Mom's Story, A Child Learns About MS

Mom's Story, A Child Learns About MS
Available on Amazon and www.marynickum.com
Showing posts with label cognitive problems. Show all posts
Showing posts with label cognitive problems. Show all posts

Monday, March 6, 2023

New Research Shows Link Between Sleep and Thinking Problems in People with MS

 A recent study showed that sleep problems and thinking (cognitive) problems occurred significantly more frequently in nurses with MS than in nurses who didn’t have MS, and these issues were linked. This means that sleep problems, which are common in MS, may be a factor in the development of cognitive problems. Sleep disorders are treatable (see below). Whether improving sleep can improve cognitive function as well has yet to be determined.

  • Background: Sleep difficulties are more common in people with MS than in the general population. In addition, many people with MS develop problems with cognitive function, including information processing and memory. A team from the University of Michigan investigated whether sleep problems contribute to cognitive problems in people with MS.
  • This Study: Investigators looked at questionnaires completed by 63,866 nurses (524 of with MS) enrolled in the Nurses’ Health Study. This ongoing study uses questionnaires to track chronic conditions and risk factors for chronic conditions in women nurses. Participants had been asked about diagnosed/suspected sleep disorders and daytime sleepiness. They also had been asked whether they had difficulties with memory, or with cognitive tasks such as following instructions or navigating familiar streets.
  • Results: Sleep disorders, sleepiness, and cognitive problems were significantly more common in nurses with MS than in those without MS. Using advanced statistical methods, the group showed that the occurrence of sleep disorders and sleepiness were significantly associated with the development of cognitive impairment.
  • The Meaning: Sleep problems and cognitive problems affect many people with MS. This study shows a possible connection, meaning that sleep disorders or excessive sleepiness may be leading to cognitive problems. Further study can help to determine if this is the case. This is important because sleep disorders are treatable. Research in people who do not have MS is starting to show that treatment for some sleep disorders may improve cognition, so there is hope that this may also be true for people living with MS.
Learn more…
Are you sleep deprived? Learn more
Get 6 strategies to improve your sleep
Watch a webinar - Ask an MS Expert: Sleep and MS
 
Pathways between multiple sclerosis, sleep disorders, and cognitive function: Longitudinal
findings from The Nurses’ Health Study,” by Tiffany J Braley , Monica M Shieu, Afsara B. Zaheed and Galit Levi Dunietz, is published in the MS Journal (published online January 12, 2023),
 

Wednesday, May 26, 2021

Does Having MS Mean You Identify As Disabled?

 

 By Tamara K Sellman

In early April, I attended a virtual writers’ conference, immediately drawn to a group of workshops that prioritized the voices, ideas, and practices of writers with some sort of disability.

For instance, I attended a poetry panel discussing disfluent writers. The panelists focused on the challenges of writers with speech disabilities (dystonia, stuttering, dysarthria) caused by any number of conditions (cerebral palsy, deafness, neurological disorders).

Does having MS mean you're disabled?

Overall, these were wonderful workshops, perhaps the best of the entire conference. But in each case, a question was posed that left me wondering: As a person with MS, do I identify as disabled? The short answer? No.

This left me feeling a little out of place in the workshops, like a voyeur instead of a student. Which is weird. I left behind a healthcare career I loved because of MS. The circadian disruption of overnight shiftwork put me on a collision course with relapse that just wasn’t worth the risk.

Yet, I don’t feel like I qualify as disabled. To me, disabled means certain limitations prevent me from performing (forgive the healthcare jargon) “activities of daily living.”

Assessing my disability

After all, I can:

walk (even if sometimes it’s a crooked path)

talk (even if my words aren’t always forthcoming or I trip over them with a strange and unexpected slur)

maintain basic hygiene (even if I might need a nap after)

feed myself (even if annoyingly powerful stretches of hiccups make it hard to eat)

cook (even if I occasionally forget the pan on the stove until it’s too late and I have to start over)

read (even if weird MS fatigue blurs my 20/20 vision or wires cross, making comprehension temporarily impossible)

do basic math (even if cognitive fog obscures my focus and I need my smartphone’s calculator for the simplest computations)

Does that make me disabled? I guess it depends upon who you ask.

What does disabled mean?

The ordinary healthy person may consider a person disabled if they’re impaired in some obvious way. To them, a person in a wheelchair is disabled, but a person with cognitive fog isn’t. (Allow me to acknowledge the very active people in wheelchairs I know who cringe at the term disabled).

However, the ADA National Network defines disabled in strokes both broad and context-specific. You’re regarded as disabled if you’re:

impaired but it doesn’t substantially limit your activities

impaired and it does substantially limit your activities only as a result of the attitudes of others toward you

not impaired, but treated like you are

Meanwhile, your neurologist may use the Expanded Disability Status Scale (EDSS) to gauge your disability status. My EDSS score is 3.0 (or mild to moderate disability). I still don’t identify as disabled.

What does disability mean?

Aside from the negative social connotations attached to it, the term disability is a practical measure, less medical and more legal.3 In its formal application, disability implies an objectively measurable status of ability. It’s used to identify financial needs and justify financial support for those whose impairments prevent them from earning a living or paying for healthcare services or living expenses.

By this definition, I’m definitely not disabled. While I left a job voluntarily because of MS, I pivoted to a sustainable working arrangement and I’m not the household breadwinner.

Disability as a legal status is rather complex. The ADA’s definition of disability differs from the definition needed to apply for Social Security Disability benefits in ways that only a good lawyer can parse out. (The National MS Society can help you decide if you need to hire an attorney or advocate if need be).

I wonder if this is why I don’t identify as disabled. I don’t draw disability benefits, nor do I qualify for them in either scenario.

Disabled, disability - do these words even matter?

On a more existential level, I feel like I’m not disabled even if the ADA and EDSS say I am. I still conduct my days mostly unimpeded by occasional MS-related setbacks. I understand and recognize this privilege. And the last thing I want to do is co-opt the reality, resources, or support for those more clearly impacted by MS.

Yet the unpredictability of MS is not lost on me. Odds are, half of us with relapsing-remitting MS will develop secondary progressive disease within 10 years. Ninety percent of us will transition to SPMS within 25 years. With that transition comes a progressive accumulation of “legal” and “medical” disability. I'm in year 8, post-diagnosis. Might my 3.0 EDSS score suddenly jump to 6.0? Who knows? If that happens, and I can no longer work or afford my living expenses or healthcare bills, then these words, accurate or not, will matter, indeed.

 


Monday, July 13, 2015

Study reveals brain network responsible for cognitive changes in multiple sclerosis

An estimated 2.3 million individuals are living with multiple sclerosis (MS) worldwide. Approximately half of all individuals with MS experience changes in cognition such as impaired concentration, attention, memory, and judgment. The underlying brain basis for these deleterious effects has been largely elusive. New findings published yesterday in Neuropsychology reveal that decreased connectivity between network-specific brain regions are to blame for the central deficit common to the various cognitive changes associated with MS, slowed cognitive speed.
In the first study of its kind, researchers at the Center for BrainHealth at The University of Texas at Dallas and The University of Texas Southwestern Medical Center found that, compared to healthy controls, individuals with MS exhibit weaker brain connections between the dorsolateral prefrontal cortex and posterior brain regions. The change amounts to a breakdown in communication between the part of the brain responsible for executing goal-directed thought and action and the regions responsible for carrying out tasks related to cognitive speed such as visual processing, motor execution, and object recognition. The researchers believe that the diminished connections are likely the result of decreased white matter surrounding the neurons in the brain.
"Our study is the first to really zero in on the physiology of cognitive speed, the central cognitive deficit in MS," explained Center for BrainHealth principal investigator Bart Rypma, Ph.D., who also holds the Meadows Foundation Chair at UT Dallas. "While white matter is essential to efficient network communication, white matter degradation is symptomatic of MS. This study really highlights how tightly coupled connectivity is to performance and illuminates the larger, emerging picture of white matter's importance in human cognitive performance."
Collaborating with Elliot Frohman, M.D., Ph.D., director of the Multiple Sclerosis Program and Clinical Center at UT Southwestern, the study recruited 29 participants with relapsing-remitting MS and 23 age- and sex- matched healthy controls. Participants underwent functional magnetic resonance imaging (fMRI) while completing a measure of cognitive processing speed. Participants were given 4 seconds to view a nine-item key of number and symbol pairs (for example '+' above the number 3) and one number-symbol pair probe. Participants were asked to indicate with a left or right thumb button press whether or not the probe appeared in the key.
While accuracy was similar for both healthy controls and individuals with MS, response times for individuals with MS were much slower. Analysis of the fMRI data revealed that while completing this measure, MS patients showed weaker functional connections with dorsolateral prefrontal cortex.
"These findings reveal a diffuse pattern of disconnectivity with executive areas of the brain," explained the study's lead author, Nicholas Hubbard, a doctoral candidate at the Center for BrainHealth working with Dr. Rypma. "Importantly, these decreases in connectivity predicted MS-related cognitive slowing both in and out of the fMRI environment suggesting that these results were not specific to our task, but rather were able to generalize to other situations where cognitive speed is required."
This research supports the need for therapies that target white matter structures and white matter proliferation. Rypma and Hubbard are currently conducting research to further explore the physiology of white matter to better understand cognitive speed reductions not only in MS, but also in healthy aging individuals.