{"id":1602643,"date":"2020-10-06T20:12:55","date_gmt":"2020-10-07T00:12:55","guid":{"rendered":"https:\/\/divine.ca\/?p=1602643"},"modified":"2020-10-09T13:15:28","modified_gmt":"2020-10-09T17:15:28","slug":"womeninspiringwomen-linda-berard-founder-of-entraidonsnous","status":"publish","type":"post","link":"https:\/\/divine.ca\/en\/womeninspiringwomen-linda-berard-founder-of-entraidonsnous\/","title":{"rendered":"#WomenInspiringWomen: Linda B\u00e9rard, Co-Founder of Entraidons-Nous"},"content":{"rendered":"

Did you know 25 people are diagnosed daily with Parkinson\u2019s disease?\u00a0 Even with these statistics, people still know very little about it.\u00a0 If pushed, they may remember that actor,\u00a0 Michael J Fox has it.\u00a0 According to Parkinson Canada, \u201cParkinson\u2019s is a neurodegenerative disease. Movement is normally controlled by dopamine, a chemical that carries signals between the nerves in the brain. When cells that normally produce dopamine die, the symptoms of Parkinson\u2019s appear.\u201d<\/p>\n

Parkinson\u2019s is complex because no two people experience it in the same way.\u00a0 Often, it takes a family doctor who has been with the patient for a number of years to recognize what the changes are in the patient\u2019s motor and non-motor symptoms.\u00a0 The next step is to see a neurologist, a movement disorder specialist and other specialists who can help with the diagnosis, but there is no single test or system and there is no cure for Parkinson\u2019s.<\/p>\n

Although Michael J. Fox was just 29 years old when he was diagnosed, most people think of Parkinson\u2019s as something that afflicts senior citizens.\u00a0 It can affect people of all ages.\u00a0 In fact, according to Parkinson Canada<\/a>, 20% of people who have Parkinson\u2019s are below the age of 50.<\/p>\n

Linda B\u00e9rard is one of that 20% – she was diagnosed at just 44 years old.\u00a0 Her life before her diagnosis was normal.\u00a0 She was enjoying her children and life with her husband.\u00a0 Since she had her children right away, she and her husband were at the point where they could enjoy a little freedom. \u00a0They started traveling.\u00a0 She was at the top of her game career-wise working as a marketing analyst and strategist.\u00a0 The day of her diagnosis, her life changed forever.\u00a0 But she didn\u2019t let the disease stop her from living.<\/p>\n

Linda co-founded a non-profit organization \/ support group called \u201cEntraidons-Nous\u201d<\/a> translating to \u201cLet us help each other\u201d in English, a partner of the Quebec Parkinson Network. Their mission is to support diagnosed people with Parkinson\u2019s disease, and their care partners, who play a critical role in disease management and quality of life.<\/p>\n

The grandmother of three is not only smart, and caring, she is also the latest subject of our #WomenInspiringWomen<\/a> series.<\/p>\n

\"Parkinson's:<\/p>\n

You were diagnosed at quite a young age with Parkinson\u2019s Disease.\u00a0 How did you cope with the initial diagnosis?<\/h2>\n

First of all, I felt complete shock.\u00a0 You almost feel knocked out.\u00a0 Boxing is great exercise, but when you hear that you have Parkinson\u2019s you feel knocked out.\u00a0 Like most people, I thought that Parkinson\u2019s was just for seniors. I had some tremors, but not severe enough to lead me to think that it could be Parkinson\u2019s.\u00a0 I thought that maybe I had been drinking too much coffee.\u00a0 Then the depression and isolation settles in.\u00a0 You really go into complete shock. \u00a0I also didn\u2019t know a lot about it.<\/p>\n

Your daughters were teenagers when you were diagnosed.\u00a0 As a parent, you are not only a patient, but a mother worried about her children.\u00a0 How did you work through their challenges and stay focused on your own needs?<\/h2>\n

They were almost adults when I was diagnosed with Parkinson\u2019s.\u00a0 When I was 16, my father was diagnosed with Multiple Sclerosis (MS).\u00a0 It hit him at the speed of lightening.\u00a0 He spent the last five years in a hospital bed.\u00a0 It really hit my family hard and took a toll on my mom.\u00a0 I saw the impact that it had on her and I clearly remember the impact that it had on me.\u00a0 I still tear up when I think about it 30 years later.\u00a0 I know that what\u2019s happening is not my fault, but the guilt that I have to cope with is hard.\u00a0 I just tell my daughters to follow their dreams, whatever they are, and not to deprive themselves of anything in their lives on my behalf.\u00a0 That\u2019s important to me.<\/p>\n

\"\"<\/p>\n

What type of support system do you have?<\/h2>\n

Medically speaking, from day one, my general practitioner encouraged me to go to the Montreal Neurological Institute<\/a>.\u00a0 He was so right when he said that you will be in the best hands.\u00a0 In speaking with people that were in a similar situation, I\u2019m so glad that I followed his advice.\u00a0 They ran a series of tests that led to my diagnosis.\u00a0 I think that Parkinson\u2019s is a hypothesis.\u00a0 By process of elimination, it becomes the conclusion.\u00a0 The true diagnosis will come at your autopsy. That is the only time where there is a 100% diagnosis.<\/p>\n

It sounds weird to say it, but I felt lucky because within two days of my diagnosis, I received a phone call from the Movement Disorder Programme from a nurse named Lucie Lachance. She\u2019s probably one of the top nurses in the world in the field of Parkinson\u2019s.\u00a0 She\u2019s even been to China to give some training. She is part of the World Parkinson Coalition and she\u2019s very renowned.\u00a0 I am privileged to be under her care.\u00a0 \u00a0She took not only me, but my husband and family under her wing. Along with Dr. Edward Fon, my neurologist whose heading up the Canadian Open Parkinson Network<\/a>, they have been taking care of me for the last seven years.<\/p>\n

Dr. Fon launched the program in Quebec and because I am one of his patients, I was one of the first to enroll in the program. Other people with Parkinson\u2019s are encouraged to register in the anonymous database. The Canadian program is based on what he did in Quebec with the QPN (Quebec Parkinson Network).\u00a0 I called them a few years back and said that I was ready to assign my brain for Parkinson\u2019s research.\u00a0 At the time, they didn\u2019t have an account with a brain bank, so they had to open one up so that I could enroll to leave my brain specifically for Parkinson\u2019s research.\u00a0 They know my history from day one of my diagnosis, so it is good for them [for research purposes].<\/p>\n

In addition to my doctors and nurses, a good kinesiologist who is a valued member of my health care team. Of course, my family is a major support system. My husband and children have been there for me 100% as well as some old and new friends.<\/p>\n

\"Parkinson's:<\/p>\n

What is the best way, in your experience, to support someone who has been diagnosed with Parkinson\u2019s any type of long-term illness?<\/h2>\n

First, they need to be very patient.\u00a0 I\u2019ll be the first to admit, that these people are totally underrated.\u00a0 I often forget to be thankful.\u00a0 I went to a conference a few year\u2019s back for caretakers.\u00a0 They showed the image of what to do on a plane in case of an emergency \u2013 where you put on the mask.\u00a0 The advice is to put on your mask first before putting on your child\u2019s mask.\u00a0 The image was about how caretakers can\u2019t always be at the mercy of the person that they take care of.\u00a0 They have to give themselves time as well, because a sick caretaker can\u2019t be a caretaker.\u00a0 A friend of mine had her husband die a few months ago, and she was his caretaker for the last ten years.\u00a0 At one point, she had forgotten about herself, and he kept reminding her that she needed to take breaks.\u00a0 Thank God, because she was his support right until the end.<\/p>\n

You chose to take part in clinical trials for treatment of Parkinson\u2019s.\u00a0 Why did you make that decision?<\/h2>\n

My answer to that is why not? I figured if anything I can do will help; I should try.\u00a0 My hope is that this disease, one day, will be talked about in the past tense.\u00a0 I have a locket that I wear around my neck and there is a little message in there that says \u201cI donated my brain to research.\u201d\u00a0 I did it in the name of my children and my grandchildren.\u00a0 For me, if this is the last generation that needs to contend with Parkinson\u2019s, then I\u2019ll have done what I needed to do.<\/p>\n

People with diseases are often given the added pressure of being made into heroes because of their condition.\u00a0 How do you manage these expectations on days when you aren\u2019t feeling as positive?<\/h2>\n

I don\u2019t understand this thing about being a hero.\u00a0 For me, a hero is somebody that goes beyond their capacity.\u00a0 I don\u2019t.\u00a0 I show up and I am what I am.\u00a0 On those days when things are off, well that\u2019s part of my reality.\u00a0 I\u2019m not always comfortable meeting people when I\u2019m feeling off, but if I really want to show the whole picture [of Parkinson\u2019s] it\u2019s part of what I have.\u00a0 When people ask, \u201cHow are you?\u201d, we always answer fine \u2013 it\u2019s the answer that we give instantly, without any thought.\u00a0 With Parkinson\u2019s, I\u2019m not always fine.\u00a0 If I want to show the reality behind the disease that\u2019s haunting me, and taking 20 years off of my life, my answer is to always show it the way it really is.<\/p>\n

You co-founded a non-profit organization \/ support group called \u201cEntraidons-Nous\u201d<\/a> and are involved in the Quebec Parkinson Network.\u00a0 Why did you decide to not only be part of a group, but to begin helping people with Parkinson\u2019s yourself?<\/h2>\n

The Quebec Parkinson Network<\/a> is specifically for research.\u00a0 In terms of support groups, forty-four years old is young to be diagnosed with Parkinson\u2019s.\u00a0 There are support groups out there, but the reality is when you find yourself in the room, you may be the youngest one there. The first support group that I ever went to, I went with my husband.\u00a0 There were 7 or 8 people in the room, and almost every person was older \u2013 that\u2019s the reality.\u00a0 Even in the waiting room at the hospital, if I\u2019m looking for someone my age, they are usually there to accompany their parents to their appointment.<\/p>\n

The realities are not the same.\u00a0 Seniors have a lot to offer, and I\u2019ve met and created some friendships with them.\u00a0 But, most of these people are retired or are about to be.\u00a0 They aren\u2019t at the same point in their lives dealing with the disease.\u00a0 We didn\u2019t have a lot in common and I felt even more isolated when I went to those support groups at first.\u00a0 Then I met some friends that were feeling the same and we started getting together and really having exchanges.\u00a0 I thought this was great, so why not share it with others?<\/p>\n

In 2018, we went all across the province to meet more people.\u00a0 One of the members, who was diagnosed over ten years ago, rode his bicycle across the province for two weeks and did 2,200 kilometers.\u00a0 He actually crossed the country in 2016.\u00a0 It is really inspiring.\u00a0 Our goals are to place attention upon the disease and really shine a light on it because it still isn\u2019t widely spoken about.\u00a0 We want to remind people that there are services out there that can help.\u00a0 I had friends that got the diagnosis and the doctor basically told them good luck \u2013 no more than that.\u00a0 I\u2019m lucky that I have access to people like Lucie Lachance \u2013 I feel very privileged.<\/p>\n

What impact has COVID had on you, in particular, but also, generally speaking, for people with Parkinson\u2019s?<\/h2>\n

COVID and confinement has had a huge impact on people, but particularly people with Parkinson\u2019s disease.\u00a0 In my case, I think I lost more in the last six months than in the first seven years.\u00a0 Parkinson\u2019s is related to lack of dopamine and dopamine is one of those things that you need to be happy.\u00a0 Most people with Parkinson\u2019s go through some type of depression.\u00a0 I fought the depression and forced myself to get out of the house and stop isolating myself.<\/p>\n

With COVID, we had to go back to that.\u00a0 I understand why and I\u2019m not questioning the decision.\u00a0 It obviously saved many lives.\u00a0 But it brought me back to dark times.\u00a0 It brought more stress, and I can\u2019t say enough about stress.\u00a0 It\u2019s the worst thing for Parkinson\u2019s.\u00a0 Parkinson\u2019s is degenerative, whatever you lose will not come back.\u00a0 I could go without medication for two days but the minute that I have stress, it\u2019s absolutely the worst thing.\u00a0 It will take me from 100 to zero in two seconds.<\/p>\n

How has your attitude towards the disease changed since you were diagnosed in 2013?<\/h2>\n

I don\u2019t think it has changed, I\u2019m still angry.\u00a0 I don\u2019t think that I\u2019ll ever accept it.\u00a0 I\u2019ll come back to Lucie and she\u2019s the one who told me that I was spending a lot of time and energy trying to accept the diagnosis, why don\u2019t you just try to learn to live with it? Some people think it means the same thing.\u00a0 It doesn\u2019t.\u00a0 When I understood that, and the difference is subtle, it took a lot of the weight off of my shoulders.\u00a0 Trying to accept it is something that I\u2019m not longer focused on.\u00a0 I\u2019m just trying to make the best out of it.<\/p>\n

Your story and willingness to share it is inspiring.\u00a0 Who inspires you?<\/h2>\n

\"Parkinson's:<\/p>\n

It\u2019s funny when you hear how others answers this question. People will come up with a celebrity like a hockey player, a singer or a movie actor.\u00a0 We need to look closer than that.\u00a0 My family, for sure inspires me.\u00a0 Everyone around me inspires me.\u00a0 Ultimately, there is this one girl who I\u2019ve known since she was born, Sandrine Korsos. Sandrine is going to be 18 in November and she was born with spina bifida.\u00a0 She has undergone 31 surgeries and is a real fighter.\u00a0 She could have given up so many times and her parents could have too.<\/p>\n

Last Christmas, Sandrine came close to passing but she survived.\u00a0 This little girl was never supposed to walk, yet she walked until she was ten.\u00a0 She skated, swam in competitions and participated in horse-riding events.\u00a0 She can\u2019t walk anymore but she plays luge hockey.\u00a0 She is learning her fourth language right now.\u00a0 She is making the most of what she does have and not focusing on that she doesn\u2019t have.\u00a0 She is a huge inspiration for me, and I love her to death.<\/p>\n

One of my daughter\u2019s graduated from McGill nursing and when she was having difficult times, it\u2019s a challenging course, she would remind herself about why she made that choice. It was because of this girl, and that kept her on track.<\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"

Did you know 25 people are diagnosed daily with Parkinson\u2019s disease?\u00a0 Even with these statistics, people still know very little about it.\u00a0 If pushed, they may remember that actor,\u00a0 Michael…<\/div>\n
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