It was late Friday afternoon at the annual meeting for the Consortium for MS Centers and after three days of intense science and medical discussions, many of which involved words I can barely spell let alone understand, my brain was ready for a break. I scanned the program schedule again and came down to two final options for a happy hour presentation – after all it was after 4:00 PM on Friday.
The titles A Collaborative Approach to Dealing with Difficult Patients and Health and Wellness, Care of the Body, Mind and Spirit gave me a pretty clear idea of which might be less mentally challenging to sit through. A professional friend who also happens to have multiple sclerosis attended an earlier presentation of the Difficult Patients and told me of a few comments that didn’t sit right with her – in other words, she was a bit ticked off thinking our healthcare providers were labeling many of us as difficult. It might have been more alluring to me if the title noted us as complex patients rather than difficult.
Already suspicious of the title and from the friend’s comments, it didn’t sound like a very happy hour choice to me, so I went the other direction and chose wellness. Secretly I was hoping there might be a few relaxation exercises involved and I could really unwind at the end of another long and fulfilling day.
Wellness and Caring for the Body
The presenters packed a lot into their brief time. Robin Tillett, RN, MSCN, led off with an over view of wellness with the definition of health from the World Health Organization – “Since 1948 the WHO has defined ‘health’ as “a state of complete physical and social well-being and not merely the absence of disease or infirmity.” She adds “Wellness is considered to be an active process of becoming aware of and learning to make choices that lead toward a longer and more successful existence.”
This all sounds great, but how is this accomplished by someone who lives with a chronic disease like Multiple Sclerosis? She clearly stated health care providers need to stop reacting to every problem and instead identify the many obstacles to wellness people living with MS might face that create those problems.
Top of her list are the essentials we might be lacking in an effort for wellness:
- readily available transportation
- the additional financial needs for living with a chronic disease, and
- the lack of time.
Ms. Tillett said many people with MS use their neurologist as their primary care provider, and as such the specialists should proactively guide their patients in ways to use health and wellness strategies to improve their overall quality of life. These might include nutrition discussions, exercise advice, and mental health assistance. Exercise for people with MS was discouraged until the 1990s, but now studies show the value of exercise for physical and mental well being, and should be encouraged.
She pointed out that many of us become so focused on our MS that we overlook our other health needs, and might neglect other standard care such as ‘annual physical exams, vaccinations, pap smears and mammograms, colonoscopies, bone density and PSA” screenings. Ms. Tillet said health care providers need to work with patients about their health and wellness needs, but ultimately they need to “empower patients to be in charge of disease management as well as wellness strategies.”
Caring for the Mind
The next speaker, Lee Hayward, BCN, RN, MSCN, addressed Caring for the Mind, focusing on Mental Health and Cognitive Fitness. Much of what she had to say we already know, but it is worth repeating as a reminder that what we experience is pretty normal in the context of multiple sclerosis.
People with MS have a higher rate of mental or behavioral disorders than the general population. She said these problems are often overlooked by professionals because they might assume living with a chronic disease will likely create problems with our emotional and mental state. Ms. Hayward said the factors causing problems might include “the need to adjust to progressive physical disability, the need to accept from help from others, profound fatigue, clinical depression and cognitive dysfunction.”
Ms. Hayward added that in addition to this being a result of living with a chronic disease, the medicines we take can also contribute to or even hide mental health needs. The list of medications she discussed includes:
- Anti-anxiety drugs
- Pain medications
- Muscle relaxants
Treatment options for mental health should always include a thorough evaluation of the person’s disease state and the medications they are currently using. From this evaluation, there can be recommendations for psychotherapy, stress management programs, support groups or other interventions.
Cognitive changes can affect how we think and our memory, and it is estimated 40-70% of people with MS have some degree of cognitive change. Ms. Hayward said these changes might show themselves in these forms:
- Reduced speed of processing information
- Reduced attention span/concentration
- Impaired language processing
- Impaired memory
- Impaired reasoning/problem solving
Just like with mental health, Ms. Hayward said a treatment plan should be developed based on an evaluation by a neuropsychologist with specialized training in MS. The treatments might include teaching skills to compensate for the problems, such as memory training and organizational skills with the use of lists and notebooks. Counseling might also be recommended to help us deal with the fear and frustration of living with cognitive problems.
Ms. Hayward closed her part by saying the team approach to mental health and cognitive fitness is essential and at the heart of that is communication with physicians, nurses, social workers and therapists, but most importantly the person with MS and their family.
Mary Kay Fink, ACNS-BC, MSCN, spoke on Spiritual Wellness, which she pointed out is not necessarily based in religious beliefs. Spiritual wellness “is a personal matter involving values and beliefs that provide a purpose in our lives… it is generally considered to be the search for meaning and purpose in human existence, leading one to strive for a state of harmony with oneself and others while working to balance inner needs with the rest of the world.”
Ms. Fink added spiritual wellness ‘Can help people cope and get through hard times. Spiritual wellness gives value to life. “The person with MS may not be able to cure their illness, but the spiritual connection can be used to help them feel better, cope with pain, symptoms, limits and daily challenges. Additionally it will help them to continue to find meaning and purpose in life and live life more fully. When things get really rough it gives one the strength to carry on.”
MS is the uninvited guest, said Ms. Fink, and has a ripple effect in all phases of a person’s life. It affects not only the person with MS but their family, which may include a partner, spouse or children. She is especially concerned about children of people with MS who might be unwittingly turned into caretakers for their parent, rather than being able to live a carefree childhood. She also realistically noted sometimes this can’t be avoided and the help of children may be essential.
“Persons with MS tend to withdraw and become socially isolated. They often have a shrinking circle of friends due to reasons such as poor mobility, fatigue and depression,” said Ms. Fink, adding the lack of financial resources can also create this isolation.
She touched briefly on the use of recreation as a form of connecting with spiritual wellness. She said while exercise is good and essential, there is also the need for recreational activities especially because it usually includes some form of socialization. She recommends formal recreational therapy, which is a growing specialty, and I found further information on the specialty through Mayo Clinic’s website:
“Recreational therapists provide treatments and recreation activities to individuals with illnesses or disabling conditions to improve or maintain physical, mental and emotional well-being and help reduce depression, stress and anxiety.
Recreational therapies help patients recover basic motor functioning and reasoning abilities, build confidence, and socialize more effectively. Treatments may incorporate arts and crafts, animals, sports, games, dance and movement, drama, music, and community outings.”
Ms. Fink concluded her presentation by sharing interventions that may contribute to Spiritual Wellness, including “meditation, prayer, affirmations or specific spiritual practices that support ones connection to a higher power or belief system. Yoga and meditation can also help develop spiritual wellness.”
My Mind, Body and Spirit
A powerful conclusion to this panel presentation came from Jill Griggs, RN, who also has multiple sclerosis. She took us through her struggle to get a diagnosis and also shared private details of the medical challenges several members of her close family also face, which adds additional demands and stress on her. Beyond sharing the details of her diagnosis and its impact on her work and family, she let us in one her wellness approach.
Ms Griggs said she has ‘great medical care, but I needed something more – I needed to find a sense of control, I felt a disconnect from within, and I needed a crystal ball of my future.’ Ms. Griggs explained her holistic approach toward life with MS, and a need to ‘integrate body, mind and spiritual wellbeing for my ultimate overall wellness.”
As simple as it might sound, Ms. Griggs explained that she chooses happiness – and does it by
- Focusing on the positives in my life
- Motivation to take better care of myself (eating, exercise, medication, sleep, etc)
- Learning to laugh at myself
- Taking risks and expanding my comfort zone
Ms Griggs says her ultimate goal is sharing happiness – “We have all heard the saying, ‘love in your heart isn’t love until you give it away’ and I completely agree. I also believe that true happiness in your heart is found when you share it with everyone you come in contact with. Happiness motivates the body, calms the mind, and excites the spirit,” Ms. Griggs said.
She concluded with these thoughts:
The body heals with play.
The mind heals with laughter.
The spirit heals with joy.
Her message of creating happiness was the perfect way to end my Friday. I’m going to try her approach and work more on the happiness, not just on Friday afternoons but every day.
Wishing you well,