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Cathy Chester- Did you ever hear the question, “If you could have anyone sit at your table, alive or dead, who would you choose?” When asked this question I’d usually answer with a variation of people like Eleanor Roosevelt, Cary Grant, Joan of Arc, Abraham Lincoln, Golda Meir, Mother Teresa, Albert Einstein and Frank Sinatra. Quite a group, don’t you think? After learning that the Multiple Sclerosis International Federation declared May 27 as World MS Day by asking “What makes you #strongerthanMS?” I asked myself who would be at my MS table. I began to wonder what helps make a person with... Read more
Matt Allen G- I have had my eye on a new medication/therapy being worked on by Biogen Idec (the makers of Tysabri, Avonex, Rituxan, Tecfidera, and Fampyra) that is currently being called Anti-Lingo-1. This medication caught my attention because it’s goal is to remyelinate (rebuild the protective layer of fat called myelin that insulates our nerves but are attacked by Multiple Sclerosis) nerves in the central nervous system (CNS). Pretty much all therapies so far have taken the approach of trying to prevent antibodies from destroying myelin in the first place but Anti-Lingo-1 aims to create new myelin to replenish the myelin that... Read more
Kim Dolce- Just get over it. It’s in the past, forget about it. These are shaming, dismissive words, as advocate/songwriter Michael Skinner so eloquently points out and explores in his support work.1 We’ve all heard some version of this about a tragedy, a drama, an injustice. Like a scolding older sibling, we’ve even taken ourselves aside and told our infantile alter-egos to buck up. It’s a pop psychology anthem for how to cope with the ever-accumulating baggage we all collect if we live long enough. Life’s baggage consists of relationship conflicts, divorce, having children, deaths of loved ones, job loss, bankruptcy, aging, and... Read more
Stephanie Butler, RN, MSCN- I’m a few years into the MS game now, and I often find myself exchanging e-mails with people who have just been diagnosed. I never hesitate to extend a helping hand and a few words of advice, especially since I was on the receiving end not too long ago. I’ll never forget the people (some of whom were complete strangers) who were kind enough to talk to me, and help me through that initial period after diagnosis. My hope is that I can pay it forward as much as possible. Here are my 5 favorite pieces of advice for someone who is newly... Read more
Cathy Chester- “Let us tenderly and kindly cherish, therefore, the means of knowledge. Let us dare to read, think, speak and write.” ~John Adams We’ve always known that more women than men are diagnosed with Multiple Sclerosis. According to new data reported on the website Advances in Multiple Sclerosis (AIMS), women are diagnosed three times more than men. So AIMS is, well, taking AIM to address this issue by providing a place for women to go to learn as much about their disease as possible. Created by The Consortium of MS Centers (CMSC), The France Foundation and Nurse Practitioner Alternatives (NPA), the... Read more
Donna Steigleder- If I’m going to be away from home for any length of time, I try to arrange for someone to stay with Lynn for most of the time that I am away. I sometimes have to leave before the person staying with him can get there or they have to leave before I can get back. That was the case this week. I had to go into work. The person staying with Lynn was coming at 11:00 and leaving at 2 so I knew he would be home alone for at least an hour and a half since the meeting... Read more
Steve Woodward- Well as precisely nobody will have noticed, I’ve been a wee bit quiet on here recently. I’ve had a few MS-related incidents which have knocked me back a bit – but I’m sure you’ll know all about that sort of thing! Firstly in a cold snap at the start of the year I learnt a valuable lesson (which is so obvious I’m still slapping my head at my idiocy): temperature sensitivity goes both ways, and symptoms can flare up in the cold as well as the heat. In my case it was a full-on 24-hour pseudo-relapse – a bit of... Read more
Kim Dolce- “These boots were made for walking.” – Song by Lee Hazlewood, featuring Nancy Sinatra’s vocals and go-go boots. “You’ll never walk alone.” – Lyrics by Oscar Hammerstein; Jerry Lewis sang this song during his telethon to the little boys on stage that had Duchenne Muscular Dystrophy. “If I could walk that way I wouldn’t need the talcum powder.” – Groucho Marx Walking is the one thing humans totally take for granted. When we get sick or injured, our fear of losing mobility is rivaled only by our fear of death. When Multiple Sclerosis starts zapping our legs, we search desperately for... Read more
Ashley Ringstaff- I know that I’ve thought about this in the past… and some of you probably have too. I think the general population is worried about what the future might hold. But that’s reality isn’t it? However, adding Multiple Sclerosis, or any chronic illness for that matter, into the mix… and your worries about the future all come to you and slap you in the face, or at least that’s what they did to me. I can tell you that it’s okay to be scared… I’m a very strong willed person (a.k.a. stubborn) and I don’t like to show any sort... Read more
Laura Kolaczkowski- There has been quite a bit of exciting news from the American Academy of Neurology (AAN) conference this year; a lot of it has been about new ways of looking at existing drugs. A study that has my particular interest is a look at natalizumab dosing and if it can be given less frequently and still be an effective multiple sclerosis disease modifying therapy treatment. Before you scramble to figure out what drug that might be, this is the chemical name for the MS treatment Tysabri, the infusion drug used by so many of us. The recommended dosing for Tysabri, manufactured... Read more
Cathy Chester- I’ve been living with Multiple Sclerosis for half of my life and sometimes I forget what it was like to be newly diagnosed. It’s not that I forget how I felt; it’s simply that 28 years is a long time ago. And sometimes it feels like 5 minutes ago. I remember how scared I felt before my diagnosis, and how unsure I was that all of the tests my doctors were prescribing would somehow tell them I had something very specific. Numbness? Fatigue? Weakness? What did those symptoms mean? Would the doctors be able to put a name to what... Read more
Lisa Emrich- Often, diseases do not exist in isolation. Sometimes individual diseases may be correlated (or connected) in someway, but other times they are completely unrelated and just happen to exist at the same time in the same person. The simultaneous existence of two or more diseases is called comorbidity. For example, if you are diagnosed with MS and arthritis, you have a comorbidity. As part of the MS Comorbidities Project, an international team of researchers conducted a systematic review of the medical literature regarding the incidence and prevalence of specific comorbidities in MS. The review includes 249 studies conducted over a... Read more
Laura Kolaczkowski- Are you old enough to remember the song The Name Game, where letters in names were replaced with other letters and you came up with a nonsensical line such as this one for the name Shirley – Shirley, Shirley bo Birley Bonana fanna fo Firley Fee fy mo Mirley, Shirley! Those names made out of Shirley are much like what I’ve been experiencing this week. For some reason I lost the proper names of many long time friends and even family members, and have been creating nonsense names in their place to fill in the gaps. Here’s an example of... Read more
Donna Steigleder- It’s funny how words or pictures will bring back such vivid memories. The Cultural Arts Department at work sponsored a poetry/prose writing contest recently with the theme, “Rhythm.” I don’t usually enter such contests but when I thought about the theme, it brought back memories of standing next to Lynn’s bed while he was in the ICU about three or four years ago. That year was terrible. Just after Thanksgiving, Lynn was admitted to the ICU due to a urinary tract infection gone wild. He had been using an external collection device instead of an internal intermittent catheter thinking it... Read more
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Stop me if you’ve heard this
I thought I should contribute something to the group, as I’ve found a great deal of advice and help from others in these pages, so thank you all! Right, I thought – oh, actually I may have told the tale of my own diagnosis already, and I don’t want to repeat myself, so by a process of overthinking, I find myself here again, feeling blank. The battle with Writers Block is something I experience with or without MS,and like so many other things, I have to fight to recognise it for what it is, rather than just put it in...
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