Support for Life with Secondary Progressive MS: Social, Financial, and More

0
609

Overview

Secondary progressive MS (SPMS) is a chronic condition that causes new and more severe symptoms to develop over time. With effective treatment and support, it can be managed.

If you’ve been diagnosed with SPMS, it’s important to get treatment from qualified healthcare professionals. It may also help to connect with patient organizations, local support groups, and online communities for peer support.

Here are some of the resources that can help you cope with SPMS.

Social and emotional support

Living with a chronic condition can be stressful. At times, you might experience feelings of grief, anger, anxiety, or isolation.

To help you manage the emotional effects of SPMS, your primary care doctor or neurologist may refer you to a psychologist or other mental health specialist.

You might also find it helpful to connect with other people who live with SPMS. For example:

  • Ask your doctor if they know about any local support groups for people with MS.
  • Check the National Multiple Sclerosis Society’s online database for local support groups or participate in the organization’s online groups and discussion boards.
  • Join the Multiple Sclerosis Association of America’s online support community.
  • Call the National Multiple Sclerosis Society’s peer helpline at 866-673-7436.

You can also find people talking about their experiences with SPMS on Facebook, Twitter, Instagram, and other social media platforms.

Patient information

Learning more about SPMS may help you plan for your future with this condition.

Your healthcare team can help answer questions that you might have about the condition, including your treatment options and long-term outlook.

Several organizations also offer online resources related to SPMS, including:

These sources of information and others may help you learn about your condition and strategies for managing it.

Managing your health

SPMS can cause diverse symptoms that require comprehensive care to manage.

Most people with SPMS attend regular checkups with a neurologist, who helps coordinate their care. Your neurologist may also refer you to other specialists.

For example, your treatment team might include:

  • a urologist, who can treat bladder problems that you might develop
  • rehabilitation specialists, such as a physiatrist, physical therapist, and occupational therapist
  • mental health specialists, such as a psychologist and social worker
  • nurses with experience managing SPMS

These healthcare professionals can work together to address your changing health needs. Their recommended treatment may include medication, rehabilitative exercises, and other strategies to help slow the progression of the disease and manage its effects.

If you have questions or concerns about your condition or treatment plan, let your healthcare team know.

They may adjust your treatment plan or refer you to other sources of support.

Financial assistance and resources

SPMS can be expensive to manage. If you’re finding it hard to cover the costs of care:

  • Contact your health insurance provider to learn which doctors, services, and products are covered under your plan. There might be changes that you could make to your insurance or treatment plan to lower costs.
  • Meet with a financial counselor or social worker that has experience helping people with MS. They may help you learn about insurance programs, medicine assistance programs, or other financial support programs for which you might be eligible.
  • Let your doctor know that you’re concerned about the costs of treatment. They may refer you to financial support services or adjust your treatment plan.
  • Contact the manufacturers of any medications that you take to learn if they offer assistance in the form of discounts, subsidies, or rebates.

You can find more tips for managing the costs of care in the Financial Resources and Financial Assistance sections of the National Multiple Sclerosis Society’s website.

Takeaway

If you’re finding it difficult to manage the challenges of SPMS, let your doctors know. They may recommend changes to your treatment plan or put you in touch with other sources of support.

Several organizations offer information and online support services for people with MS, including SPMS. These resources may help you develop the knowledge, confidence, and sense of support that you need to lead your best life with SPMS.

Last medically reviewed on September 23, 2019

LEAVE A REPLY

Please enter your comment!
Please enter your name here