12 Ways Of Improving Quality of Life for Persons with Multiple Sclerosis

Persons with Multiple Sclerosis (MS) have poorer quality of life due to a variety of issues. Dr. Shital Raval, with inputs from Sheela Chitnis, Founder MSSI, shares twelve ways to improve quality of life by avoiding triggers and managing symptoms effectively. 

A study once found that patients with Multiple Sclerosis (MS) had poorer quality of life (QoL) than other persons with disability and that was due to issues such as fatigue, unemployment, and mobility limitations. Zwibel et al published in 2011, that “MS can diminish quality of life (QOL) by interfering with the ability to work, pursue leisure activities, and carry on usual life roles. Symptoms that affect QOL may include impaired mobility, fatigue, depression, pain, spasticity, cognitive impairment, sexual dysfunction, bowel and bladder dysfunction, vision and hearing problems, seizures, and swallowing and breathing difficulties.”

Although medical treatment does help reduce symptoms and delay progression of the disease, it may not necessary cause significant improvement in the quality of life for a patient. Assessment of the QoL of every patient must be a necessary requisite. Formal assessment scales include the Multiple Sclerosis Quality of Life-54 (MSQOL-54), the Multiple Sclerosis Quality of Life Inventory, the Beck Depression Inventory, and the Multiple Sclerosis Modified Fatigue Impact Scale. Addressing QoL issues not only brings about improvement in the patient’s daily life but also impacts compliance to treatment and outcome of the disease.

Here are some ways to help enhance wellness and quality of life by avoiding disease triggers and better managing symptoms for persons with Multiple Sclerosis:

1. Eat right : There is no specific “MS diet” that a patient can follow, however a diet that helps improve energy levels and is low on fat is considered desirable. This helps combat fatigue and stay energised through the day. Due to spasticity, decreased bowel movements are another common symptom in patients. A high fibre diet is an easy remedy to ease such constipation. Some people have reported benefiting from a gluten free, dairy free diet.
2. Kick the butt : If you haven’t already quit smoking, now is the time to do so. Smoking is known to be a risk factor for the disease getting worse as it increases disease progression in MS patients. Patients who smoke find their disease has advanced from relapsing-remitting to secondary –progressive. It is even responsible for brain shrinkage and more brain lesions. Even second-hand smoke is considered harmful for MS.
3. Stop alcohol intake : Alcohol has various consequential effects on patients who have even just one drink. It can right away affect your balance and coordination. Bladder irritation is common and uncomfortable for those who have existing spasticity. Alcohol is counter indicated when used with certain MS medications and hence must be avoided.
4. Get moving : Physiotherapy (PT) is known to be beneficial for MS patients at any stage of their illness. In early stages, it can help strengthen muscles and provide relief from spasms. Continuing PT aids in functional mobility, flexibility and avoidance of involuntary muscle contractions. Make sure you find a Physiotherapist specialised in MS who can help chart out an exercise routine for you. Physical activity in any form can be helpful including daily activities like cooking, brushing the dog, household chores, gardening etc. Recent studies show great improvement in patients who tried yoga and aquatherapy (exercising in the water).
5. Work the brain : It is equally important to keep the brain cells active. Cracking into the daily crossword or trying you hand at the sudoko or word puzzles in the newspaper can be a great way to get the gray cells working.
6. Confront your depression and anxieties : There is an increasing incidence of depression in patients with MS. This is not uncommon as with all chronic conditions. Fatigue and restricted movement is often an underlying cause for being on house arrest and developing low self-esteem and lack of confidence. Counselling can be tremendously valuable in coping with such mental health issues. Both patients and caregivers can profit from it.
7. Get your financials in order : Find resources and information on available financial support such as insurance, government schemes, medical aids from NGOs and Trusts. Apply for the Disability Certificate which can provide additional benefits. Check with your medical insurance as to what services and claims you are eligible for. Certain Pharmaceutical companies also have patient assistance programs for drug concessions. Plan for the future and be money smart.
8. Be independent : Unemployment is a common problem for MS patients as the disease often affects young people who may be at the start or height of their career. Symptoms can affect productivity at work and loss of income. It becomes even more imperative to then find suitable work places that provide flexibility and understanding towards your medical condition. Employment creates both financial and personal independence for the patient. Many organisations and NGOs provide economic rehabilitation programs, vocational training and work place assistance.
9. Join a support group : A support network can be beneficial for both patients and their family members or care providers. Talking to peers about one’s struggles, sharing useful tips and resources, providing emotional support etc. are just some of the advantages of joining a local or online community.
10. Get your Vitamin D : Studies show that Vitamin D deficiency is associated with MS, so make sure to correct any deficiency. Clinical trials are ongoing to determine if talking Vitamin supplements can have any effect on reducing disease activity for MS.
11. Avoid extreme temperatures : For most MS patients, raise in the external or internal body temperature is very bothersome and leads to worsening of symptoms. This occurs because nerves that are demyelinated are unable to conduct electrical impulses under hot conditions. In fact, in the olden days, MS was diagnosed by making the patient sit in a hot bath tub and watching for worsening of neurological symptoms. This is called the Uhthoff’s test when a patient experienced blurred vision due to overheating. This is a temporary condition and improves when the patient is exposed to cool conditions. Hence patients must avoid prolonged sun exposure, saunas, hot tubs, exercising in the heat, and even fever. In contrast, some patients when exposed to extreme cold conditions experience a worsening effect on their spasticity.
12. Sleep well : Sleep can be disturbed in many ways for MS patients and can make symptoms feel worse. The causes of sleep disturbances can be due to MS medications (corticosteroids and disease-modifying drugs), daytime napping due to fatigue, emotional stress or depression, and problems such as urinary or bowel irregularities, restless legs, musculoskeletal pain or temperature dysregulation. Talk to your doctor about managing your underlying symptoms that may be causing the sleeplessness. Work on generating a fixed night time routine to aid with a good night’s sleep of a minimum of 7-8 hours.

References:

1. Sheela Chitnis. Founder of the Multiple Sclerosis Society of India - Mumbai Chapter. Doi: www.mssocietyindia.org
2. Zweibel, H.L. and Smrtka J. (2011). Improving quality of life in Multiple Sclerosis: An unmet need. The American Journal of managed care. S139-S145. Doi: https://www.ajmc.com/journals/supplement/2011/a344_may11/improving-quality-of-life-in-multiple-sclerosis-an-unmet-need
3. Devy, R. et al. Improving the quality of life in multiple sclerosis patients through coping strategies in routine medical practice. Neurol Sci (2015) 36: 85. https://doi.org/10.1007/s10072-014-1900-8
4. Zivadinov R, Weinstock-Guttman B, Hashmi K, et al. Smoking is associated with increased lesion volumes and brain atrophy in multiple sclerosis. Neurology. 2009;73(7):504–510. doi:10.1212/WNL.0b013e3181b2a706