Charles, an adult who has battle MS since he was 16, started a podcast, MSB Podcast, as a way to raising awareness about MS for youth. Since the start of his podcast in 2006, Charles has done almost 400 shows. He also studied media relations in college in order to deepen his understanding of where the media corporations were, what happened to people and how, and how to position himself and MSB Podcast in order to help MS patients. He wants to help all handicapped people by giving them a voice which is, sadly, never heard in the media.
He says that the creation of MSB Podcast has helped him deal with his MS instead of trying to “bury it in his past.” Before creating the podcast he said that he was in denial about his MS. He used to dance, play the guitar, and go on hikes and he thought that due to the several attacks that he has had due to his MS, the third of which left him walking on a cane, he would never do any of that again. Now he has learned to deal with the situation and learned to live his life with MS.
His advice to young MS patients is to “deal with the situation and your life will be better”. He says that they should especially watch what they eat by staying away from processed foods and genetically modified crops and eating healthy – such as organtic vegetables, meats from properly raised animals, free range fowl, and fish from rivers and oceans.
Jeff, a 36-year-old local TV commercial producer from Louisville, Kentucky, was diagnosed with Multiple Sclerosis on January 22nd, 2009. Although the last 8 months have been hard for him, he still has a positive outlook on his life with the disease.
Jeff started showing the symptoms of MS in late December of 2008. He was walking like he was drunk – staggering, stumbling, and falling over when he tried to walk. He was scared about these symptoms, so he decided to go to the doctor.
After several weeks of tests, including an M.R.I. test of his brain, a spinal tap, and electrodes tests, and worrying about what could possibly be wrong with him, Jeff learned that he had Relapsing/Remitting MS.
He then had to figure out a treatment plan with his neurologist. He started on solumedrol, which is a high dose of steroids, for 3 days. He has since then had 2 more steroid IV treatments to help with his day to day symptoms. He also has been on Betaseron shots every other day.
Jeff says that everyday he feels his MS – whether it is a tingling sensation in one of his limbs, a cold sensation on the right side of his face, or his left foot feeling like it’s asleep for hours. Since he has Relapsing/Remitting MS, he has minor symptoms for extended periods of time and occasionally he will have a flare up which will affect him for a few weeks.
He advises newly diagnosed MS patients that being diagnosed is not the end of world. He does advise them to educate themselves about MS.
He also says that the newly diagnosed should slow down and don’t overdo anything, but he still says that they have fun.
His fight with the disease has inspired him to create a blog, one that has received over 2,300 hits since he started it: http://learningtolivewithms.blogspot.com/. He says that blogging has been very therapeutic for him, and encourages other MS patients to read positive MS blogs or blog themselves.
He encourages those who have questions or want more advice to e-mail him at firstname.lastname@example.org
For those that love live music …
New Almaden Music Festival, a music festival benefiting MS Awareness, will be held in San Jose on Saturday, August 8th.
There will be performances by:
Medicine Road: 1:00 – 2:00
Taboo Voodoo: 2:20 – 3:20
Root: 3:40 – 4:40
Corduroy Jim: 5:00 – 6:15
Old Dead Bug: 6:45 – 8:30
Grampa’s Chili: 8:45 – 10:15
All Star Jam: 10:15 – 10:30
Donations will be accepted:
-For event: $15
-For Tamale Plate: $8
-For beer: $3
-For non alcoholic drinks: $1
-For t-shirts: $15
New Almaden Community Center
21727 Bertram Rd.
San Jose, CA
For those that love eating good food for a good cause …
Scott Weitze is hosting a Dinner party in San Francisco to raise money for MS research on Saturday, August 8th at 7 PM.
Different foods offered from a variety of resteraunts:
Range: Coffee-rubbed Pork Shoulder
Tartine Bakery: Morning Buns
Bi-Rite: Salted Carmel Ice Cream
Truly Mediterranean: Lamb Schawerma
Arinell’s Pizza: Wonderfully Greasy Pizza
Monk’s Kettle: Giant Homemade Pretzels
Ti Couz: Buckwheat Crepe
Dosa: Paper Masala Dosa
The cost is ~$28-32, with proceeds from this event going to The Myelin Repair Foundation, a non-profit medical research foundation dedicated to accelerating the discovery and development of effective treatments for millions suffering from multiple sclerosis.
Please RSVP by August 6th: http://www.facebook.com/event.php?eid=107891055278&ref=mf
Sonnia, who has battled MS for 9 years, has a positive attitude about her MS. Instead of letting the disease get her down, she fights to stay on her feet and lead an active life. She is a strong person, even raising her grand-daughter alone.
Her advice for those with MS is fight their MS head on and never let it get to you. As she states, “I will never give into MS. I fight every day … I will never let MS take me without a big fight!”
Morris, an 18-year-old from England who was diagnosed with MS 3 years ago, has a positive, spiritual outlook on his MS. As he claims, “Being Jewish, we strongly believe that everything that happens is for the best and that g-d does it through love.” His story of his past three years of MS reflect his great outlook on his life with MS.
Three years ago, during his last year in high school, he had trouble gripping his pen when he was trying to write during his exams. People did not believe that he was really having this problem, they thought that he was just triyng to get out of his exams.
Soon his problems got worse though, and he had to get help doing things like getting dressed. He went to his doctor, who dismissed these problems, claiming it was probably nothing. A few weeks later, his mother took him to the hospital where they tested him for various conditions.
From these tests, Morris was diagnosed with a condition that was not MS, that he was told would repair itself within a year. (Morris does say that MS was discussed as a possible condition, but that it had been dismissed.)
After this, Morris started college in Newcastle. After a few months, he had to go home for a short break because things had gotten bad. His mother especially noticed the change when he came back home from being out one night, and his legs gave out and he fell to the floor.
His mother again took him to the hospital and was adament that he needed to be rechecked. His tests started again, and after more blood tests, MRI scans, and a lumber puncture, he was diagnosed with MS. The morning after his diagnosis he was hooked up to a drip for a few days and was administered steroids. He was able to walk after a few hours.
Today, he takes daily copaxone injections and he hasn’t had an attack in three years. Although his leg can tire after long walks and he can have a “bit of a jumpy leg,” he still goes to the gym everyday along with working full time and having his own small vending business. He also sings at weddings with his father’s band.
His message to anyone who has MS or to anyone who has just been newly diagnosed is “don’t think the world has come to an end.” As he states, “My life has remained almost completely unchanged. I love my job and love life! It might be hard at the beginning to come to terms with, which of course is entirely normal, but once you get used ot the symptoms you will be able to lead a happy and fulfilled life. It is important to look after yourself, eat healthy, keep active, and get plently of sleep.”
Tara, a mother of three, was diagnosed with Multiple Sclerosis in March 2007. Since then she has had to deal with the multitude of symptoms that come with MS, and had to learn how to deal with how to live with MS.
She likens dealing with accepting her diagnosis to the stages of grief.
She says that first she went through denial, in which she felt the doctors were wrong and that MS was just an illness or phase and she would get through it.
Then, she said, came sadness. She said she was sad that she had MS and that she was scared of what the future held and the fact that she knew that she would have this disease for the rest of her life.
Then she dealt with anger. She was angry at the doctors because she felt they took too long to give her an answer, and she was also angry that this was happening to her.
She went through a “Why Me” phase for awhile before finally coming to the acceptance phase, although she says that she is not sure one ever truly gets through the acceptance phase.
As she states, “There are times that you accept MS because maybe things are under control or maybe you are learning to cope and deal with the symptoms, or the changes in your life that you have to deal with. However, every once in awhile there is a time that the MS sneaks up on you and all of a sudden you find yourself repeating all the grieving phases all over again.”
Her advice to newly diagnosed MS patients is to never give up or let MS control them. As she states, “There are times it will be stronger than you but keep fighting it.”
She also advises the newly diagnosed to learn everything they can about the disease, and take good care of themselves. She says that they should eat well, take vitamins, take time for themselves to relieve stress, and, most importantly, take their shots. She says that taking their shots is the only thing there is that will help protect them from permanent damage and will lessen the exacerbation’s.
She claims that having a positive attitude is key: “Don’t dwell on the bad stuff. Focus on the good and what you can do to fight MS.” She encourages young MS patients to find good support, which she says may be hard at times to find. She describes MS as an invisible disease which may be visible for only a few days in which MS patients may have trouble walking and need to use a cane or wheelchair, and then the next day they may be walking fine. “People don’t understand that,” she says, “They don’t see what is going on inside of you.”
She goes on the say, “Some family and friends will never understand nor try to understand, and they may leave your side. But your true friends and family will learn to understand the best they can and will stay by you. You can allow yourself to get angry at the disease but don’t allow yourself to be angry at the world.”
His father has been a hard worker all his life – from helping to build homes and run his father’s warehousing business (which entailed doing heavy labor) as a teen while starting every game on his high school football team, to graduating from college with a 4.0. He also ran a trucking business for years.
I have started this blog in order to reach out to college-aged students who have MS, or have family members or friends with MS. I know that young people can feel helpless or scared when they get diagnosed with MS, so I hope that this blog will be a place where young people can find stories about those affected by MS and how they dealt with it, receive mentorship from older people who have had MS for a long time and have advice they can give younger people who have just been diagnosed or who have only been living with the disease for a short time and who have questions, hear about different media forms that relate to MS, and provide them the inspiration they need to have a positive outlook about their life even if they are affected by the disease.