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CHAMPIONS TACKLING MS - AWARDS Dinner, Honoring Aaron Boster, MD and Jon e. Glaser, DDS - now open for registration. Visit www.events.msvn.org
Saturday, June 28, 2014
MS patients in B.C. now have access to two oral treatments subsidized by the provincially funded drug program Pharmacare.
They mark an advance over injections and IV, says advocate
More than 12,000 multiple sclerosis patients in B.C. now have access to two oral treatments subsidized by the provincially funded drug program Pharmacare.
The latest entry approved this week for reimbursement is dimethyl fumarate (trade name Tecfidera), a drug that can be used on adults with relapsing-remitting multiple sclerosis, by far the most common sub-type of the disease.
Last spring, fingolimod (trade name Gilenya) was also approved by the province. If taken twice a day, the full cost of Tecfidera would be about $25,000 a year; Gilenya about $33,000, according to Pharmacare’s background information on the drugs.
“I think it’s significant because the other treatments thus far are injections or infusions (delivered intravenously) which are very invasive,” said Suzanne Jay, communications director for the MS Society of Canada, B.C. region. “It’s a tremendous relief to people to have the option of a pill.”
Canada has one of the highest rates of MS in the world with about 100,000 patients across the country.
Friday, June 27, 2014
A writer with MS shares what she has learned from others as she gathers stories about supporting someone with a chronic illness.
By: Jan Goben
When you find out someone you care about has multiple sclerosis, there are ways you can help them, and things you may want to avoid doing.
Of course, everyone is different and you will need to use your discretion with each person. But when you approach someone with tears in your eyes and say, “I’m praying for you,” it can leave him or her surprised – shocked, even. When this happens to me, I wonder if this person has heard something that I don’t know: Am I dying? Well, no, I’m not.
Whether someone is dealing with MS or another disease, there are many ways to express your support. Go ahead and pray for your friends if you choose, but when you see them, usually a smile would be a good way to greet them. Here are some other ways you might help make your friend feel better:
Get in the Driver’s Seat
Offer to take your friend on a drive somewhere. One day, go to the farmers’ market to buy some oranges. Another day, your friend may say, “No, let’s go to the river.” Flexibility is precious. Go ahead, drive to the river and walk along the walkway, where he or she can hold the railing, or the fence – someone with MS can feel strong as they hold onto a railing that gives balance and allows them to take good strides.
Or maybe your friend wants to just sit in the car, windows open, and breathe in the fresh air. And listen to the radio. Or sing songs! Nurturing someone's soul can go a long way toward making them feel better. Bring a good book you've read recently.
Say Something Nice
Tell your friend how good they look, but remember that doesn’t mean they aren't feeling weak or sick, or don’t wish they had the strength they used to have. Go ahead and say, “You look great!” But add, “I know it's hard, but I'm proud of you for working so hard to keep your spirits up when it can be a depressing time.” You are telling your friend that they look great, but you're not dismissing the fact that they don't always feel so great.
“Sometimes you just have to swear!” This comes from a woman who was helping her friend through her MS diagnosis. Strong language has a way of releasing some of the energy that has been held in because of the build-up of pain in the body. While they may not need to swear, the idea here is to allow your friend to express emotions vigorously while they are with you.
Run a Bath
Soaking in warm water can help the muscles relax and lets the mind float away. Every person with MS has different experiences, and to some, warm water can aggravate symptoms and is unwelcome. But other people say they love the idea of a close friend helping them into a tub, so that they don't have to worry about feeling modest. For some, there is nothing as heavenly as floating in warm water and staring up at the blue sky (or at least the bathroom ceiling.)
Pick up the Phone
Don't be afraid to call. Many people have said that once their friends heard about their diagnosis, they suddenly disappeared. A simple phone call shouldn't be scary – nothing is expected other than, “Hello! How are you doing? I was just thinking of you and wanted to say hi.
Do a Chore or Two
Cook and clean for the person you care about. What does that person love to eat? Chocolate chip cookies? Cornbread? Make a treat for someone special and you will always be thought of fondly.
Help someone in their garden. Bring some tulip bulbs to plant along the fence. Maybe sunflower seeds – something he or she can watch as it grows.
Or help your friend paint that table they've been planning to paint for quite a while now – it’s not a huge project. When someone feels so sick and weak and low-energy, it can mean so much when you show up and spend some effort to help with something. That project probably doesn't feel like a huge project to you, but may be a huge project to someone else
Help Maintain Status Quo
This is something I’ve heard from different people with different diseases, to different degrees, and in different ways: “Most of all what helped was normalcy. I kept working through my treatments. My husband worked and my children kept on going to school. I kept routines. My husband and I walked daily. I consciously closed the door on fear every single day by reminding myself of the positives. I did things that made me happy – listening to favorite music, repeating (to myself) favorite quotes, taking photographs, spending time outdoors.” Helping your friend keep things as normal as possible is a great gift.
And finally, don’t be afraid to ask that someone you care about, “How can I help?” It’s the best way to find out what he or she really needs.
Jan Goben is writing a book about ways people can help out those with MS and other diseases. If you would like to tell about the best help you have received or other ways to help, please email her at email@example.com. (Last reviewed 7/2010)
The cooling vest program for the MS Foundation (MSF) has ended, but the MSAA (MS Association of America) still has there free cooling vest program going on.
Check their website at http://mymsaa.org/msaa-help/cooling/
Thursday, June 26, 2014
MEDICAL MARIJUANA GAVE ME MY LIFE BACK!
When I was 19 I smoked marijuana for the first time. I remember cruising with my primo and some homies and they said they were going to get high. I was scared I had never tried it and didn’t know what it would do to me, but I didn’t want them to know this so I asked if I could try. When it was my turn to hit the joint I inhaled but not into my lungs just into my cheeks. One of my homeboys laughed at me and showed me the proper way to inhale. I started coughing and thought I was going to suffocate. But lo and behold I survived. We sat there in the car smoking it out. When the joint was gone I sat there waiting for something to happen. I was more talkative while everyone else was quiet.
Weed made me talkative and not only that, it relaxed my body. I had never felt better. The pain that I was already used to slowly went away. That day was one of the best days of my life I had no pain. I became a pot head. My family disapproved so I kept it hidden. For years I smoked the only thing I didn’t like was it sometimes gave me a headache.
When I turned 20 I became pregnant with my 3rd child and decided it was time to “grow up” and quit smoking. I had a well-paying job and my husband and I had just bought our first house. Even though life was going good I was constantly in pain. I kept going to my doctor over and over only to be told it may be psychosomatic systems caused by stress. Then I was finally diagnosed with Multiple Sclerosis after years of testing. The doctors started me out on so many medications I can’t even remember half of the names but I do know most of them were for opiates for pain.
I had to go on medical leave and eventually quit my job because the opiates left me out of it and not taking them left me in constant pain. Each job I had would follow the same suit. Finally I was approved for disability. I read somewhere that Medical marijuana could be used for Multiple Sclerosis. I had “grown up” from that lifestyle and was kind of embarrassed to even think about getting high again. I was at a crossroads.
One day I woke up with one of the worst pains MS can bring trigeminal neuralgia. My husband saw how much pain I was in and remembered me telling him how marijuana had helped when I was younger. He went out and got me some. Yes it was illegal but it was something I really needed at that moment. I was in so much pain I couldn’t even think, let alone smoke by myself. So Joe helped me by giving me a shotgun hit, this means he took a hit and put his lips on mine and blew it into my lungs, all I had to do was hold it in.
After a few hits I slowly felt my face begin to loosen up. My muscles were no longer as tense and the pain was become bearable. That was the day my old views on marijuana being a drug that only hippies and teens used changed. I was ready to apply for my medical marijuana card. The process was difficult for me at first because I lived in a very very small town where all the doctors had agreed that they would not allow their patients to use marijuana medically. I felt so depressed. The doctor I asked to help me get certified instead offered to prescribe zanax and Oxycoton. I was disgusted by the fact that he felt it was ok to put me on addictive medications instead of this wonderful gift created by God.
I began researching ways I could get certified without including my family doctor. I found a new doctor at www.azmmjcc.com this wonderful clinic helped me by getting all my records from all the doctors I had been to. They then evaluated me themselves and determined I met the qualifications and approved my card.
It cost $150 for all the fees but it was very worth it. The first time I smoked medical marijuana I expected it to be exactly like the “black market” (lol) variety, but it wasn’t it was 20 times better! It took one hit to get me high. Just that one toke made my muscles relax and all the pain leave my body. I had bought Super Silver Haze a strain specifically for MS. It gave me energy and made me be able to think clearly. After that first high I knew I wanted to be an advocate for medical marijuana. I no longer was tired, groggy with medicine head all the time, now I was alert, energetic and pain free. That is why I say Medical marijuana gave me my life back.
Another positive thing about medical marijuana is it has a clean taste and doesn’t make me cough. The buds are bigger than regular buds and rarely have seeds. The leaves are sticky and flaky and very potent. I never get a headache with medical marijuana. The downside of medical marijuana is it is expensive what I get for $20 at a dispensary I could get for $10 on the street (Reggie aka black-market weed) but I guess if I really think about it, it’s not bad because it is way better than the strains on the street. I love my medical marijuana. © 2013 April M. Barbosa
Source: MS NewsChannel
Wednesday, June 25, 2014
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REALLY? – But You Look SO GOOD! - a New MS Education program scheduled for August 9th in Pensacola, Florida
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Tuesday, June 24, 2014
Evolution of multiple sclerosis treatments: an interview with Mike Panzara, Head of MS & Neurology Clinical Development, Genzyme
and Neurology, Genzyme
Please can you give a brief history of multiple sclerosis (MS) treatments?
How has our understanding of the causes of MS changed over this time and what impact has this had on MS management?
By Jeri Logemann, Ph.D., Charles A. Stewart, M.D., Jane Hurd, MPA,
Diane J. Aschman, MS, Nancy L. Matthews, MA
Since Maxine especially enjoyed sitting with her special friends at dinner, she was very concerned when she began to experience prolonged coughing fits at the table. At first she thought the problem might be simply trying to talk, eat, and breathe at the same time – so she decided to listen more and speak less. Things got better for a while, though her friends did notice how quiet and subdued she seemed.
Eventually, Maxine began to skip going to dinner and ate in her room instead. She also began to have difficulty swallowing her medication and vitamins. Sometimes she needed a whole glass of water to get them down. Worried, she began to have trouble going to sleep, which made her look tired. This change was very apparent to Maxine’s daughter when she came to visit from out-of-state. Maxine had always been so upbeat and positive. Now, for the first time, she seemed confused and depressed.
What we don’t know can hurt us.
Dysphagia is the medical term for difficulty or inability to swallow. Although it’s rarely talked about, dysphagia can have an immediate negative impact on quality of life. Eating, after all, is a pleasurable group activity. A good meal satisfies more than just the appetite. This may be especially true for residents of independent or assisted living communities, for whom mealtimes are a highlight of the day. Beyond the social issues, dysphagia can also have serious health-related consequences, including malnutrition, dehydration, and aspiration pneumonia.
Yet difficulties in swallowing are not a natural result of aging. They are treatable and preventable, with recognition of the problem as the first step. However, there is evidence that dysphagia is often undiagnosed or untreated: a recent study in Los Angeles County found incidence of swallowing issues in approximately 11 percent of seniors in assisted or independent living facilities. Administrators in these facilities confirm that residents’ swallowing disorders are often unnoticed until the condition has become fully established. At that point, a feeding tube may become necessary. As a result, the resident may need to be transferred to a skilled care environment where appropriate support can be provided. Ignored or unidentified, dysphagia can lead to a basic loss of independence and self-sufficiency.