Progression Planning: Managing the Common Challenges of Progressive MS
Living with MS can be daunting, especially when you are worrying about or dealing with disease progression. Progression can seem less overwhelming when you have a plan. Developing problem solving strategies and solutions to manage common physical, cognitive, and medical challenges that happen with disease progression can help dispel worries.
Most MS is still a relapsing form, characterized by relapses caused by inflammation in the central nervous system. Time and/or steroids may improve symptoms, but sometimes residual disability remains, especially as time goes on living with MS. Secondary progressive MS occurs when a person has gradual worsening of neurological symptoms. It can happen with or without relapses, and with or without MRI changes. Primary progressive MS results in worsening of disability from the onset of disease. Both types of MS can be active or not active, and progressive or without progression. You can read more about the new classifications here:
As mentioned above, progression may show up as gradual worsening of symptoms. One of the most frustrating symptoms is cognitive change, because it is invisible and can be hard to prove. The National MS Society endorses annual cognitive screening. If challenges are identified, referrals to other members of the healthcare team, including mental health professionals, speech language pathologists, or occupational therapists, may prove helpful for creating management strategies. You can read more about the assessment and management of cognitive problems in these resourceful articles:
Depression and/or anxiety are very common symptoms of MS – both as the result of the disease itself or as an understandable reaction to the many challenges the disease poses. Regular screening is essential because effective treatment is available. Free, confidential screening can be accessed via Mental Health America:
Treatment for depression, anxiety, and stress may include medication or talk therapy by skilled mental health professionals. Learn some other tools to manage stress here:
Progression of physical symptoms are associated with a new set of challenges. Symptoms such as weakness, balance, fatigue, or walking endurance may have been more manageable in the past, but now are having a greater impact on day to day activities. A consultation with a physical therapist who understands MS may prove valuable when you are experiencing physical progression. A physical therapist can help you establish an exercise routine appropriate for your abilities as well as identify the types of adaptive equipment or mobility aids – walker, scooter, or home adaptations, among others – that can help keep you doing what you want to do as independently and as safely as possible. The National MS Society provides information about addressing the challenges of progression as your needs may become more advanced:
A healthy lifestyle, preventive healthcare, and management of other medical conditions can promote a sense of wellness when dealing with progressive MS, and may even improve symptoms such as fatigue. The importance of a primary care provider is discussed here:
The primary care provider can help you manage other health conditions (co-morbidities) that can worsen your MS. Having just one vascular comorbidity significantly increases your risk of developing MS-related motor disability, so it is important to keep up with your medical care and age-appropriate screening. Great resources for healthy nutrition can be found here:
Remember, whatever challenges you are presented with as your disease progresses, patient advocacy organizations, your health care team, and your expert peers also living with the disease, are available to help you!