“Like Russian roulette”: Life with relapsing-remitting Multiple Sclerosis

Insights from a patient and an advocate

Summary

Multiple sclerosis (MS) is a central nervous system disorder that an estimated 2.3 million people around the globe live with. 

This article is an attempt to understand this often unpredictable condition and life with it. It is based on the Brain Health podcast interview with Alexandre Guedes da Silva, the director and vice-president of Multiple Sclerosis Society of Portugal. 

In the interview, he was kind enough to share his personal experience with multiple sclerosis symptoms and thoughts on what society could do about the quality of life among patients with MS. 

The Guest

Engineer by profession, Silva is not only an advocate trying to raise awareness about the disorder, but also a  patient himself, living with remitting-relapsing MS for decades.

SPEM is a member organization of the broader European Multiple Sclerosis Platform (EMSP), an association founded in 1989 in order to make sure the patients with MS have a voice in determining health policies and research goals on the European level. Currently, the platform relies on “a growing network of 40 member societies in 35 European countries”.

Interview highlights and key insights

“In my case, the diagnosis took 20 years”

The very fact that it is possible to live for decades with the disease without actually knowing it, is what Silva points as one of the most worrying aspects of MS. It is especially common in the relapsing-remitting type, which affects 80% of all patients with MS. “All the cases are different from each other,” Silva says, explaining why misdiagnoses are so common, resulting in MS patients being treated for wrong things. 

In his case, it started with eyesight issues, so he originally ended up with a prescription for eyeglasses. However, he soon realised that he did not actually need them, and kept “jumping from doctor to doctor” for years before finding out the true nature of his condition. In other patients it may begin with hearing problems, or with problems associated with muscles and other body parts - MS-induced “lesions in the nervous system are totally random”, and therefore any part of the body may be affected.

The only certain way to diagnose it is the MRI of the brain.

There is no cure for MS yet, but the earlier the disease is discovered, the more chance there is to “change the course of the disease” and make it “progress slower”. Furthermore, 65% of relapsing-remitting patients end up suffering from secondary progressive MS (Compston & Coles, 2008; Lublin & Reingold, 1996), characterized by progressive neural decline. This is why early discovery of the disease is the main priority of SPEM and other members of EMSP. To facilitate early diagnosis, they constantly campaign for patient advocacy and awareness-raising, and encourage research, data-collection, and sharing of knowledge. Looking up an association in your country using EMSP’s map is, therefore, a good starting point for everyone who needs more information about the disease and the related services provided in their surroundings, as a patient or a care-provider.

Unpredictable relapses and fatigue: accommodating to the disease

Silva has a good reason to compare living with relapsing-remitting MS to playing Russian roulette - the attacks he suffers from cannot be anticipated or prevented. Their duration and intensity is also “quite random”, in his own words. Associated with various parts of the brain or spinal cord, these attacks affect various body parts. As a result, there is a need for a personalized approach to treating the disease. Together with the numerous co-occurring conditions that follow MS, this calls for a more interdisciplinary approach on the part of the clinicians. Silva claims that it is detrimental to the patients’ state if the disease is viewed as a strictly neurological problem. 

What all patients with MS have in common, according to Silva, is a certain lack of energy, a sort of fatigue that manifests both physically and mentally. Combined with stress that comes with working with people, or physical exhaustion of manual work, this fatigue can trigger an attack. To improve the quality of life in patients with MS, it is, therefore, important to help them manage their professional lives. 

The way to achieve it?  Help them find work that would give them privacy and space to successfully deal with the condition and minimize the risk of relapse.

Technology and MS: communication, neurorehabilitation, and robotics

Adjustments in the area of professional life is where technology has the most prominent role. Alexandre Silva points to widely used communications and information exchange technologies that allow remote work. He explains that these are already improving the quality of life among patients with MS, and advocates for more inclusion of such technologies in work environments.

Another aspect where technology may prove useful is neurorehabilitation. Silva adds that, as the disease progresses, cognition is more and more likely to be “compromised”. The main characteristic of multiple sclerosis is myelin. In case of relapsing-remitting type of the disease, the myelin is being restored in-between the relapses. As a result, neurorehabilitative interventions may prove conducive to faster and more efficient myelin restoration, regenerating the parts of the brain affected by lesions. 

Besides that, damage to the myelin sheath (the myelin layer covering nerve cells) slows down information exchange between nerve cells, bringing about cognitive slowness and issues with learning, memory, and attention. In that regard, cognitive exercises can add to restoration of patients’ abilities and improvement of their quality of life. 

Finally, assistive technologies are being developed within the field of robotics. Exoskeleton-technology that helps the patients overcome problems with motion might become more and more accessible to the general public. Unfortunately, it is not yet the case, Silva points out, as most of this technology is still “in the prototype phase”.

Explore further

To find out more, listen to the whole podcast episode through your preferred channel:

ApplePodcasts

Google Podcasts

Spotify

BrainHealth Podcast’s own website

*The podcast is also available on most popular podcast apps, like Podbean, Overcast, etc.

The Hosts

Kim Baden-Kristensen is the co-founder and CEO of Brain+, a digital therapeutics company that helps people with brain disorders and injuries to recover their fundamental cognitive brain functions and daily life capabilities by using an app-based cognitive rehabilitation platform, which is developed in close collaboration with patients, clinicians and researchers. https://www.dhirubhai.net/in/kbadenk/

Alessia Covello is a life science IT consultant working in the field of healthcare technology implementation, and advocating for better services for people with brain conditions and learning disabilities. https://www.dhirubhai.net/in/alessiacovello/ 

Resources, links, references

Currently accessible or currently developed technologies:

• MS Kognition neurorehabilitation software

Cognitive exercises for memory, attention, and executive function, in the form of video games, developed by interActive Systems, in coordination with German Multiple Sclerosis Society (DMSG). The games are free to play on the website - unfortunately, they are only available in German. Available as an app for Android and iOS devices, too.

• Ekso exoskeleton technology

The exoskeleton solutions developed by Ekso have been examined for feasibility to assist patients with MS in walking, in a study done by the University of Texas Health Center at Houston, TIRR Memorial Hermann Rehabilitation Hospital, and Texas Women’s University, and funded by the National Multiple Sclerosis Society in the USA. You can read more about the study here.

• ReWalk Personal Exoskeleton

It is “the only FDA-cleared exoskeleton in the United States” according to Multiple Sclerosis News Today. Recently, ReWalk Robotics started a five-year collaboration with Wyss Institute to develop an exoskeleton particularly aimed at patients with MS. 

Discussion points:

What is Multiple Sclerosis? (min. 3:35-10:10)

- What if the diagnosis arrives too late? (5:15)

- Current theories and different forms of the disease (6:10)  

- What is myelin and what do we need it for? (7:20)

- Types and stages of the disease (8:05)




Multiple sclerosis diagnosis (min. 10:20 - 17:00)

- Alexandre’s personal experience of early MS symptoms and diagnosis (10:20)

- The unpredictability of the disease’s manifestation and the difficulty to diagnose it (12:20)

- Ways to diagnose MS (14:45)




Living with MS - what is it like? (min. 17:20-26:00)

- Situations to avoid (19:20) 

- What unifies the physical and the mental problems in MS? (20:50) 

- Professions suited for people with MS (23:10) 




Treatments: Difference between treatments for different phases and types (min. 26:45)


The importance of awareness and the roles of SPEM and EMSP (min. 29:37)


Possible treatments to regenerate cells damaged due to the disease (min. 32:10) 


MS and dementia (min. 34:42)


Digital technologies and robotics as assistive technologies for patients with MS: improving the quality of life through widespread communication technologies (min. 35:27) 



What SPEM and EMSP do to improve research and data-collection (min. 39:50 - 42:40) 


Distribution of MS - geographic, genetic, and lifestyle factors (min. 42:55)


How to improve overall quality of life: Physical rehabilitation, job adaptations, the need for personalized solutions (min. 48:55)

Take-home messages for researchers, clinicians, and patients (min. 51:20) 

Disclaimer:

All references to products, companies, and organizations in this podcast and the article that accompanies it are included with the purpose to inform, rather than promote or advertise. The authors do not receive financial compensation for any of these references.