Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. On this episode, Kristy Dickinson and Brenda Agnew are joined by Dana Geall, a mother of five, including triplets with Cerebral Palsy. Dana is also the author of See Me For Me, a colourful picture book that introduces children to people with disabilities, and can help parents and teachers start important dialogues about empathy and inclusion.

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Simply Unbreakable

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Simply Unbreakable is where ideas are shared and conversations about navigating the healthcare system are had. The ideas shared are those of the individuals and should not be interpreted as medical advice.

Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. In honour of Rare Disease Day, Kristy Dickinson and Brenda Agnew reflect on their own experiences navigating the world through the eyes of a patient or caregiver. They touch on some of the milestones and challenges they’ve faced over the years, including the diagnosis process, self-limiting beliefs, and participating in sports and activities.

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Tweetables and quotes:

“Individually we might be rare, but together we are strong."

Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are thrilled to be joined by Melanie Birch for today’s episode, a medical mama and advocate for her daughter Ella, who was diagnosed with Rett Syndrome at a very young age. 

Key Takeaways:

[1:26] Melanie shares her life when discovering her daughter, Ella, had Rett Syndrome.

[6:28] Brenda talks about the case of her son using a device to communicate.

[10:01] Caring for a child with a rare disease is a full-time job.

[14:24] Brenda talks about how difficult is for a parent when they have to choose where they are going to put their focus on in regards to the development of their child.

[20:11] Melanie shares her experience realizing she did not have the capacity to carry on with all the activities that she was recommended to do with her daughter.

[23:16] Melanie and Brenda talk about how they incorporated stimulating activities into everyday life.

[29:40] How did Melanie process Ella’s diagnosis? It was completely scary and devastating at first.

[36:07] Melanie shares how she found out more about Rett Syndrome.

[41:30] Melanie shares a beautiful family memory and an amazing milestone achieved by Ella.

[49:20] Melanie talks about the importance of sharing stories.

[53:16] Melanie and a friend came up with the idea of making up a list of 5 things their children have accomplished in a month that they were not able to achieve before.

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Kristy Wolfe Photography

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Simply Unbreakable is where ideas are shared and conversations about navigating the healthcare system are had. The ideas shared are those of the individuals and should not be interpreted as medical advice.

Tweetables and quotes:

“Caring for a child with a rare disease is a full-time job.”

“As a parent with a child with special needs you reach that point where you realize you cannot do it all, it is just too much on parents.”

“It is amazingly beautiful to celebrate the small achievements.”

Description: Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are accompanied by Sarah VanNetten, who is a wife, a mom, and the author of Steady as We Go!: COVID, Chicken, and a Miracle.

In today’s episode, Sarah shares how she unexpectedly became an advocate not only for her husband but for the healthcare system and everybody dedicating their time and efforts working for everyone affected by the pandemic.

Key Takeaways:

[1:10] Sarah shares how her life changed when her husband was diagnosed with COVID.

[3:33] What did Sarah’s advocacy look like?

[5:05] Sarah also became an advocate for the health care staff and for vaccine awareness.

[7:34] Brenda talks about her position as an advocate for her son.

[11:22] COVID advocacy has been different from any other kind of advocacy.

[14:28] Firefighters and police received more understanding and gratitude after 911, now people are recognizing health care heroes for their efforts during the pandemic.

[17:30] Do you know the cost of medical care? People should get a bill even if they don’t have to pay it, just to be more aware and thankful for the treatment they are receiving.

[22:21] Sarah wanted everyone to know who her husband was when he was at the hospital.

[25:30] Kristy shares how humanizing patients is needed.

[29:45] Gratitude and appreciation matter.

[30:52] Sarah talks about the “lonely farm-wife season” and the resulting perspective shifts.

[33:47] You need sadness to realize what happiness is.

[34:45] What happens when COVID patients come off?

[35:56] COVID does not stop the day you get out of the ICU, Sarah shares her husband’s rehabilitation.

[44:05] Finding purpose makes any experience worth living.

[45:38] Where does Sarah see her purpose now?

[53:57] Sarah realized she was stronger than she thought.

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Simply Unbreakable

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Simply Unbreakable is where ideas are shared and conversations about navigating the healthcare system are had. The ideas shared are those of the individuals and should not be interpreted as medical advice

Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew welcome their dear friend Liz DaPonte to today’s episode to be the moderator. Kristy and Brenda share a reflection about this year, their plans for the holidays, and 2022. They share their previous experiences during holidays and the adjustments they made to lessen the anxiety and stress and to be able to be present and enjoy the blessings of being with their loved ones.

Key Takeaways:

[1:45] Kristy shares her plans for the holidays.

[2:57] Brenda talks about the stress that comes along with the holidays.

[5:12] Brenda shares how important it is for her to plan ahead.

[6:35] Brenda explains what she changed in order to take some pressure out of her shoulders.

[7:31] Lowering expectations can be a great resource.

[12:03] Brenda talks about the traditions she wants her children to pass on to future generations.

[14:12] Why do we hang so tight to certain traditions?

[17:13] Brenda talks about the things she does not do anymore since she does not have the time or the energy for them.

[19:15] Liz talks about the holidays last year and asks Brenda and Kristy what would be different this year for their holidays’ celebrations.

[21:20] Brenda talks about her plans last year.

[23:08] Brenda shares the excitement of traveling again to her favorite place in the world: New York.

[25:17] Kristy shares her plans and the anxiety created by the new COVID variant.

[28:14] Brenda and Kristy reflect on the highlights and lowlights of this year.

[36:02] What are Brenda and Kristy looking forward to in 2022?

[45:23] Let’s stop assuming that our experiences are the ones that our children need to have in order to be happy.

[47:25] What are Brenda and Kristy’s favorite things about the holidays?

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Brought to you by Chronically Simple

Simply Unbreakable

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Simply Unbreakable is where ideas are shared and conversations about navigating the healthcare system are had. The ideas shared are those of the individuals and should not be interpreted as medical advice.

Tweetables and quotes:

“Lower your expectations, eliminate the need for perfection.”

“Look for sustainable traditions.”

“Our kids don’t know anything different, our experiences from childhood don’t have to be theirs, as we didn’t have the same experiences our parents have had.”

Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are very excited to be accompanied by Dia Rahman who is a first-generation immigrant and a young caregiver working in tech. Dia is the oldest daughter in her family and became the primary caregiver to her mom in the middle of the pandemic after she had a horrific accident. She has been a patient herself since the age of 16 and that is why she uses the insights she gained from her experience as a way to navigate the health care system to advocate for her mother and her complex needs as a caregiver.

Key Takeaways:

[1:26] Dia talks about herself in her role as a caregiver.

[3:49] Dia talks about the transition into adapting to her role as a caregiver.

[8:08] What are the differences between navigating the care system from a caregiver perspective vs being a patient?

[11:17] Dia explains why documentation is everything.

[14:48] Was Dia and her mother impacted by the restrictions mandated during the pandemic?

[20:28] It is unrealistic to expect that a patient that does not speak the language would have what it takes to be able to navigate the health care system.

[21:14] “Essential” turned into what is convenient to certain people.

[24:50] Kristy, Brenda, and Dia highlight the emotional aspect of being an advocate for a loved one.

[33:01] Brenda shares a personal experience while meeting a committed and empathetic doctor that treated her child.

[34:33] Dia shows her appreciation of nurses’ work and dedication.

[35:39] How has becoming a caregiver affected Dia’s health?

[43:40] Dia addresses the difference in perception that people have about the life of a caregiver.

[45:33] Has been a young caregiver posted greater challenges for Dia?

Mentioned in this episode:

Brought to you by Chronically Simple

Simply Unbreakable

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Contact  Dia Rahman on Twitter

Simply Unbreakable is where ideas are shared and conversations about navigating the healthcare system are had. The ideas shared are those of the individuals and should not be interpreted as medical advice.

Tweetables and quotes:

“No one really plans to become a caregiver.”

“Essential” turned into what is convenient to certain people.”

“A little bit of humanity goes a long way.”

“Just because someone carries it well it doesn’t mean it is not heavy.”

Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are joined today by Adam Johnson. Adam is a dad with a rare disease who shares his experiences to help raise awareness of life with a rare disease.

In today’s episode, Adam shares openly how his journey was from starting to feel the first symptoms to actually being diagnosed. Adam realized that knowing what was going on with his health was only the first step of a long journey. Adam shares the challenges of being a parent with a rare disease and the efforts he is making to create more consciousness in regards to the lives of families that witness and experience the progress of a rare disease on one of their members.

Key Takeaways:

[:55] Adam shares his personal and professional journey.

[2:34] Adam was diagnosed two years ago.

[4:35] Adam talks about the process he went through until he finally got diagnosed.

[8:25] Adam found out he had a progressive disease called Mitochondrial Myopathy.

[9:45] Being diagnosed is just the beginning of the journey.

[10:50] What was the experience like for Adam when he first joined the Mitochondrial Myopathy support group?

[14:38] Kristy talks about the importance of finding just one person who understands.

[17:08] Adam is setting up a group for parents with a rare disease.

[19:58] What does it look like for Adam to be a parent diagnosed with a rare disease?

[21:10] Adam shares the initial conversation with his children about his diagnosis.

[26:13] Adam shares a special tweet he did about an experience with his son.

[27:33] Brenda talks about how siblings are affected when one of their brothers or sisters has a chronic condition.

[30:49] Kristy speaks about the overlooked link between physical and mental health.

[37:30] Kristy shares her experience dealing with postpartum depression.

[39:43] Receiving a life-changing diagnosis should not be the way it currently is.

[41:45] Adam talks about his efforts in taking away the stigma.

[43:30] Kristy talks about her experience in regards to sharing the mental health challenges she goes through.

[48:31] Adam talks about a secondary disease he has.

[54:30] Adam shares his experience joining Twitter.

[56:01] Prioritizing and owning your calendar is more important than you think.

Mentioned in this episode:

Brought to you by Chronically Simple

Simply Unbreakable

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Find Adam Johnson on Twitter and on Instagram

Visit Rare Disease Dad

Simply Unbreakable is where ideas are shared and conversations about navigating the healthcare system are had. The ideas shared are those of the individuals and should not be interpreted as medical advice.

Tweetables and quotes:

“Don’t get your hopes up about getting the diagnosis since it is usually that moment when the hard part starts.”

“After being diagnosed with a rare disease your definition of being ok changes radically.”

“There is an overlooked link between physical and mental health.”

“Being sick is a full-time job.”

Description: Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew welcome Cynthia Davidson to talk about her experience and journey as a rare disease patient. 

Key Takeaways:

[1:21] Cynthia talks about her diagnosis: Congenital Myasthenic Syndrome 

[3:31] Cynthia shares about the different treatments she tried with no luck.

[5:48] Brenda shares about the process until achieving the right causation for the Cerebral Palsy her son was diagnosed with.

[7:45] Cynthia talks about the limitations imposed by the weakness resulting from her disease.

[10:01] Cynthia talks about the incredibly expensive costs of medication.

[14:05] Kristy talks about access to the right medication when it is directly related to the patient’s quality of life.

[18:40] Advocating for your health in a time of suffering is terribly difficult but still inevitable if you want to receive the support needed.

[22:11] Sometimes it is just really hard to ask for help.

[24:05] It shouldn’t be complicated to access medical care, but it is.

Mentioned in this episode:

Brought to you by Chronically Simple

Simply Unbreakable

Download Chronically Simple App

Simply Unbreakable is where ideas are shared and conversations about navigating the healthcare system are had. The ideas shared are those of the individuals and should not be interpreted as medical advice.

Tweetables and quotes:

“When you are part of the rare disease community you learn more about the trials and tribulations in gaining access to treatments and how drugs are commercialized into Canada.”

“Why does the burden fall on the patient or the caregiver? Why do they need to fight to receive the proper treatment?”

“It shouldn’t be complicated to access medical care, but it is.”

Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are talking today about The Spoon Theory, a personal story by Christine Miserandino. The Spoon Theory is an essay that she wrote and had a great impact on people who are living with chronic conditions.

Christine lives with Lupus, a chronic autoimmune disease, that creates her immune system to attack her body’s healthy cells. One day, Christine was talking to a friend who was interested in knowing what it was like to live with this condition and this was the motivation for her to write the Spoon Theory. Listen to today’s episode to learn more about it!

Welcome to another episode of Simply Unbreakable brought to you by Chronically Simple. Your hosts, Kristy Dickinson and Brenda Agnew are welcoming Kristy Wolfe, who is a storyteller photographer and a mom of two wonderful kids. Kristy is sharing in today’s episode her amazing capacity to capture unique moments in photographs, pictures that are proof of resilience, that help to keep perspective and clarity over what was overcome and conquered, showing the effort invested in the journey.