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Cognitive Challenges of Multiple Sclerosis
By Jack Burks, M.D.
In this article, I briefly explore insights that I have gained about the
cognitive challenges
associated with MS from treating people with MS for more than 40 years. My observations are more practical than scientific. I will start with my historical perspective, then relay a patient’s story with important practical strategies to maximize cognitive abilities. You may find that you are facing similar issues and gain insights to help you adapt to your cognitive challenges.
Historical Perspective
Unfortunately, cognition problems were not often linked to MS until recently and people suffered without understanding or support. In fact, 40 years ago most
neurologists
believed that MS affected only the myelin (insulation) around axons (electrical transmission wires) and not the neurons (gray matter or “thinking” cells). Therefore, we told patients their thinking and memory would not likely be affected by their MS. As for me, within a few months of evaluating MS patients in the 1970s, I realized cognitive issues could be a serious consequence of MS. Unfortunately, government or other funding agencies were not ready to fund cognitive research. Some said, “Dr. Burks, if you are correct, your research would be devastating to patients’ mental state, because we have no treatment. It’s better for patients not to know.”
Finally, the Vocational Rehabilitation Department agreed to provide funding because Voc Rehab was having trouble retraining people with MS. The study defined cognitive dysfunction as part of MS for many people -- about 50 percent of MS patients had cognitive problems! This and other research led to the advancement of cognitive therapy to help these people. In addition, MS cognitive problems were found to be much different than dementia in individuals with Alzheimer’s disease.
The good news is that in the last several years, our understanding of cognitive issues and our ability to help patients has increased dramatically. Now we know that MS
disease-modifying therapies
have a positive effect on cognition as well as reducing MS relapses. Currently, evaluating cognitive problems is part of most clinical trials in new MS therapies. Cognitive rehabilitation therapy is available through many MS centers. The future is very promising for overcoming many cognitive challenges.
The Story of Mrs. S
Mrs. S is a 50-year-old buyer of copy machine parts. She had relapsing MS with frequent relapses starting at age 20. After many years, she now has secondary progressive MS, with only occasional relapses since being treated with MS medications. Within a few years after her MS diagnosis, she noticed problems with concentration and memory. She was reassured that this was not her MS, but likely from her
fatigue
, stress, and
depression
. Treatments with antidepressant medications were of little help and she feared losing her job.
Fortunately, she saw an MS specialist
team
including a
speech pathologist
, an
occupational therapist
, a
psychologist
, and a cognitive rehabilitation expert, who worked together with her employer to
restructure her business environment
. She was moved from a large room full of cubicles to a corner office (with a door) so she could work uninterrupted. She stopped smoking,
modified her high fat/processed food diet
, began dance and
yoga
classes, started
exercising
with
hydro-therapy
(swimming), developed an organized daily regimen to stay focused on one project at a time, and started playing “brain games” on her computer. Also, she learned that MS does not preclude having other medical problems. She was diagnosed with low thyroid and prescribed thyroid medication, which made her feel much better.
Mrs. S is still challenged by cognitive problems and is not as efficient as she once was, but her job is secure and her friends and family noticed improvement in her abilities. She makes a
computer to-do list
daily and makes certain to get
eight hours of sleep
. Yes, she still has awkward moments and is more easily distracted, but she knows how to adapt to these challenges. She reads the newspaper daily, does crossword puzzles, and participates in an MS support group. Last, but not least, she got married, and her quality of life is much better.
How does this story illustrate cognitive challenges and potential solutions? Hopefully, her strategies may help you.
After her diagnosis of “depression only” she persisted and found knowledgeable and supportive healthcare professionals who recognized her cognitive problems and helped her meet many of her cognitive challenges.
She developed healthy lifestyle changes including stopping smoking,
exercising regularly
, attending counseling, and improving her nutritional balance.
With cognitive rehabilitation, she confronted her work issues and made changes in her work environment and her organization skills to keep her job, which put less stress on her personal life.
She joined a
MS support group
to receive more encouragement and reassurance. She learned that helping others helped her as well.
She has improved her adherence to her MS medications to reduce her
MS relapses
and cognitive damage.
Her improved cognitive abilities have also improved her adaptive skills, her organizational skills, and her communication skills.
She feels her work, her relationships, and her quality of life are very satisfying.
She was treated for a non-MS related issue (low thyroid) and feels even better. Another lesson she learned: “You can have fleas and ticks at the same time.” Therefore, stay alert to non-MS related health problems.
My Take Home Message
My goal has been to provide you with insight and specific ideas to help you deal with cognitive issues in your life. It is important to recognize cognition issues and to seek help from professionals. Positive strategies can help both vocationally and socially. Changing habits and attitudes contribute to a higher productivity and quality of life. Stop smoking, start exercising (mind and body), practice good nutrition and sleep habits, prioritize and organize each day with a to-do list, tackle one problem at a time (which can lessen distractions), stay on your MS medication, recognize that everyone has “good and bad days” (try to not get discouraged), keep connected to your family, cultivate a good social network of friends and supporters, and (last, but not least) develop a close/open/trusting relationship with your healthcare professionals.
Keep remembering that happiness is a state of mind and not a state of health. As we all know, some physically healthy people seem miserable and we see many people with MS who feel good most of the time and are happy. They focus on the positives and the blessings that they receive on a regular basis. Included in these blessings are the many MS professionals and patient advocates who work tirelessly to better our understanding of MS and discover new MS therapies.
Dr. Jack Burks is professor and director of the MS Program at Nova Southeastern University, Davie, Fla.
Dr. Burks would like to thank and acknowledge the assistance from Judy Daniels, who has MS, and expresses his appreciation for her “patient’s touch” to balance the “doctor’s perspective” when giving advice to people with MS.