caregivers, cared for, together we can move on »

What’s up Doc: What challenge will you try on Sunday?
Géraud Paillot: We will try with Mathieu Vaillant to achieve a world record for the long distance triathlon sequence, in the Semi Ironman format. So we swim 1.9 km, 90 km by bike for Matthieu and by handbike (arm bike) for me, and we go to the 21 km half-marathon, he runs, I in a wheelchair. We will try to do this in consecutive days. So we will start on Sunday August 28 at 6:30 in the morning and every day we will repeat the same program. We are also accompanied by athletes or people with disabilities, who come and do an activity that is within their reach. Our message: caring caregivers, together we can move forward. In projects we can reveal the strength that we have. We can move forward by being part of a collective. We want people to want to join a project to restore themselves and improve together.

How do you get to such a level?
PM:
I was diagnosed with multiple sclerosis in 2004. At the time I was working 12 hours a day, I was a senior executive in a large industrial group. I stopped the game, because I was told, with this disease, the game is over sir.
Then the vision of the sport changed over time, and I got back to it through yoga from 2012.

And in 2017, the evolution of the pathology and the appearance of mental disorders, forced me to stop working. Second strong break in my life, after announcing the illness. I realized that I wanted to give meaning, to show those around me that I will not give up and that we can move forward with the disease. So I decided to cross France to meet patients, tell them that we can have dreams and make them come true. I launched the Aventure HUSTIVE association (people and sporting), I gave 8 conferences in France, and I did Paris-Marseille by kayak. I’m not the TGV in 3 hours, it’s 55 days!

Do you find meaning in making yourself these challenges?
PM:
I am also very involved as an expert patient (which I prefer the term resource patient) in the ETP (Therapeutic Patient Education) part. And I am co-founder of the patient department at Grenoble-Alpes University. We have 3 important missions: to educate patients on TPE, the initial and continuous training of caregivers to bring the voice of patients, to participate in research programs.

How did you find out about ETP to join?
PM:
A neurologist from the Grenoble hospital, now a little more known, named Olivier Véran, explained to me that he would see me very well in these ETP procedures. And I am trained, and I invest a lot because it is something that enables the patient early in his pathology to better understand this world of chronic disease where he enters, and to see what way to move forward. I think these programs are amazing, they make caregivers and patients work together, they allow these two worlds to meet better.

And concretely, what are you doing?
PM:
In the pure ETP part, with the Grenoble team of the ETP7 program, I intervene, I lead or co-host workshops with caregivers, we debrief after each session, we develop the program , if necessary, we work on new workshops. On the part of the patient university, we work on research, I am part of the scientific committee led by the Roche laboratory, on patient autonomy. Workshop with future doctors, pharmacists, with patients, we make interactions, we reflect on the use of these terms, we debrief. We strive to improve interaction. It is very different and it has a lot of value in chronic disease, but also for caregivers, it allows them to change their perspective and work together better.

And how did you form your playing partnership with Mathieu Vaillant?
PM:
I worked with Mathieu Vaillant, the neurologist who accompanied me on my challenge, to precisely implement an ETP program. The team of doctors in Grenoble is very involved with the patients and naturally they started to participate in some of our challenges, whether it was Matthieu or other doctors in the department. We have done a number of sports projects where it comes when they can. And one of our messages is to promote holistic, global care for patients: medicine, caregivers, associations, resource patients… We are all moving in the same direction, to learn to row of the disease.
Matthieu has already participated in the first Semi Ironman in 2020 and I remember a patient who contacted me and told me that I want to see this doctor, let him follow me. Because a doctor who reads the t-shirt, who spends a Sunday running with people with disabilities, the sick, is a method that interests me. And now he is her doctor. It breaks the codes. On both sides, the relationship is not obvious, for the patient, the doctor is the authority, he asks a lot of questions, the schedule is complicated, the relationship is complicated. And next to the doctor, the treatment is not so easy, when we talk about TPE, the coat is gone, we are talking about sharing, trust, exchange.

Accompanying a challenge, it changes appearance. Together, we will continue!

Dr Mathieu Vaillant: “I want to see the patient as a partner, not in a high vision, but in a collaborative vision”

Mathieu Valiant

What’s up Doc: Doctor, are you athletic?
Matthew Valiant: I have always been a recreational athlete, and I started triathlon 2 years ago with Géraud Paillot who offered me a first semi-long distance triathlon between Aix-les-bains and Grenoble. And we continued last year with a long distance triathlon in Brittany. And this is the third year. In general, I play sports alone, with family or with friends, but for patients sports activities are important, especially with multiple sclerosis, sports are a good complementary therapy. So a few years ago, with an association of patients from Grenoble, we had an MS and Sport day, to talk about the benefits of physical activity and from there we strengthened the information in sporting activities and obtaining symptomatic management of multiple sclerosis. Promoting sport for patients.

For Géraud Paillot, are you still his doctor or his partner in the sports challenge?
MV: I am not his direct neurologist doctor, in Grenoble we work in a team with three neurologists specialized in the field of multiple sclerosis, so I am not very much every day for his disease.

What is your message in this challenge?
MV: A message for patients: for a long time in cases of multiple sclerosis, we said, you have to stop the sport, it aggravates the disease, it is not now, the sport activity is appreciated. It improves disease symptoms such as fatigue or better exercise tolerance.

It has a little intense challenge, with a high intensity of the sport, but everyone should find their own adapted practice, with their own goals, do it slowly and appreciate the pleasure in physical activity. And do it well surrounded, according to the doctor, with people who can help, the physiotherapists of the APA.
On the doctor’s side, Géraud is a patient resource at ETP, and at ETP we see the patient as a partner, not in a high vision, but in a vision of collaboration. And that is what we are doing, moving forward together, carefully tending to the same goals, and listening to each other taking into account each other’s constraints.

How did you prepare with Géraud?
MV:
We often come together to learn how to prepare physically, nutritionally and in terms of managing fatigue. With non-drug therapy, with hypnosis techniques, mental projection, which allows difficulties to be anticipated.

It is not specific to Géraud, everything we use in this challenge is still used every day by other patients in stress management, projection, treatment management, MRI scanning, all useful not only in big challenges.

Do you feel this challenge, do you have time to prepare?
MV:
Let’s see after. I live in an area where you can easily walk to the mountains. I took this summer off to train. I had the opportunity to work in a day hospital unit, with a passionate, enthusiastic team. I am happy with what I do. I like working at CHU, I like the link with colleagues and patients, we understand each other and move forward together.

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