Short Communication - Journal of Neurology and Neurorehabilitation Research (2024) Volume 9, Issue 2

Living with Neuromuscular Diseases: Patient Perspectives and Coping Strategies

Hamish Carey ^*

Department of Physiotherapy, University of Málaga, Spain

*Corresponding Author:

Hamish Carey
Department of Physiotherapy, University of Málaga, Spain
E-mail: carey@ug.es.com

Received: 23-Feb-2024, Manuscript No. JNNR-24-137729; Editor assigned: 24-Feb-2024, PreQC No. JNNR-24-137729(PQ); Reviewed: 9-Mar-2024, QC No. JNNR-24-137729; Revised: 14-Mar-2024, Manuscript No. JNNR-24-137729(R); Published: 21-Mar-2024, DOI: 10.35841/aajnnr-8.2.194

Citation: : Carey H. Living with neuromuscular diseases: Patient perspectives and coping strategies. J Neurol Neurorehab Res.2024;9(2):194

Introduction

Living with a neuromuscular disease (NMD) presents unique challenges that affect physical, emotional, and social aspects of life. Neuromuscular diseases, such as muscular dystrophy, amyotrophic lateral sclerosis (ALS), and spinal muscular atrophy (SMA), involve the progressive weakening and degeneration of muscles and nerves, leading to varying degrees of disability. Despite these challenges, individuals with NMDs develop resilient coping strategies and find ways to maintain their quality of life. This comprehensive guide explores patient perspectives on living with NMDs and highlights effective coping strategies [1].

Physical Challenges: The most immediate and noticeable impact of NMDs is the physical deterioration that accompanies these conditions. Patients often describe the frustration and helplessness that come with losing the ability to perform everyday tasks. Mobility Issues: Many patients experience progressive difficulty with walking, standing, and moving. For instance, those with Duchenne muscular dystrophy (DMD) often rely on wheelchairs as the disease progresses [2].

Fatigue and Pain: Chronic fatigue and muscle pain are common symptoms, affecting daily activities and overall well-being. The constant struggle with physical limitations can be exhausting and debilitating. Emotional and Psychological Impact: The emotional burden of living with an NMD is substantial. Patients frequently report feelings of sadness, anxiety, and depression. Coping with Diagnosis: Receiving a diagnosis of an NMD can be a traumatic experience. The knowledge that the disease is progressive and incurable can lead to a profound sense of loss and despair [3].

Mental Health Struggles: Chronic illness often brings about mental health challenges. Depression and anxiety are prevalent among NMD patients due to the ongoing stress of managing their condition and the uncertainty about the future. Social and Interpersonal Relationships: Neuromuscular diseases affect not only the individuals diagnosed but also their families and social circles [4].

Changes in Social Roles: Patients may find themselves needing to depend more on family members and friends, which can alter dynamics and strain relationships. This shift can be particularly challenging for those who were previously independent. Isolation and Stigma: The physical limitations imposed by NMDs can lead to social isolation. Additionally, societal stigma and misunderstandings about the disease can result in patients feeling marginalized [5].

Employment and Financial Challenges: NMDs often impact a person's ability to work, leading to financial stress. Job Limitations: Many patients find it challenging to maintain employment due to physical limitations or frequent medical appointments. This can lead to a loss of income and career aspirations [6].

Patient Education: Understanding the disease, its progression, and management options empowers patients to take an active role in their care. This knowledge helps in making informed decisions and advocating for oneself [7].

Nutrition and Diet: A balanced diet tailored to individual needs can help manage symptoms and maintain overall health. Nutritional counseling can address specific dietary needs related to the disease. Exercise and Activity: Engaging in appropriate levels of physical activity, as recommended by healthcare providers, can help maintain muscle function and overall health. Adaptive exercise programs can be tailored to individual abilities and limitations [8].

Community Resources: Accessing community resources, such as disability services, vocational rehabilitation, and social services, can help manage the practical aspects of living with an NMD. Planning and Adaptation: Proactive planning and adaptation are key to managing the progressive nature of NMDs [9].

Future Planning: Planning for the future, including financial planning and discussing long-term care options, can alleviate some of the anxiety associated with the progression of the disease. Adaptation Strategies: Being flexible and willing to adapt to changing abilities is crucial. This may involve learning new ways to perform tasks or finding new hobbies and interests that accommodate physical limitations [10].

Conclusion

Living with a neuromuscular disease presents significant challenges, but with the right strategies and support, individuals can lead fulfilling lives. Understanding the patient perspectives on the physical, emotional, and social impacts of NMDs is essential for providing comprehensive care. Coping strategies, including medical interventions, assistive technologies, psychological support, education, healthy lifestyle choices, and strong support networks, play a vital role in managing these conditions. By continuing to develop and share effective coping mechanisms, we can improve the quality of life for individuals with neuromuscular diseases and help them navigate the complexities of their conditions with resilience and hope.

References

1. Stino AM, Naddaf E, Dyck PJ, et al. Chronic inflammatory demyelinating polyradiculoneuropathy—Diagnostic pitfalls and treatment approach. Muscle Nerve. 2021;63(2):157-69.

Indexed at , Google Scholar, Cross Ref

2. Ortega-Hombrados L, Molina-Torres G, Galán-Mercant A, et al. Systematic review of therapeutic physical exercise in patients with amyotrophic lateral sclerosis over time. Int J Environ Res Public Health. 2021;18(3):1074.

Indexed at, Google Scholar, Cross Ref

3. Hawke F, Newman J, Miller JA, et al. Interventions for promoting physical activity in people with neuromuscular disease. Cochrane Database Syst Rev. 2021(5).

Indexed at, Google Scholar, Cross Ref

4. Wiendl H, Abicht A, Chan A, et al. Guideline for the management of myasthenic syndromes. Ther Adv Neurol Disord. 2023;16:17562864231213240.

Indexed at, Google Scholar, Cross Ref

5. Filippini G, Minozzi S, Borrelli F, et al. Cannabis and cannabinoids for symptomatic treatment for people with multiple sclerosis. Cochrane Database Syst Rev. 2022(5).

Indexed at, Google Scholar, Cross Ref

6. Howard Jr JF, Bril V, Burns TM, et al. Randomized phase 2 study of FcRn antagonist efgartigimod in generalized myasthenia gravis. Neurology. 2019;92(23):e2661-73.

Indexed at, Google Scholar, Cross Ref

7. Latronico N, Rasulo FA, Eikermann M, et al. Critical illness weakness, polyneuropathy and myopathy: diagnosis, treatment, and long-term outcomes. Crit Care. 2023;27(1):439.

Indexed at, Google Scholar, Cross Ref

8. Limerick G, Christo DK, Tram J, et al. Complex Regional Pain Syndrome: Evidence-Based Advances in Concepts and Treatments. Curr Pain Headache Rep. 2023;27(9):269-98.

Indexed at, Google Scholar, Cross Ref

9. Matsumura T, Saito T, Mori M, et al. Infection control in the respiratory care of coronavirus disease?19 patients with neuromuscular diseases. Neurol Clin Neurosci. 2021;9(2):159-65.

Indexed at, Google Scholar, Cross Ref

10. Vakrakou AG, Karachaliou E, Chroni E, et al. Immunotherapies in MuSK-positive Myasthenia Gravis; an IgG4 antibody-mediated disease. Front Immunol. 2023;14:1212757.

Indexed at, Google Scholar, Cross Ref