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.”...
It’s that funny time of year in New England, when the weather can’t make up its mind. One day will be cool and cloudy, the next scorching hot and sunny. And some days present perplexing combinations of conditions. The other day, for instance, I took a bike ride with a girlfriend. Neither of us quite knew how to dress, as the day was overcast but also quite muggy and buggy. Ugh.
For those of us with multiple sclerosis, that kind of situation can pose more than the average amount of discomfort. Many of us find our MS symptoms are aggravated by the heat, and simple decisions such as what to wear on a bike ride can affect us pretty profoundly...
I'm so tired, I haven't slept a wink
I'm so tired, my mind is on the blink….
The Beatles song “I’m So Tired” isn’t about multiple sclerosis. But its lyrics have come to my mind pretty often since I was diagnosed with MS. Outside of an occasional numbness on the right side of my face, fatigue has always been my main MS symptom. And, as anyone who experiences MS-related fatigue knows, it’s not just about feeling tired. It’s about feeling exhausted, beat, and too tired to know what to do next. It’s a defeating and humbling experience...
I am truly amazed at the breadth of research I am seeing at the AAN on restoring function to people with MS. Scientists are looking virtually everywhere for answers about how to manage symptoms and improve function through novel treatments and rehabilitation techniques.
One great aspect of attending the AAN is hearing about exciting advances in neurology in general – Dr. Albert Lo (we talked about his salsa dance program) presented promising research on rehabilitation robotics at a plenary session to thousands of neurologists. Robots can do heavy lifting for tasks like supporting a person’s weight while they walk on a treadmill, and they can be programmed to provide precise resistance and “dosages” of an exercise. A core concept of rehab is the necessity to do repetitive work. And robots are masters of repetition – an occupational therapy session may require 50 repetitions of an exercise, and robots can guide a person’s arm to do those precise repetitions. We need more proper trials, says Dr. Lo, but it was exciting to see this new frontier of rehabilitation research, which is just beginning to be applied to improving function for people with MS...
I am blogging from the 66th Annual Meeting of the American Academy of Neurology in Philadelphia, otherwise known as the AAN meeting. The AAN features thousands of presentations on neurological diseases. I am increasingly impressed with how many of these address wellness and lifestyle in people with MS. Entire sessions are dedicated to topics such as “Diet and Hormonal Influences in MS” and “Cognition and Fatigue in MS.” We are becoming more aware of the diverse paths toward finding solutions for everyone with MS.
And even salsa dancing! Mandelbaum, Lo and colleagues (Providence, RI) reported here on a study in which they enrolled eight people with MS in a four-week salsa dance program. Individuals participated in dance sessions twice a week. Dancing resulted in significant improvements in gait and balance both right after the program and after three months of follow up. The National MS Society is now funding Dr. Lo of this team to conduct a larger study that may lead to more widespread use of dance as physical therapy for MS...
In the multiple sclerosis system, a chronic disease affects two separate yet equally important groups; the brain and the spinal cord. Because of this, often it’s hard to tell the difference between MS and non-MS related events. This is one of those stories. Dun dun.PROLOGUE
When is being tired not just being tired? Often, in the world of MS, it’s hard to exactly know where the tired ends and the MS begins. Am I exhausted from MS fatigue or did I just not get enough rest the night before? Did I not sleep well because of some environmental factor (room too warm, kiddos waking up during the night) or because one of my regular MS-related ailments (pain, spasticity) kept me up? Sometimes, the mystery ailment better resembles Stephen King novel than procedural drama, but the clues remain ambiguous and the conclusion might never be written...
The American Academy of Neurology recently published guidelines for addressing psychiatric disorders in people with multiple sclerosis. That is an important, and most welcome, step.
As the AAN’s paper points out, people with MS are at increased risk of a number of psychiatric illnesses, particularly depression and a disorder called pseudobulbar affect, a phenomenon in which people laugh or cry at inappropriate times without feeling particularly happy or sad...
I’ll admit it: Contrary to my usual positive, inquisitive approach to multiple sclerosis, I cried last December when my MS symptoms flared. I cried long and hard.
I remember returning home from work, my left leg stiff and weak, stride slowed, with nobody home but the dog and a very demanding cat, and it just poured out of me, the kind of sobbing thrust from the gut, deep and low. It kept coming and coming. I let it. I cried because nobody could hear me. I cried because I felt I hadn’t appreciated walking enough when I had the ability. I cried because I felt responsible for all of it.
Parties, holiday or otherwise, take many different forms, such as: children’s parties (think 20 six-year-olds, wild with excitement about opening presents and fueled by sugar, sugar, sugar)an office party on a Friday evening (think 30 adults, happy to be done with the workweek, getting a little loud and maybe tipsy as they discuss interoffice gossip)a family celebration (think about all of the emotional baggage that comes with this particular mix of people, not to mention your role in preparing the meal and other tasks)
Any of these scenarios can be draining for anyone. However, people with MS have specific symptoms related to the disease that can make parties like this particularly demanding — emotionally, mentally and physically.