Talking about Secondary Progressive Multiple Sclerosis Transcript

Video

Audio


On-Screen – Dr. Morrow

Dr. Sarah Morrow
Neurologist and Director of the London (Ontario) MS Clinic, Western University, and Founder and Director, MS Cognitive Clinic, Parkwood Institute

Dr. Morrow:
It’s important for people with MS to realize that we know they’re going to be living with the disease for the rest of their lives. We know that there are going to be changes over time, that’s the nature of the disease.
Opening Montage

Real Patients Speak (RPS) Screen:
Title: Talking about Secondary Progressive Multiple Sclerosis with Dr. Sarah Morrow

Voice Over:
More than 90,000 Canadians, or 1 in 400, are affected by multiple sclerosis, a chronic autoimmune disease of the central nervous system.

Today, we visit with Dr. Sarah Morrow to learn more about the importance of communication and collaboration between people living with MS, their neurologists and care teams when it comes to the complex journey from relapsing remitting multiple sclerosis, or RRMS, through the secondary progressive stage of the disease, or SPMS.


On-Screen – Dr. Morrow


In MS, the immune system
attacks the myelin, which
is the protective layer
surrounding nerves.

This disrupts messages
from the brain to the
different parts of the body, producing unpredictable symptoms such as:

• Fatigue
• Numbness and tingling
• Vision problems
• Weakness
• Poor coordination
• Bladder problems
• Mood changes
• Cognitive impairment

Dr. Morrow:
Multiple sclerosis is a complicated neurological disease where you get damage to the white matter in the brain and the spinal cord. The white matter acts as that insulation around nerves. The signal can’t get from one part of the brain to the other, which then manifests itself as different neurological symptoms. I tell my patients we call it multiple for a reason.
B-roll
Voice Over:
Multiple sclerosis usually starts as relapsing remitting MS (or RRMS). Most people diagnosed with RRMS will eventually transition to a phase of the disease called secondary progressive MS (or SPMS).

On-Screen – Dr. Morrow
Dr. Morrow:
Secondary progressive is a type of MS that is secondary to having relapsing MS.

After having these episodes of acute symptoms that come on and stay with you for a while and then get better, you then start to show slow worsening overtime, gradual worsening that accumulates disability overtime.

Progression with MS, or a progressive stage of the disease, is difficult to identify, even for clinicians. There are actually no diagnostic criteria as to how to identify someone who has a secondary progressive MS course.

On-Screen – Gaby
Gaby Mammone, Diagnosed with RRMS in 2004

Gaby:
I go by Gaby, Gaby with one “B” and I was diagnosed with MS 18 years ago. I remember when I was in my 20’s I was experiencing symptoms, like incontinence, and spasticity, tightness of my knees and I had tingling fingers, and toes. I even lost peripheral vision in my left eye. And I didn’t know what it was at the time, went through several tests and then by the time I was 30 I was diagnosed with multiple sclerosis.

What I’ve noticed over the years is a progression of symptoms. And so, that’s how I know that if I’m not in stage two, I’m very close to stage two because I’ve noticed my cognitive challenges become more prevalent. I’ve noticed my tingling and spasticity worse. I have issues when I put my head on my pillow at night. The itching is extreme.

The key here is, whenever you go through a symptom it’s very important you track it, in your app tracker, in your journal, in your notebook, your phone. What someone will need to do is find what works for them.

On-Screen – b-roll of the Your MS Questionnaire on MyRules.ca
Voice Over:
People living with MS are encouraged to track their physical and cognitive symptoms. Just as gradual worsening of physical symptoms may indicate your disease is progressing, cognitive issues often occur more frequently and more severely at this stage.

Understanding all of your symptoms over time, in addition to a neurological exam, helps your neurologist make a diagnosis of progressive disease.

On-Screen – Dr. Morrow
Dr. Morrow:
Our focus in our practice is really improving and maintaining the quality of life and the function of our MS patients. Identifying progression in MS is very important, no matter what stage of disease patients are in, whether it’s at the beginning, just after diagnosis or if it’s after they’ve had it for a decade or so.

And, what makes it difficult is, we as clinicians don’t always have a great way of measuring it. So, a patient may come in to me and say, “Doctor Morrow, I’m worse than I was before.” And I do a neurological exam and I don’t find anything different in what I saw from the year before. But they’re telling me, “I’m worse”, and part of it is because a lot of these symptoms are ones that we can’t measure objectively.

Similarly, no one comes to me and says, “I’m not good at my job”. MS does not affect intelligence. So, I always tell my patients you’re still the same smart person you were before, it just might be that MS is affecting your memory and your thinking, in the same way it might affect your balance.

Most people won’t think that that’s due their MS. They’ll say, “Oh it’s because I’ve got a lot of deadlines at work”, or “I’m really busy with extracurricular activities with the kids”. And they don’t realize it’s actually due to the disease process. It’s easy to write it off to something else because it’s not a visible symptom.

B-roll 
Voice Over:
As a chronic disease, MS requires ongoing collaboration between people living with it, their neurologists and care teams to understand and manage symptoms, prevent complications and maximize quality of life.

On-Screen – Gaby
Gaby:
We are our best advocate. As I progress it’s very important that I increase my knowledge. I speak with newly diagnosed people very often, and sometimes they ask me about collaboration and collaborating with their health care team. And I would have to say that being prepared is very important before you actually go into an appointment.

On-Screen – Dr. Morrow
Dr. Morrow:
Often, when patients are given the diagnosis of secondary progressive MS, they feel hopeless or as if there’s nothing more that can be offered. And I think that’s a misunderstanding of the disease process overall.

There’s still so much we’re learning about MS. No matter the stage of the disease, whether it’s progressive or relapsing, there’s still so many scientific advances being made.

B-roll
Voice Over:
Gaby shares what’s really important, no matter what stage of her journey.

On-Screen – Gaby
Gaby:
My family is very important to me. I have a 13-year-old boy and six-year- old girl, and they are the absolute world to me. I love playing the piano. I love researching the human brain. I find it completely fascinating how it works. I do love to read, but I love life. I love life and I am making the best of it.


RPS Screen:

To learn more about SPMS and to download
a questionnaire to help track your symptoms, visit MyRules.ca.

Close-Screen RPS scrolling MyRules.ca

This segment was made possible through financial support from Novartis Pharmaceuticals Canada Inc.

Voice Over:
To learn more about SPMS and to download a questionnaire to help track your symptoms, visit MyRules.ca.