Stopping the effects of even one MS symptom can be a life-changing breakthrough for an individual with MS. I’m encouraged by the many strategies I heard about at ECTRIMS and its companion meeting, Rehabilitation in MS (RIMS), and am hopeful that they can soon be put into action to change the lives of people with MS.
Fatigue – Dr. Vincent de Groot (Vu University Medical Center, Amsterdam) reported results from three clinical trials, each testing a different strategy to see if it could lessen fatigue over 16 weeks in approximately 90 people with MS: aerobic training, cognitive behavioral therapy, and energy conservation management. Only cognitive behavioral therapy effectively reduced severe fatigue in this short-term study. We know that psychological interventions are a part of managing fatigue, and these results certainly support that...
About nine years ago, I was in a meeting at work and the executive in charge declared: “Five things. I can only remember five things at one time.”
He said it with a smile, but I understood the larger theme that he was communicating – keep the presentations brief and our recommendations/solutions as clear and concise as possible. Five things. His words still echo in my thoughts today but for vastly different reasons than what he had originally intended...
Where’s the restroom?
There are so many symptoms with MS that a bunch of them often get glanced over. The one that has been the most active for me lately is incontinence. The opposite of constipation, incontinence is where your bladder is going to empty NOW; with as little notice as possible. I never thought that at 31, I would be like my grandmother and know where every bathroom in the county is. It can be super frustrating when out of nowhere, you have to go...
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." ...
Intimacy with a neurological disease can make things interesting, to say the least. At 25 years old I never thought I would have to worry about my ability to have sex with my wife. It's not a symptom of MS many people want to talk about. But I am not scared.
There have been many ups and downs (hehe) along the way. At one point I decided to try the pharmaceutical route — you've seen the commercials. Do they work? Yup! But the side effects that I experienced were uncomfortable. My face was a bright glowing red and I couldn't breathe through my nose. It was awkward to be ready to go while feeling so terrible, and Meg could see my discomfort. It was all around bad. I tried taking a much smaller dose which helped a lot, but not enough...
Fatigue: how many of you can get through the next few paragraphs without nodding off? Probably not this guy. When I start sharing all the wonderful symptoms that MS throws my way, so many people want to skip over fatigue and go right to the numbness. Most folks have a pretty good idea of what the word "fatigue" means and how it feels in general. But for me, using that word to describe the kind of exhaustion I experience doesn’t seem specific or accurate enough. When that tired sets in, I can’t just wait it out. It's not like being worn out from a workout, where you can recover with a few hours of rest.
While I’ve learned that certain things can make the tired come on strong, it can be hard to predict when it’s going to slap me in the face next. A trip to the grocery store, or just a day out with the fam can be pretty good precursors to having a day of the sleeps. Sometimes for no good reason, I will nod off at the dinner table. Once those eyelids get heavy, it’s lights out. There are even days when I think my fatigue might border on narcolepsy...
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?...
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.
I am very tired as I write this blog entry. I would love to take a nap, but I’ve got lots of work to do. This is not unusual for me; why do you think I drink so much coffee?
I have written before about the difference between garden-variety tiredness caused by lack of sleep and the intense fatigue many people with multiple sclerosis suffer. Of course, a person with chronic fatigue can also experience regular tiredness, especially when we’ve been burning the candle at both ends...
It is not often that I feel “lucky” as a person with MS, however, I do feel extremely fortunate to have never had to endure a mood disorder as a symptom of my disease. For a very brief time when I was younger, I suffered with periodic depression as a symptom of premenstrual syndrome, and that was enough to give me the tiniest glimpse into the horror of a mood disorder. When I was diagnosed with MS and learned about the variety of symptoms that I could encounter, my fear of depression and cognitive dysfunction far outweighed my fear of losing mobility.
Since depression is a well-known symptom of MS, I was shocked to learn at the 2014 ACTRIMS-ECTRIMS Meeting that more people with MS have an anxiety disorder than have depression. A study of 7786 adults with MS showed that 54.1% had “excessive symptoms of anxiety,” while 46.9% had “excessive symptoms of depression.”...
We’re always saddened when a favorite celebrity dies. But somehow the death by suicide of actor/comedian Robin Williams has felt like a sucker-punch to the gut. How could someone so seemingly full of life, someone who lit up so many other lives, have arrived at such a dark place that he’d take his own life?
In the aftermath of Williams’ death we’ve been reminded that he long struggled with depression. We’ve been bombarded with messages urging us to be more aware of mental illness in general and depression in particular, and social media have been replete with videos of people telling us how we might help those in our lives who suffer from this insidious disease...