Progressive forms of multiple sclerosis, whether primarily progressive or secondarily progressive after a relapsing phase, present specific challenges in terms of cognition. Continuous disease progression, accumulation of lesions, and brain atrophy can lead to a progressive deterioration of cognitive functions. However, it is possible to act to slow down this decline, maintain capabilities as long as possible, and preserve quality of life.

Understanding Progressive Forms of MS

Multiple sclerosis presents in different evolutionary forms. While the relapsing-remitting form is the most frequent at the beginning, a significant proportion of patients evolve towards a progressive form over time. Understanding the specifics of these forms is essential to adapt cognitive management.

Secondary Progressive MS (SPMS)

Secondary progressive MS occurs in some people who initially have a relapsing-remitting form. After several years of evolution with relapses and remissions, the disease enters a phase where the disability progresses continuously, with or without added relapses. This transition occurs on average 15 to 20 years after the onset of the disease, but with great individual variability.

Primary Progressive MS (PPMS)

Primary progressive MS represents about 10 to 15% of cases. It is characterized by continuous disability progression from the onset, with no distinct relapses. It generally begins later, around 40-50 years, and affects both men and women equally. Cognitive symptoms can be present from the start and progress alongside physical symptoms.

Cognitive Disorders in Progressive Forms

Cognitive disorders are frequent and often more marked in progressive forms of MS than in relapsing forms. The continuous accumulation of lesions and progressive brain atrophy explain this high prevalence. However, there is great individual variability, and some people maintain relatively preserved cognitive abilities despite long progression.

The Most Affected Cognitive Functions

• Processing Speed: Cognitive slowing is often at the forefront and progressively worsens.
• Memory: Working memory and episodic memory can be significantly affected.
• Executive Functions: Planning, organization, and mental flexibility are often impaired.
• Attention: Sustained and divided attention becomes increasingly difficult.
• Verbal Fluency: Finding words can become a daily challenge.

These cognitive disorders often add to major fatigue and physical symptoms that can limit autonomy. The impact on quality of life can be considerable. That's why cognitive management in progressive forms deserves special attention.

My MS became progressive five years ago. I've noticed that my cognitive difficulties were gradually increasing. I've decided not to remain passive. With EDITH and adapted lifestyle, I do everything to slow this progression. My improvements are modest, but I am convinced I would be in a worse state if I had done nothing.

Francoise, 58 years old, SPMS for 5 years

Why Cognitive Stimulation is Even More Important

In progressive forms, where the natural tendency is decline, cognitive stimulation becomes crucial. It cannot reverse the disease progression, but it can contribute to slowing cognitive decline, maintaining autonomy longer, and preserving quality of life.

Maintain Rather than Improve

In relapsing forms, the goal of cognitive stimulation is often to improve performance or maintain between relapses. In progressive forms, the goal is often maintenance: keep capabilities as long as possible, slow inevitable decline. It is a different but equally important and rewarding goal.

Every month, every year you maintain your cognitive abilities is a victory. Do not underestimate the importance of stabilizing your situation rather than seeing it rapidly deteriorate.

Stimulate the Residual Cognitive Reserve

Even in advanced progressive forms, the brain retains plasticity and adaptation capacity. Cognitive stimulation encourages this residual plasticity and strengthens compensatory pathways. The more you stimulate your brain, the more you help it find alternative strategies to maintain its functions.

Adapt Cognitive Stimulation to Progressive Forms

Cognitive stimulation in progressive forms must be adapted to the capabilities and limits of each person. The goal is not to put the brain under pressure but to keep it active appropriately and pleasantly.

Favor EDITH for Its Gentleness

The EDITH program is particularly suited to progressive forms. Its approach without time constraints, its three levels of difficulty, and its variety of exercises allow effective stimulation without stress or frustration. You can work at your pace, take the necessary time, and adjust the difficulty to your current form.

• Easy Level: For difficult days or to start gently.
• Intermediate Level: For regular suitable training.
• Difficult Level: For good days when you feel capable of more.

JOE for Good Days

If you have periods where you feel relatively well, JOE can be used for more intense stimulation. Timed exercises offer an additional challenge that can be beneficial to stimulate brain plasticity. However, do not hesitate to return to EDITH if JOE becomes too tiring or frustrating.

Regularity Over Intensity

In progressive forms, regularity is more important than intensity. Short, adapted daily sessions are more beneficial than long, spaced ones. 15 to 20 minutes a day, every day, is ideal. Integrate cognitive stimulation into your daily routine so it becomes a natural habit.

Beyond Cognitive Stimulation: A Holistic Approach

Cognitive stimulation is an important pillar but should not be the only element of your strategy. A holistic approach combining several factors offers the best results to maintain cognitive abilities.

Adapted Physical Activity

Physical exercise remains beneficial for the brain even in progressive forms. It should be adapted to your capabilities: walking with aid if necessary, seated exercises, swimming, stationary cycling, physical therapy. Even modest exercise has positive effects on mental health and mood.

Social Life and Meaningful Activities

Maintaining an active social life and meaningful activities is essential for cognitive health and morale. Social interactions stimulate the brain, and meaningful activities provide purpose and motivation. Adapt your activities to your capabilities but do not give up on having a rich and interesting life.

Managing Fatigue

Fatigue is often major in progressive forms and directly impacts cognition. Learn to manage your energy: plan cognitive activities at times when you are most alert, take breaks, do not overload your days. Good fatigue management allows you to make the most of your cognitive abilities.

I've learned to listen to my body and brain. I do my EDITH exercises in the morning, when I'm freshest. In the afternoon, I rest. This organization allows me to maintain regular cognitive stimulation without exhausting myself. It's a balance that took me time to find but works well for me.

Bernard, 62 years old, PPMS for 10 years