchaikovsky, is believed to have had epilepsy. Pyotr began piano lessons at age five with a local woman, Mariya Palchikova within three years he read music as well as his teacher. Tchaikovsky died on November 6, 1893, nine days after the premiere of his Sixth Symphony, the Pathetique. His death has traditionally been attributed to cholera, most probably contracted through drinking contaminated water several days earlier.
Peter the Great - Peter I the Great or Pyotr Alexeyevich Romanov (9 June 1672 - 8 February 1725) Both Peter's hands and feet were small, and his shoulders narrow for his height; likewise, his head was also small for his tall body. Added to this were Peter's facial tics, and, judging by descriptions handed down, he may have suffered from petit mal, a form of epilepsy.
Robert Schumann - (June 8, 1810 - July 29, 1856) was a German composer, aesthete and influential music critic. He is one of the most famous Romantic composers of the 19th century.
Sir Walter Scott - (15 August 1771 - 21 September 1832) was a prolific Scottish historical novelist and poet popular throughout Europe during his time. Walter Scott survived a childhood bout of polio in 1773 that would leave him lame. In 1778 Scott returned to Edinburgh for private education to prepare him for school, he was now well able to walk and explore the city as well as the surrounding countryside. His reading included chivalric romances, poems, history and travel books.
Socrates - (470 BCE-399 BCE) was a Classical Greek philosopher. He is best known for the creation of Socratic irony and the Socratic Method, or elenchus. Socrates developed the practice of a philosophical type of pedagogy, in which the teacher asks questions of the students to elicit the best answer, and fundamental insight, on the part of the student.
Truman Capote - born Truman Streckfus Persons in New Orleans, Louisiana (30 September 1924 - 25 August 1984) was an American writer whose stories, novels, plays, and non-fiction are recognized literary classics, including the novella Breakfast at Tiffany's and In Cold Blood. Capote once said, "I don't care what anybody says about me, as long as it isn't true". John Knowles says that Capote "induced epilepsy himself by abusing his nervous system with drugs and booze" An autopsy showed Mr. Capote had an infection in his legs and signs of epilepsy, but no conclusive information was disclosed about the cause of the author's death.
Chanda Gunn - (born January 27, 1980 in Huntington Beach, California) is an American ice hockey player. She won a bronze medal at the 2006 Winter Olympics. As a female athlete with temporal lobe epilepsy, Chanda Gunn faces each day with a zest for life and the determination to live each day to its fullest. Gunn has received numerous awards, she is the first player ever to be named a finalist for both the Patty Kazmaier Award for the nation's best women's college hockey player and the Humanitarian Award for college hockey's finest citizen.
Dj Hapa - Diagnosed with epilepsy at age 17, HAPA was initially told he would not be able to attend college due to his condition. He attended UCLA on a Regents scholarship and today is the executive director of the Scratch DJ Academy.

Saturday, November 3, 2012

Staying Connected to the World Around Me

Since I have epilepsy I really don't get out much to socialize with others. When my wife is at work and my son is at School I spend a lot of time alone during the day. Think that the only time I ever get out of the house is to either got to the store or go to Church on Wednesday and Sunday. So the time I really get to socialize with others is when I'm on live video chat sites such as Stickam. Another great way I get to meet others is through YouTube, I have met so many interesting people on this site. I have also found that the internet is a great way to connect with others with the same condition as me. The internet is a great way for me to help educate others about Epilepsy. I am also a Christian and my time on YouTube has given me a lot of oportunity to share my faith with others. I think I would go crazy if I couldn't use the internet, it help me stay connected to the world around me.

Thursday, October 25, 2012

Seizures And Back Pain

One thing I have had to deal with in my life is severe back pain. After having all the covlsive seizure throughout my entire life it has really taken its tole ony my spine. Now that I am in my late 30's I have been having a lot of post seizure migrains. I have had to go to physical therapy several times throughout  my life because of this problem. The way it normaly works is that I will go to therapy for a while until everthing feels beter then in a few weeks everything hurts again. It is really bad when Medicade decides to drop me then I have to pay 15% of my bill. Normaly though I will deal with the pain when this happens. I just this year got my medicade rienstated so I'm gonna take advantage of this to get my therapy going again. Truely it is a pain in the but having back pain it seems to get worse every year.
    

Thursday, October 4, 2012

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.

Tuesday, October 2, 2012

Monthy Give Aways

Starting in November I will start having monthly givaways. The only thing you have to do is jion and follow this  blog. The give away for November is a purple (Give it to God) T-Shirt, purple is for Epilepsy awareness month. I will anouce the winner on my YouTube Channel on November 3, 2012. To jion go to follow button on the left side of your screan. I will try to  give some thing away every month if possible.

    If you don't win you can always purchase the shirt Here for only $12.99 plus S&H. 

Friday, September 28, 2012

New Epileptics 4 Christ Blog

Besides me being an Epileptic, I am also a Christian. That is why I have launched my Epileptics 4 Christ blog.  This is an outreach to people with epilepsy to share the gospel of Jesus Christ. On my new blog you will find my personal testimony.

   My relationship with Christ is a testimony to those who don't know the grace and love of a living God. I just want to share what Jesus has done in my life, as well as showing my knowledge of His word.

   I also would like to share the testimonies  of others who have epilepsy and other brain disorders who were touched by Jesus. So if you have a story please email it to me and I will share it on my new blog.
  brotherjohnspeaks@gmail.com 

    I will also be launching an new series on my YouTube channel soon in 2013 sharing my faith.

  There are a lot of new things the Lord has for me and I will keep you updated on the blog what I am up to. As far as this blog I will continue bringing you posts about epilepsy, product reviews, and epilepsy safety.

Tuesday, September 25, 2012

Epileptics 4 Christ

Hello it's brother John once again with another post. I just wanted to share something with my readers. Some of you who actually know me know that I am a Christian. Well anyways I had a vision from God to start group to outreach to Christians who have epilepsy both online and off. For fellow ship and prayer and also to outreach to those who don't know Christ. I also wan't to start a publication news letter from people who have epilepsy to others who have epilepsy to help give comfort to those suffering from the disease as well as sharing the gospel. Besides having epilepsy I am a very strong believer in the Gospel of Christ. My Lord and Savior Jesus is the only reason that I'm here today. With the form of epilepsy I have I'm not even supposed to be here, believe it or not I should be dead. That is why God has called me to write this blog, and to start this outreach.

  If anybody is interested in helping with this outreach please e-mail me brotherjohnspeaks@gmail.com please use the subject Epileptics 4 Christ

Monday, September 24, 2012

Electric Brain Shock

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.

Friday, September 21, 2012

Living Day to Day with Epilepsy

Living with epilepsy has been quite a challenge for me simply because every day is never the same. I never know if I'm gonna have a good day or a bad day, or if I'm gonna have 1 seizure or 20 seizures in a day. I have days when I feel great and other days when I feel crappy, every day is different. 

  There are several things I deal with on a daily basis. I have a VNS implant that sends an electrical current to my brain every five minutes. My sleeping patterns are all messed up so sometimes I get up on time or sometimes I sleep all day. A lot of times I have seizures during sleep, so when I get up in the morning I feel dizzy and disoriented. Because I have had so much seizure activity for so many years, my nerves are all messed up and I have urinary incontinence. Every day I have to wear adult diapers, I have to change them about  once every 
2-3 hours a day.

    I really enjoy the good days. On good days I clean house, do a little reading from my Bible, and take a long walk with my dog.
   
Epilepsy is a struggle, but I just try to take everything one day at a time.