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Ending Up in a Wheelchair

Blog Summary

“Not all patients with MS end up in a wheelchair.” I first heard this phrase the day I was diagnosed. “I don’t want to end up in a wheelchair,” is something I soon started telling myself with alarming regularity. The terror of this thought was what got me to the gym, got me giving myself painful injections, got me scared into action. You’ve heard the refrain, you may have said it yourself. It’s no coincidence we all express our fear of decline using identical language: end up in a wheelchair. It’s an unhelpful, toxic mantra that reinforces what society wants us to believe about disability, that it’s a fate worse than death.
 
The troubling reality of MS is that a wheelchair is not the worst possible outcome. Sadly, advancing disease doesn’t always stop with the loss of mobility. That’s the bad news. The good news is, a wheelchair is not, in fact, the end. Many people live fulfilling lives with the assistance of a chair and other devices. Of course, the best news is that with today’s treatments, many will never require the use of mobility aids, but that’s a headline that already gets a lot of attention. For those who will need one, who happen to ‘end up’ here, the feeling can be one of failure, of being beyond hope, of being cheated of the promise that this wouldn’t happen. MS is full of hard truths. But continuing to push this softer narrative has consequences beyond hurt feelings...

Five Ways to Healthier Holidays

Blog Summary

Staying on a diet can be tough even under the best of conditions — which holiday gatherings of family and friends definitely aren’t. But there are ways to stay strong. Following are some tips that may help you steer toward healthier holiday eating...

From ECTRIMS: New Results on Gut Bacteria and MS

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The ECTRIMS meeting has been a great place to connect with researchers on what’s truly exciting in MS research. I’ve especially enjoyed hearing about an area of investigation that is moving forward quickly – from initial observations toward treatments or solutions for people with MS. From what I've heard this week, researchers who are looking at the gut microbiome and its role in the MS immune attack are doing just that.    Drs. Yan Wang, Lloyd Kasper and colleagues from Dartmouth Medical School and Eastern Washington University built on previous work, which had shown that modulating gut bacteria during MS-like disease in mice induced specific immune cells (called Bregs – or regulatory B cells), and these Bregs reduced disease severity...

Say “YES” To YOU!

Blog Summary

I’ll never forget him in his ill-fitting trench coat and his cartoonish large head towering over us, just a bunch of wide-eyed, snot-covered children at Tonawanda Elementary School. His name was Officer McGruff, the Crime Dog. He pointed his furry finger at us while an accompanying, un-costumed police officer warned us against the dangers of drugs. I looked up to McGruff. We had a bond. We understood each other. I knew this because a year or two earlier, I had won a safety poster drawing contest and was awarded with my very own plush McGruff doll. It may as well have been an official sheriff’s badge and a key to the city. I was now a safety expert. I took everything he stood for to heart. I mean, he had a trench coat and everything!

How does diet impact MS?

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It’s so interesting to see new studies on the potential impacts of diet on MS. Is there something people can eat, or stay away from, that would actually help make life with MS better? Studies presented this week at the annual meeting of the American Academy of Neurology (AAN) showcase this growing area of research, but did not all find positive results. That’s ok. All of these are arrows pointing us toward – or away from – solutions for people with MS. (Links are included to abstracts on the AAN site - access is free.) Walk down any grocery aisle and you’ll find products marketed as antioxidants.  Antioxidants block the action of “free radicals,” which are normal by-products of bodily processes that may cause tissue injury in MS. A poster presentation by Dr. Rebecca Spain and colleagues from Oregon Health & Science University reported promising results from a clinical trial of lipoic acid, an antioxidant supplement, in 51 people with secondary progressive MS... 

Studies advance emotional and cognitive health in MS

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Finding solutions that advance emotional wellness and cognitive function can make every aspect of living with MS better. As a clinical psychologist who has treated people living with this disease, I find it heartening to see how researchers presenting this week at the American Academy of Neurology’s Annual Meeting are propelling this search forward. Here is just a small sample of their work. (Links are included to abstracts on the AAN site - access is free.) Let’s start with cognition – half or more of all people with MS will experience cognitive issues at some point. The fact that there is such a thing called “cognitive rehabilitation” rightfully suggests that there are options open to many that may help improve cognitive function. For example, Dr. Leigh Charvet and colleagues at New York University Langone Medical Center and the State University of New York at Stony Brook tested a computer-based cognitive training program in 135 people with MS. Of this group, 71 people used the training program – a series of brain-training games that are continuously adapted to keep the individual challenged – and 64 played regular video games for one hour per day, five days per week, over 12 weeks. Although the “placebo” video game group logged more playing time, those in the training group showed significantly greater improvement in cognitive function, as shown by a number of neuropsychological tests. I hope further testing makes this and similar programs easily accessible for improving cognition in MS...

Me and my "happy pill"

Blog Summary

Oh, I remember. In my 20's, losing sight in my right eye, tingling in my hands. In my early 30's, unable to taste food, numbness on my right side. Then at 38, vertigo, numbness from my head to my foot only on my right side, slurred speech. Finally a diagnosis: multiple sclerosis. I couldn't get a disease that was easier to spell?! I saw one of the best neurologists in NYC who told me that what I had experienced in the past and what I was experiencing now were symptoms of MS. Were there any treatments? Yes.  Was I going to inject myself? "No way." ...

MS, Relationships and Intimacy: An interview with Dr. Peggy Crawford (Part 1)

Blog Summary

We recently sat down with Dr. Peggy Crawford to discuss relationships and intimacy. As a health psychologist, Dr. Crawford has worked with individuals and families with multiple sclerosis for the past 25 years. She was a member of the staff at the Mellen Center for Research and Treatment of MS at the Cleveland Clinic and then a faculty member in the Department of Neurology at the University of Cincinnati. Over the years, Dr. Crawford has been actively involved with the National MS Society as a presenter, consultant and committee member and with CAN DO MS as a member of the program staff. In your experience working with people with MS, what do you see as the greatest challenges that couples face when it comes to MS and intimacy?...

The Wahls Protocol: An Interview with Dr. Terry Wahls

Blog Summary

We recently sat down with Dr. Terry Wahls to discuss diet and MS. Dr. Wahls is a clinical professor of medicine at the University of Iowa and a staff physician at the Iowa City Veterans Affairs Hospital, where she teaches medical students and resident physicians, sees patients in traumatic brain injury and therapeutic lifestyle clinics with complex chronic health problems that often include multiple autoimmune disorders, and conducts clinical trials. She also lives with secondary progressive multiple sclerosis, and has personally found great benefit in treating her MS through a specific program she calls the Wahls Protocol™...

Anyone Got the Holiday Blues?

Blog Summary

So, the holidays are approaching fast. There are presents to buy, friends and relatives to see, get-togethers to plan or attend, and meals to prepare or share. No wonder many of us greet this season with a mixture of excitement and panic – it’s easy to feel overwhelmed. And for anyone living with the overpowering fatigue of MS, just the thought of all this activity can be exhausting. For some people the pressure to feel jolly, festive, social and grateful can have the opposite effect – leading to a whopping case of the holiday blues. We’ve all had them at one time or another, but MS can sometimes bring on those blues with a vengeance, particularly when MS symptoms make everything a little less fun and a little more challenging.

Soul Sister: Something’s Missing

Blog Summary

“Hi Karen. This is Carol. Dr. G said I should talk with you about my MS.”   I was surprised by the call.  When the nurse asked me if I would speak with Carol, I willingly gave her my phone number – two years ago!  Two years later, Carol was ready to talk. I thought that she might ask about topics like how to handle fatigue, best ways to prepare for travel, how to manage symptoms, challenges of medications, injections, and physical therapy...