Your Wounds Are Part Of Who You Are

‘Bad things happen to good people.’ It’s a phrase I have heard dozens of times in my life. It’s also a phrase that I hoped would stay clear of my family, my friends, and myself. However, sometimes you can’t stay clear forever. This blog is quite the exact opposite of my last one, a total 360. The reason being, there is no way you could ever measure a happy life without sadness in the picture; happiness would lose its meaning.

Everyone tells you to think positive, and you will have a happier and healthier life. As children, we make lemonade, and are taught to see the glass have full. But, there are moments that can change everything. We learn at a young age to buckle our seatbelts, to wear a helmet, and look both ways before we cross the street. We do our best. But sometimes, it makes no difference. Bad things come… and they come out of nowhere. There is no warning. This past summer, my sister had a terrible accident, a close family friend, and aunt died, and I had an accident at work. It was just one hit after the other. I felt like I was getting the wind knocked out of me, while I was still on the ground struggling to pick myself up from the last hit. Usually when something bad happens that affects me, I shake it off. Pretend it’s not there and pay no attention to it. Would it do any good anyway? But, you do need to heal. You need to feel your feelings, things need to be said and you need to go through the whole process, whatever it may be. To allow yourself to heal, you need to be a victim for a moment. After that, you are what you choose to become.

My cards are folded. I cannot change them. I have to live with them. They are what make up my year, my life. But sometimes, I lose myself. Sometimes, I want to pick up those cards, and send them flying over a tall building. Sometimes, I wish I could restart. Give back the deck and get a new one. As much as I think I have had the worst of luck- I cannot think that way. My sister is still here with me, and both my aunt, and family friend are out of pain. As for me, I survived. My wounds will heal. There is still an inner voice within me, and even though sometimes it’s a soft whisper, it still reminds me that I am strong enough. That I can be more. This is when never losing hope plays a role. The little reminder that things can get better. Things do change and it is not always what it seems.

So when things get tough, understand that it’s okay to not have on that brave face. I think it’s okay to break down, scream, cry, question. Because it’s only when you lose everything, can you rebuild. The hard things that have happened in my life have made my voice a little louder. To this day, I know my sister did not deserve what happened to her. I do not think I deserved what happened to me. My aunt did not deserve to be in so much pain on the last few months of her life, nor did she deserve to lose her life to a battle she never asked to fight. Our family friend should have kept on smiling and spending time with the ones she loved most. My mind will never change on that. So why? I cannot change their cards, just as I cannot change mine.

All I hope for is that you know how to play those cards, and you play them well. What I have realized more than before is that we do not get to decide what will happen to us, however, we can decide how we are going to live. Is the life you are living now how you want to live? Is this the best you can be? You have the power to decide.

There are memories, no matter how much I think about it, no matter how much I try, I can never bring it back. There is no going back. Despite it all, I believe there will be an end to the storm. It will not destroy me. I may have felt it rip me apart and the winds may have slowed me down but when all is done, is when I have learned. This is when I have realized, just how strong I am. That if I can survive one storm, I am strong enough for one more, and one more. Pain in life is bound to happen. Nobody can escape it. Sometimes it makes you feel like life is against you and you cannot do anything but feel worthless in the moment. Then, perhaps you wonder, do I deserve this pain? No… I don’t think so. Perhaps it means you are growing and perhaps there is something to be learned. What happens to us does not define our lives. It lies in what we do about what happens. Your power lies in your response, not in your circumstances.

Life will never be perfect, no matter how hard you try. There will be days that make you question yourself, that make you feel like you’re losing your battle. Your heart will break, and life, for a split second, may feel too hard.  Overall, you should never be ashamed or embarrassed by your wounds. I used to want to hide it, but now I embrace it. It’s a part of who I am. I am proud of my scars and overcoming every bump in the road was greater than anything else I ever did. My wounds made me dig deep and find something inside I didn’t know I had. My wounds had revealed me.

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Ivana was born in Sanski Most, Bosnia & Herzegovina, but moved to Canada at the age of three. She was diagnosed with LGMD a few years ago, and it has forever changed her life. She is a regular contributor, and her blogs will be everything she has learned along the way, and what she continues to learn today.

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Partnerships at Work

cliniccropLa version française suit.

Last year, a new educational venture was held with the support of Muscular Dystrophy Canada. In partnership with Holland Bloorview and Sick Kids this creation was a family day for those supporting people living with Spinal Muscular Atrophy (SMA); these included children, young adults and adults, as well as their families and caregivers. Dr. Reshma Amin explains how the Spinal Muscular Atrophy (SMA) Family Day came about:

“I work in the Complex Respiratory Care clinic at The Hospital for Sick Children along with Dr Theo Moraes, Cathy Daniels NP, Faiza Syed RRT and Ellie Lathrop SW. Our team follows children dependent on respiratory technology (eg BiPAP and invasive ventilation,) many of whom have neuromuscular disorders such as Spinal Muscular Atrophy. Many of these children are often jointly followed at Holland Bloorview Rehabilitation Hospital for their neuromuscular care by Dr. Laura McAdam, the co-chair of this event, and her team. In clinic one day, while we were discussing transition to an adult healthcare center, an adolescent mentioned that he wanted to go to university and that he would love to be able to talk to another young adult with SMA that was successfully attending university. This got us thinking that we should organize a family educational event to facilitate kids with SMA being able to talk to other kids with SMA about ‘real life’ issues.”

Over 100 individuals (a full house) attended the event – most from the Greater Toronto Area, but participants from Thunder Bay, Ontario and New Brunswick were also present. The goal for the day? “To increase awareness about Spinal Muscular Atrophy in the community and to further educate caregivers, and children affected by SMA,” says Dr. Amin. “More specifically we wanted to increase the knowledge of families and children surrounding the medical, and psychosocial impact of SMA. We wanted to provide a venue in which we could foster supportive relationships between affected families. Lastly, we wanted the children and their families to learn of and appreciate the current scientific research activities that are ongoing for SMA.”

The day consisted of listening to many speakers, and participating in discussions and networking opportunities:

“Our key speakers are internationally renowned for their work with Spinal Muscular Atrophy. Dr. John Bach, a Professor of Physical Medicine and Rehabilitation from University Hospital, Newark, New Jersey, who has unparalleled  clinical experience with those affected by this disorder, provided us with a provocative overview of the respiratory management of SMA. Brian Weaver, MS, RRT-NPS, RPFT, a respiratory therapist and Department Head at Kimble Medical Center, Newark, New Jersey, provided a practical review of the respiratory complications and the role of respiratory technology for children with SMA. Dr. Alex Mackenzie, a clinician-scientist from the Children’s Hospital of Eastern Ontario provided a high level review of SMA research and what clinical trials for children with SMA are current and planned.  There were many other speakers including Tracy Lacey, chair of Fight SMA Canada, her husband Shawn and their daughter Tori, who has been diagnosed with SMA, provided a practical overview of ‘living with a child with SMA’ from needed home modifications, to school considerations. Dr. Adam Rapoport, the Medical Director of the Pediatric Advanced Care Team at SickKids informed families of the support services their team is able to provide to their children and families. Karen Dunbar, Services Specialist for Ontario and Nunavut from Muscular Dystrophy Canada, provided a pragmatic, and informative overview of the services and supports provided by the organization to children and their families with SMA. Dr. Laura McAdam, reviewed the Canadian Neuromuscular Disease Registry, established with the aim of helping clinicians and scientists improve clinical care of children with neuromuscular disease. There were also sessions focused on caring for a child with a chronic disease, increasing independence of adolescents with chronic disease as well as a break out session just for teenagers with SMA.”

Angela McGonigal, whose son Owen is affected by SMA, thought that the day had many great aspects including the health information shared, and the opportunity to establish networks and bonds with others in the same situation.

“Brian Weaver is a Respiratory Therapist who worked closely with Dr. Bach.  He is a strong proponent of cough assist machines for SMA patients.  He advised that when SMA kids are sick, they can utilize the cough assist machine every 3 hours during the day,” remembers Angela. “He recommends avoiding oxygen therapy as it masks ventilation issues such as secretions.  He encourages chest therapy and recommends having the torso higher than the head to facilitate drainage.”

Muscular dystrophy Canada’s very own Services Specialist for Ontario and Nunavut, Karen Dunbar’s information was also very helpful. “She provided an overview of the home renovation funding and the equipment program and the event was well attended by families, doctors, therapists, nurses, social workers and others involved in SMA patient care.  It was a great opportunity to learn, reflect and connect,” says Angela.

Dr. Amin also heard high praises from attendees, “One participant told me they felt ‘informed, inspired and connected.’ At the end of the day, we were also asked, ‘When are you going to have this next year?’”

Everyone who attended, from clients, parents, caregivers and medical professionals, all learned new things and made new connections. Dr. Amin had one particular memory stand out: “At the end of the day, we had a panel discussion led by adolescents and young adults with Spinal Muscular Atrophy. The audience was able to ask these individuals questions, and the responses were insightful and inspiring.  One young adult with SMA was asked, ‘What is the one thing you would want to change in life if you were able?’ Her response was to be able to change the way people looked at her in a wheelchair. She hoped for a world with an increasing acceptance of children who were different. Her words resonated with everybody who was in the room. As healthcare providers, this is one goal we need to help work towards achieving for these children.”

“We hope that the attendees came away with an increase in knowledge regarding the respiratory management and complications of a child with SMA,” says Dr. Amin. “We also wanted to increase the awareness of the effect of having a child with SMA has on the family, specifically the social and psychosocial consequences of the condition at life’s many transition points. We also hope that we were able to break down barriers and foster open discussions between health care professionals, caregivers, and children both at the event and in the future. Of paramount importance is our hope that we were able to promote a support network for families with children with SMA. We also wanted to fully inform families about the registry as well as other research in SMA in order that they may participate in research if they wish to do so.”

The full house and outstanding feedback from attendees highlights the importance of partnerships between hospitals, care facilities, research centres and not-for-profit organizations, and why sharing information and resources – not only from a research standpoint, but also in terms of services – is so vital to the care of those with neuromuscular disorders. “The Hospital for Sick Children, Holland Bloorview Rehabilitation Hospital, and Muscular Dystrophy Canada all strive to provide better patient centered care to the children and their families,” Dr. Amin explains. “Strong partnerships are essential across hospitals and NFPs to facilitate transitions from hospital to home as well as to develop and support these families in their communities,” says Dr. Amin.  “For example, the funding support of Muscular Dystrophy Canada towards respiratory technology facilitates the purchase of mechanical insufflator-exsufflators (cough assists) for our patients.  This improves their overall pulmonary health and helps to keep these children in school and out of hospital.”

Of course, that is everyone’s ultimate goal.

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The Spinal Muscular Atrophy Family Education Day was hosted by SickKids Hospital and Holland Bloorview Rehabilitation Hospital. This event was made possible by the generous support of Muscular Dystrophy Canada, the SickKids Foundation, Fight SMA Canada and Lifetronics.

For more information on SMA and other neuromuscular disorders, please click here. To learn more about programs offered by Muscular Dystrophy Canada, please contact a Services Specialist in your region.

To learn more about the Canadian Neuromuscular Disease Registry, click here.

 

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Partenariats en action

cliniccropL’année dernière, une nouvelle initiative éducationnelle s’est tenue grâce au soutien de Dystrophie musculaire Canada. En collaboration avec deux hôpitaux pour enfants de Toronto, le Holland Bloorview et le SickKids, cette initiative a pris la forme d’une journée familiale pour les enfants, jeunes adultes et adultes atteints d’amyotrophie spinale (AS) ainsi que pour leurs parents et aidants. La Dre Reshma Amin explique comment l’idée de cette journée a vu le jour.

« Je travaille à la clinique de soins respiratoires complexes du Hospital for Sick Children avec le Dr Theo Moraes, Cathy Daniels, infirmière praticienne, Faiza Syed, inhalothérapeute, et Ellie Lathrop, travailleuse sociale. Notre équipe assure le suivi d’enfants qui dépendent des technologies respiratoires telles que les appareils à deux niveaux de pression positive et la ventilation invasive. Plusieurs de ces enfants ont une maladie neuromusculaire comme l’amyotrophie spinale et sont souvent suivis en même temps au Holland Bloorview Rehabilitation Hospital pour leurs soins neuromusculaires par la Dre Laura McAdam, coprésidente de cet événement, et son équipe. Un jour, à la clinique, pendant que nous discutions de la transition vers les soins de santé pour adultes, un adolescent a mentionné qu’il voulait aller à l’université et qu’il aimerait bien pouvoir parler à un autre jeune adulte atteint d’AS déjà à l’université. Ceci nous a fait penser qu’il serait intéressant d’organiser une activité familiale éducationnelle pour faciliter les échanges entre enfants atteints d’AS et leur permettre de parler de questions touchant « la vraie vie ».

L’activité a fait salle comble, avec une centaine de participants, la plupart de la région du Grand Toronto mais aussi de Thunder Bay (ON) et du Nouveau-Brunswick. L’objectif de la journée? « Sensibiliser davantage le milieu à l’amyotrophie spinale et mieux informer les aidants et les enfants atteints d’AS », explique la Dre Amin. « Nous voulions plus particulièrement rehausser les connaissances des familles et des enfants en ce qui concerne les impacts médicaux et psychosociaux de la maladie. Nous voulions aussi offrir un lieu de rencontre permettant de favoriser des relations de soutien entre les familles touchées. Enfin, nous voulions que les enfants et leur famille soit informés des recherches scientifiques en cours sur l’amyotrophie spinale. »

La journée a consisté à écouter de nombreux conférenciers, à participer à des discussions et à réseauter.

« Nos conférenciers sont reconnus internationalement pour leur travail dans le domaine de l’amyotrophie spinale. Le Dr John Bach, professeur de physiatrie et de réadaptation à l’University Hospital de Newark, au New Jersey, qui possède une expérience sans pareille des personnes atteintes d’AS, a fait un survol de la gestion respiratoire de l’AS qui avait de quoi faire réfléchir. Brian Weaver, MS, RRT-NPS, RPFT, inhalothérapeute et chef de département du Kimble Medical Center de Newark au New Jersey, a présenté une revue pratique des complications respiratoires et du rôle des technologies respiratoires pour les enfants atteints d’AS. Le Dr Alex Mackenzie, scientifique et clinicien du Children’s Hospital of Eastern Ontario, a offert une revue de haut niveau de la recherche sur l’amyotrophie spinale et des essais cliniques pour enfants qui en sont atteints, présentement en cours et prévus. Il y avait beaucoup d’autres conférenciers, dont Tracy Lacey, président de Fight SMA Canada, son mari Shawn et leur fille Tori, atteinte d’AS, qui ont donné un aperçu pratique de la vie avec un enfant atteint d’AS, depuis les modifications requises au domicile jusqu’aux questions touchant la scolarisation. Le Dr Adam Rapoport, directeur médical de l’équipe de soins pédiatriques avancés du SickKids Hospital a renseigné les familles sur les services de soutien que l’hôpital offre aux enfants et aux familles. Karen Dunbar, spécialiste des services de Dystrophie musculaire Canada pour l’Ontario et le Nunavut, a offert un survol pragmatique et informatif des services et mesures de soutien que son organisme offre aux enfants et familles touchées par l’AS. La Dr Laura McAdam a parlé pour sa part du Canadian Neuromuscular Disease Registry, un registre de patients établi en vue d’aider les cliniciens et les scientifiques à améliorer les soins cliniques des enfants atteints de maladies neuromusculaires. Il y a aussi eu des sessions sur la façon de s’occuper d’un enfant atteint d’une maladie chronique, d’améliorer l’autonomie des adolescents qui ont une maladie chronique ainsi qu’un atelier réservé aux adolescents ayant l’AS. »

De l’avis d’Angela McGonigal, dont le fils, Owen, a l’amyotrophie spinale, la journée comportait de nombreux aspects intéressants, notamment le partage d’information sur la santé et la possibilité de réseauter avec des gens qui sont dans la même situation.

« Brian Weaver est un inhalothérapeute qui a travaillé étroitement avec le Dr Bach. C’est un ardent défenseur du recours aux appareils d’assistance à la toux pour les patients atteints d’AS. Lorsqu’un enfant AS est malade, il conseille d’utiliser l’appareil d’assistance à la toux aux trois heures pendant la journée, rappelle Angela. Il recommande aussi d’éviter l’oxygénothérapie puisqu’elle masque les problèmes de ventilation tels que les sécrétions. Il encourage la physiothérapie respiratoire et recommande de positionner le torse plus haut que la tête pour faciliter le drainage. »

L’information fournie par Karen Dunbar, la spécialiste des services de Dystrophie musculaire Canada pour l’Ontario et le Nunavut, a aussi été très utile. « Elle a parlé du financement disponible pour l’adaptation du domicile et du programme d’aides techniques. Les familles, médecins, thérapeutes, infirmières, travailleurs sociaux et autres personnes concernées par le suivi des patients AS étaient tous fort bien représentés. Ce fut une excellente occasion de s’informer, de réfléchir et de réseauter », ajoute Mme McGonigal.

La Dre Amin a aussi entendu des commentaires très positifs chez les participants. « L’un d’eux m’a dit qu’il se sentait informé, inspiré et connecté. À la fin de la journée, on nous a aussi demandé quand se tiendrait cette activité l’année prochaine. »

Clients, parents, aidants et professionnels médicaux, tous les participants ont appris quelque chose de neuf et rencontré des gens intéressants. Un événement a plus particulièrement marqué la Dre Amin  « C’était à la fin de la journée, lors d’un débat réunissant un panel d’adolescents et de jeunes adultes atteints d’amyotrophie spinale. Le public pouvait leur poser des questions et leurs réponses étaient éclairées et inspirantes. On a demandé à une jeune adulte atteinte Quelle est la chose que vous voudriez changer dans votre vie si vous le pouviez? Sa réponse : changer la façon dont les gens la regardent dans son fauteuil roulant. Elle rêve d’un monde où les enfants qui sont différents seraient mieux acceptés. Ses mots ont trouvé un écho chez tous ceux qui étaient présents. En tant que professionnel de la santé, voilà un objectif que nous devons tous contribuer à réaliser, pour le bien de ces enfants. »

« Nous espérons que les participants sont repartis avec de meilleures connaissances au sujet des soins et des complications respiratoires chez les enfants atteints d’amyotrophie spinale », ajoute la Dre Amin. « Nous voulions aussi les sensibiliser davantage à l’impact qu’a un enfant AS sur la famille, et plus particulièrement aux conséquences sociales et psychosociales de la maladie au moment des différentes transitions qui surviennent au cours d’une vie. Nous espérons aussi avoir favorisé une discussion plus ouverte entre les professionnels de la santé, les aidants et les enfants, lors de cette rencontre mais aussi pour l’avenir. Surtout, nous espérons avoir encouragé l’établissement et le renforcement d’un réseau de soutien pour les familles des enfants atteints d’AS. Enfin, nous voulions fournir aux familles une information complète sur le registre et sur d’autres recherches sur la maladie afin qu’ils puissent choisir d’y participer ou non en toute connaissance de cause. »

La très forte participation et les commentaires unanimement positifs de cette journée soulignent l’importance de la collaboration entre les hôpitaux, les centres de soins, les centres de recherche et les organismes sans but lucratif et illustre l’importance pour le suivi des personnes qui vivent avec une maladie neuromusculaire de la mise en commun de l’information et des ressources, non seulement pour ce qui est de la recherche mais aussi en termes de services. « Qu’il s’agisse du Hospital for Sick Children, du Holland Bloorview Rehabilitation Hospital ou de Dystrophie musculaire Canada, nous nous efforçons tous de fournir aux enfants et à leur famille de meilleurs soins centrés sur les patients », explique la Dre Amin. « Il est essentiels que des partenariats solides soient établis entre tous les hôpitaux et les OSBL pour faciliter les transitions de l’hôpital à la maison ainsi que pour soutenir ces familles dans leur milieu propre », ajoute la Dre Amin. « Ainsi, le soutien financier de Dystrophie musculaire Canada pour les technologies respiratoires facilite l’acquisition d’appareils d’assistance mécanique à la toux pour nos patients, ce qui améliore leur santé pulmonaire dans son ensemble et contribue à garder ces enfants à l’école et hors de l’hôpital. »

Et bien sûr, c’est là l’objectif ultime pour tous.

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Le Spinal Muscular Atrophy Family Education Day a été organisé conjointement par le SickKids Hospital et le Holland Bloorview Rehabilitation Hospital. Cette journée a été rendue possible par le généreux soutien de Dystrophie musculaire Canada, la SickKids Foundation, Fight SMA Canada et Lifetronics.

Pour plus d’information sur l’amyotrophie spinale et sur les autres maladies neuromusculaires, cliquez ici. Pour en savoir plus sur les programmes qu’offre Dystrophie musculaire Canada, nous vous invitons à contacter notre spécialiste des services de votre région.

Filling Boots in Sudbury

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Fire Fighters organize events year-round and help raise funds in support of those affected by neuromuscular disorders.   The most successful fundraiser is the Fill the Boot.  Fire Fighters hold out their boots in parking lots, in front of stores and even on the streets and ask the generous public if they would like to voluntarily make a donation.  The Sudbury Professional Fire Fighters Association Local 527 has been involved with Muscular Dystrophy Canada since 1972, and to date have raised $471,071.74! This year, with the help of local resident Kathy, Sudbury PFFA raised $34,120.20!

Kathy’s family is affected by neuromuscular disorders so she is very passionate about the great work Fire Fighters do for those affected.  She saves her money so she can visit their annual Fill the Boot and give a generous donation.  As a way to thank her, the Fire Fighters from Local 527 invited Kathy to spend an afternoon with them in their main station in late November.

IMG_2322Kathy says, “From the extensive tour of the station, to the company of such thoughtful individuals who give so freely to a cause they believe in, to the honour of breaking bread with such special people, to my privileged ride on the most mammoth piece of equipment, I’ve ever ridden in, to the totally unexpected gift of the magnificent flowers and the very touching greeting card– my word, how special you all made this woman feel yesterday!

I was particularly delighted to see that one of the pictures captured precisely the little girl thrill I felt to find myself on the hook and ladder!

My home wafts with the delightful smell of those glorious flowers and when I close my eyes, I smile and remember all those handsome faces with whom I shared time on November 28th.

Scott, please ensure that your colleagues in SPFFA Local 527 know that they qualify as heroes because they care so deeply about the community they serve. It was a pleasure to meet so many of the Fire Fighters who help Fill the Boot.  I trust that I communicated my deep gratitude to all present for their commitment to finding a cure to those neuromuscular disorders, including the variety that affects my family. Hopefully, the members now have a personal ‘face’ to attach to their efforts!

We have a target to beat next September… I’ve already begun saving!”

IMG_2316Scott Roper, the Muscular Dystrophy Canada Chairperson for Sudbury PFFA responded to Kathy by saying, “­­­­­­ You are most welcome and it was nice to have finally met you.  Thursday was just a small token to what you have given back to this community over the last few years and for that, we are thankful for it.  I was saying to my wife the other night, seeing you on Thursday and watching how happy you were, makes my decision 15 years ago to become a Fire Fighter, worth every penny and heartache to achieve my goal.  Helping out in the community is the most beneficial part of our job and I wouldn’t trade it for anything.

Thanks again and look forward to seeing you next year, at the Fill the Boot.  Maybe you could collect some money with us for a few minutes.”

Thank you to Kathy and the Fire Fighters from Sudbury PFFA Local 527 for sharing your amazing experience with us! We are grateful for your generosity and to the people of Sudbury who donated to the Fill the Boot campaign.

 

Then and Now

stephen rysen-2012 walk for md

Living with Muscular Dystrophy has to involve a positive attitude. There are lots of obstacles with Muscular Dystrophy that include the loss of strength and mobility, loss of friends with Muscular Dystrophy, fear and depression. But there are ways to overcome this by becoming proactive and helping others with Muscular Dystrophy. Muscular Dystrophy Canada has provided me the opportunity to become proactive by allowing my participation in their fundraising events and Muscular Dystrophy Firefighter Conventions. Therefore it has provided positive energy for me and allowed my dream to come true as a public speaker.

Stephen Rysen and Tina Rysen- 1995 FF ConferenceI started speaking at 12 when I became a Muscular Dystrophy Canada Campaign Assistant which involved an interview for the annual Labour Day telethon to raise funds for Muscular Dystrophy. Although it did not appear on television it opened the doors for more opportunities for involvement with Muscular Dystrophy Canada. I participated in my first Muscular Dystrophy Firefighter Convention and did my first ever speech. The speech is one I will never forget. I was on stage after watching a comedian, which caused me laugh during my speech when I lost track from the notes I was reading from. But I was able to improvise and finish my speech. Furthermore I rebounded with a speech at a charity golf tournament for Muscular Dystrophy Canada to say thanks to the people for attending and the people that made it happen.  I have done four other presentations at Muscular Dystrophy Firefighter Conventions which included 2 speeches for the Muscular Dystrophy Canada career program named Bridges to the Future and 2 speeches about life with Muscular Dystrophy. The two speeches about my life story with Muscular Dystrophy have been successful that I have gone to the Justice Institute of British Columbia to talk to future firefighters about the firefighters’ tradition of fundraising for Muscular Dystrophy Canada. Speaking at an early age has given me the confidence to still speak at conferences and speaking engagements today.

I have given back to Muscular Dystrophy Canada: by fundraising, by visiting and advertising boot drives, by shooting a client video, by participating in a Shell Buzzy fundraiser and doing a ceremonial puck drop between Ryan Walter and Ron Duguay at a celebrity pro-am charity hockey game. Muscular Dystrophy Canada is a helpful foundation that I am thankful for because of their efforts to fight this disease. But I’m also here to help others live Muscular Dystrophy. Therefore I assist Muscular Dystrophy Canada by attracting more donations by providing awareness through fundraising and public speaking.

stephen rysen-2011 walk for mdWhen fundraising or going to speaking engagements it gives me a chance to provide uplifting positive energy onto others. Therefore people want to know where the money is going and how to receive more donations. People with Muscular Dystrophy need positive energy to shine over the dark cloud. Talking about the negative parts of Muscular Dystrophy provides me the strength to provide positive energy to become proactive by attracting others to help people with Muscular Dystrophy. Furthermore getting money donated to this organization can provide abilities with equipment, career counseling, support groups, support programs and provide much needed research programs and trials. Being able to talk to people makes me fortunate to continue my dream of speaking and provides me positive energy to be thankful to be alive because of people being proactive against Muscular Dystrophy.

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Stephen Rysen is a 30 year old with Duchenne muscular dystrophy. He has been volunteering with Muscular Dystrophy Canada since 1995, and continues to be spread awareness today by getting involved in the fire department, speaking to new fire fighter recruits, speaking at fire fighter conferences, and fundraising in the Walk for Muscular Dystrophy. Stephen has been named the 2014 Vancouver Safeway Walk for Muscular Dystrophy Ambassador. His positive attitude continues to inspire everyone around him. 

Register for a Walk near you today!

Learn to Make Yourself Happy

TAAZ-makeover1Happiness. You can’t fight the feeling when you feel it, and you can’t hide it when you crave what it used to be. I thought certain aspects of life might tear me down – especially with what others might think – but I have never allowed myself to be defined by what other people had to say about who I was. It was through lessons, and challenging myself that got me to where I am now. I learned to put myself first. Yes, sometimes there are individuals who see my flaws, and perceive them as something they don’t want to deal with –it’s just easier that way. Unfortunately, I cannot walk away from myself, and I’m not sure I ever would. I am able to accept my weaknesses, and nobody can use that against me. I know who I am, and who I am not. Yes, we all want to be accepted, and loved. But it has to start with yourself.

I want you to be happy. I want you to not rush getting a mortgage, getting married, or growing up. When I was younger, all I wanted was to grow up. I wanted to wear make-up, and drive a car and feel the wind blowing in my hair. Now, I’d trade everything to start over, and appreciate those days spent making snow forts, and eating popsicles. You can’t go back, but you can step back. When I stepped back, I had a chance to see what I could not see before. I saw what was worth fighting for, I felt my life get brighter, and at the same time I felt my heart become emptier. I found kindness where I did not even know it existed. So have patience in today, in tomorrow. Learn to love yourself, even within in the things you cannot change.

Being happy with yourself is something you have to learn. It’s something that will not happen overnight. Waiting for my diagnosis, there were many days where I would distract myself with school, friends, family- anything so I didn’t have to think about it. Behind it all, I wasn’t happy. Which is why I held back on so many things; things I now regret. Somehow, I knew in my heart, I could not love someone unless I loved myself first. Nobody was going to fill the gap for me. I had to do it for myself. Now, after years (yes, years) of growing and learning, I am at peace with myself. I found happiness not by what I gained, but by doing what I was willing to endure.

I hope you find happiness, and I hope it starts with yourself. I hope you don’t settle just because you think it’s what you’re supposed to be doing. Most importantly, I hope you never lose sight of the most important things in life, the things money can’t buy. Take time to reflect on life. Take time to take care of yourself. You deserve it. If you want to start over, every day will bring you a new chance. Don’t worry about what’s going on around you. You’re not meant to follow the crowd in society, you’re not meant to lose yourself out there. Nobody who has ever achieved anything great has followed the book or the crowd. Everything can be taken from you: your possessions; your health; your rights. But nobody can take away what is in your heart, your thoughts, and the freedom to use both. To be happy with yourself will not take a day. It took me lots of little steps to be able to reach where I am now. Not everything will be easy and perhaps far from what you expected, but you must choose to be grateful for all that you have. Happiness comes from knowing that this is your only chance to live this life, no matter how it turns out.

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Ivana was born in Sanski Most, Bosnia & Herzegovina, but moved to Canada at the age of three. She was diagnosed with LGMD a few years ago, and it has forever changed her life. She is a regular contributor, and her blogs will be everything she has learned along the way, and what she continues to learn today.

2014 Walk for Muscular Dystrophy Contest highlights Muscular Dystrophy Canada’s 60 Years of Progress

The 2014 Walk for Muscular Dystrophy season is fast-approaching so it’s time to get registered and kick-start your fundraising efforts. To recognize Muscular Dystrophy Canada’s 60th year, 60 Walk for Muscular Dystrophy events will be taking place across the country. In honour of the occasion, we are holding a new contest!

ipad2Register and raise $60 online at least 60 days before your local Walk for Muscular Dystrophy event and you will be entered for a chance to win an iPad!

Some Ontario Walk for Muscular Dystrophy events are coming up quickly! Raise your $60 by February 26th for the NEW Guelph & Area event, by February 27th for the Windsor Walk and by March 4th for the Toronto Walk to be entered for a chance to win! Be sure to register today!

If you have any questions about the contest, feel free to get in touch with us a walkformusculardystrophy.on@muscle.ca or 1-866-687-2538 ext 131.

We look forward to seeing you at this year’s Walk for Muscular Dystrophy events!

A Family Connection

md2[1]La version française suit.

For one Muscular Dystrophy Canada family, the connection to the organization goes back almost 60 years. Ken Killen was a career Fire Fighter with the Kingston Fire Department, and began volunteering with the Muscular Dystrophy Association of Canada in the late 1950s, a connection that carries on today through his daughter Debra Chiabai, and grandchildren Alex and Kate.

“My father was a career Fire Fighter in Kingston. He often had part time jobs in his off hours (bus driver, photographer, taxi driver) since in the early years it was not a particularly well paid job. Even though he was very busy with his full and part time work, he always made time to volunteer. The Fire Fighter charity of choice, then as now, was the Muscular Dystrophy Association of Canada,” remembers Debra. “I know he had a leadership role which I think would now be called Fire Fighter Advisor, but I’m not sure if that was just for his department or if it was more regional. He was responsible for a number of years for running the Kingston Telethon Centre and he also made frequent trips to the televised location in Watertown, New York to speak on behalf of Fire Fighters, co-host and to receive and deliver cheques. He would also take co-lead/coordinate the local canister drive and other events like McHappy Day. He also dressed up as a clown for fundraising events and to participate in the annual Kingston Santa Claus parade.”

md1[1]Debra would help out her dad with his volunteering duties when she could, “I loved to count the change from canisters. The mountain of change on the dining room table always looked huge and it was fun to see it slowly turn into rolls of coins. I became a really proficient roller of coins.”

“I also remember helping out with collecting coins at McHappy Day. I was quite young but I remember being struck by how drawn he was, in particular, to interacting with the children with muscular dystrophy. He was a natural both in knowing best how to help them while also giving them respect and a sense of dignity. I also remember answering the phones at the telethon at quite a young age and being very proud that MY Dad was on TV or running operations at the telethon centre.”

Her close interaction volunteering with her dad left a big impression, “I don’t really remember him specifically teaching me about muscular dystrophy or the Muscular Dystrophy Association of Canada, but I gained a lot of impressions and attitudes about volunteering, and respect for people with disabilities through watching him interact with both people with disabilities and his peers. I was always aware of his leadership role and his mentoring of younger firefighters to get them involved in the cause. He also was never afraid to ask people for donations or services to help the cause.”

.facebook_291828501Debra took what she learned from her father with her through her life, volunteering at Telethons, and getting involved with other charities and mentoring programs when she moved away from Kingston. When Debra and her husband Lawrence welcomed twins Alex and Kate in 2000, she did not know that the Muscular Dystrophy Association of Canada was going to once again play a role in their life.

In 2003, Debra’s son Alex was diagnosed with Duchenne Muscular Dystrophy. Within two months of the diagnosis, Debra began volunteering with the Ottawa Chapter. “After Alex was diagnosed I knew two things: I needed information and I needed to do something to help the cause. Partially it was a way to network and get information, but I also knew I needed to get involved in finding a cure and in helping others.  It had to mean more than just what was happening to our family.”

As she became more involved in the Chapter, Debra realized that there were leadership opportunities within the organization. “I was very interested in the Medical and Scientific Advisory Committee so I started there, and then I was approached to be Ontario Chapter Advisor, and then National Chapter Advisor. I am not sure I would have put myself forward to be nominated to the Board because I did not feel particularly qualified, but now that I am on the Board I really enjoy being involved in the process of ensuring we do the best job everyday of delivering on our mission and vision. I also feel privileged to work with my fellow board members – a group of amazing and dedicated people.”

As the National Chapter Advisor, Debra chairs the Chapter Advisory Committee and reports back to the Board. She is also a member of the Executive Committee, representing volunteers and chapters, and a member of the Medical and Scientific Advisory Committee. “In all these roles, I attend meetings and conferences and provide support to volunteers and support the success of the organization in any way possible. I also attend international and national conferences as a volunteer representative of Muscular Dystrophy Canada. In the past two years I have been involved in meetings with the advocacy activities and conferences with the Canadian Organization for Rare Disorders, a national meeting for paediatric endocrinology, a national meeting for neuromuscular researchers, and the Parent Project Muscular Dystrophy annual conference.”

What does Alex think of the family’s long-standing relationship with Muscular Dystrophy Canada?

IMG1830“I think Alex finds it comforting that it has been a part of our family for a very long time. My father died when Alex was a year old which was 1 ½ years before Alex was diagnosed. I often say that if my father was still alive he would be one of Alex’s champions and an avid volunteer for MDC. I think Alex finds comfort in knowing he has the organization behind him and supporting him. As a younger child he was eager to participate in awareness and media events. Now that he is older, he is a bit shyer about appearing publically.”

“Alex’s twin sister Kate has become a great fundraiser and volunteer for MDC because of her brother. She heads up our family and friends team each year for the Walk for Muscular Dystrophy and proudly displays our top team plaque on the wall of her room. She loves to volunteer and really sees what a difference it can make in the lives of those with neuromuscular disorders. I think she also likes volunteering like Grandpa did.”

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Une tradition familiale

md2[1]Pour une famille de Dystrophie musculaire Canada, le lien avec l’organisation remonte à près de 60 ans. Ken Killen, un pompier du Service d’incendie de Kingston, a commencé à être bénévole pour l’Association canadienne de la dystrophie musculaire vers la fin des années 1950, une tradition que perpétue encore aujourd’hui sa fille, Debra Chiabai, et ses petits-enfants, Alex et Kate.

« Mon père était pompier à Kingston. Il a souvent occupé des emplois à temps partiel dans ses heures libres (chauffeur d’autobus, photographe, chauffeur de taxi). Il faut se rappeler que dans ces années-là, être pompier n’était pas particulièrement bien payé. Même si ses emplois à temps plein et à temps partiel le tenaient très occupé, il trouvait toujours le temps de faire du bénévolat. L’organisme caritatif privilégié par les pompiers, à cette époque comme aujourd’hui, était l’Association canadienne de la dystrophie musculaire, relate Debra. Je sais qu’il occupait un poste de responsabilité, ce qui équivaut aujourd’hui au rôle de représentant des pompiers, mais je ne suis pas certaine s’il était représentant de son service d’incendie ou des pompiers de sa région. Pendant plusieurs années, il a été chargé du centre d’appels de Kingston pour le Téléthon Jerry Lewis et il se rendait souvent à Watertown, New York, d’où était télévisé le téléthon, pour parler au nom des pompiers, agir comme animateur et recevoir et remettre des chèques. Il codirigeait aussi la campagne des tirelires de Kingston et d’autres activités comme le Grand McDon. Enfin, il se déguisait en clown lors d’activités-bénéfice et pour participer au défilé annuel du Père Noël de Kingston. »

md1[1]Debra aidait son père dans ses activités bénévoles chaque fois qu’elle le pouvait. « J’aimais bien compter la monnaie dans les tirelires. La montagne de monnaie sur la table de la salle à manger avait toujours l’air énorme et c’était amusant de la voir se transformer lentement en rouleaux. Je suis devenue très efficace à rouler des sous. »

« Je me rappelle aussi d’avoir aidé mon père à ramasser des dons au Grand McDon. J’étais très jeune mais je me rappelle avoir été frappée de voir sa façon d’interagir avec les gens, mais surtout avec les enfants atteints de dystrophie musculaire. Il avait vraiment un don, tant pour savoir la meilleure façon de les aider que pour leur donner du respect et un sens de la dignité. Je me rappelle aussi avoir répondu au téléphone lors du téléthon alors que j’étais encore très jeune. J’étais très fière que MON père passe à la télé et dirige les opérations au centre d’appels du téléthon. »

Être associée de près aux activités bénévoles de son père a fortement impressionné Debra : « Je ne me rappelle pas vraiment que mon père ait voulu m’enseigner quoi que ce soit sur la dystrophie musculaire ou sur l’Association canadienne de la dystrophie musculaire, mais j’ai beaucoup appris sur le bénévolat et le respect des personnes handicapées en le voyant agir, tant avec les personnes atteintes qu’avec ses collègues. J’étais toujours consciente de son rôle de leader et de mentor auprès des pompiers plus jeunes pour les inciter à s’impliquer pour la cause. Il n’avait jamais peur non plus de solliciter des dons ou des services pour aider la cause. »

Debra a conservé les leçons apprises de son père toute sa vie, devenant bénévole pour les téléthons et s’impliquant auprès d’autres organismes caritatifs et programmes de mentorat après avoir quitté Kingston. Lorsqu’en 2000, Debra et son mari, Lawrence, eurent leurs jumeaux, Alex et Kate, elle ne se doutait pas que l’Association canadienne de la dystrophie musculaire allait à nouveau jouer un rôle dans sa vie.

.facebook_291828501En 2003, Alex recevait un diagnostic de dystrophie musculaire de Duchenne. Deux mois plus tard, Debra devenait bénévole à la section locale d’Ottawa. « Après le diagnostic d’Alex, je savais deux choses : j’avais besoin d’information et j’avais besoin de faire quelque chose pour aider la cause. En partie, c’était une façon pour moi de réseauter et d’avoir de l’information, mais je savais aussi que j’avais besoin de m’impliquer dans la lutte aux maladies neuromusculaires et d’aider d’autres personnes. Il fallait que ce qui arrivait à ma famille ait un sens plus large. »

À mesure qu’elle s’impliquait davantage dans les activités de la section locale, Debra réalisait qu’il y avait au sein de l’organisme de nombreuses fonctions de responsabilité pour des bénévoles. « J’étais très intéressée par le Comité consultatif scientifique et médical, alors c’est là que j’ai commencé. Et puis on m’a demandé de devenir représentante des sections locales de l’Ontario, puis représentante nationale. Je ne suis pas certaine que j’aurais moi-même osé proposer ma candidature au conseil, parce que je ne me sentais pas particulièrement qualifiée, mais à présent que je siège au conseil, j’aime beaucoup contribuer à réaliser chaque jour notre mission et notre vision. Je me considère aussi privilégiée de travailler avec mes collègues du conseil d’administration, un groupe de personnes extraordinairement engagées. »

À titre de représentante nationale des sections locales, Debra préside le Comité consultatif des relations avec les sections locales et fait rapport des activités de celui-ci au conseil. Elle fait aussi partie du comité exécutif où elle représente les bénévoles et les sections locales et est membre du Comité consultatif scientifique et médical. « Dans tous ces rôles, je participe à des rencontres et des conférences et soutient les bénévoles et le succès de l’organisation de toutes les façons possibles. Je participe aussi aux conférences internationales et nationales à titre de représentante bénévole de Dystrophie musculaire Canada. Au cours des deux dernières années, j’ai participé aux réunions et conférences sur la défense des droits et l’action sociale d’une organisation canadienne pour les maladies rares, à une rencontre nationale d’endocrinologie pédiatrique, à une rencontre de chercheurs du domaine des maladies neuromusculaires, et à la conférence annuelle du PPMD (Parent Project Muscular Dystrophy, États-Unis.) »

Que pense Alex de la relation de longue date de sa famille avec Dystrophie musculaire Canada?

IMG1830« Je crois qu’il est réconfortant pour Alex que cela fasse partie de notre famille depuis si longtemps. Mon père est décédé lorsqu’Alex avait un an, c’est-à-dire un an et demi avant qu’il ne reçoive son diagnostic. Je dis souvent que si mon père était encore vivant, il serait l’un des plus grands champions d’Alex et un bénévole chevronné de DMC. Je crois qu’il est aussi réconfortant pour Alex de savoir que l’organisation est derrière lui et qu’elle l’appuie. Plus jeune, il était toujours prêt à participer aux campagnes de sensibilisation et aux événements média. À présent qu’il est plus vieux, il est un peu plus gêné de se montrer en public. »

« Kate, la sœur jumelle d’Alex, est devenue une bénévole accomplie et recueille des fonds pour DMC. C’est elle qui dirige chaque année notre équipe de parents et d’amis pour la Dystromarche et c’est sur le mur de sa chambre qu’est affichée notre plaque de « Meilleure équipe ». Elle adore être bénévole et voir les changements concrets que son implication apporte à la vie des personnes qui ont une maladie neuromusculaire. Je crois qu’elle aime aussi savoir qu’elle suit dans les pas de son grand-père. »