How I’m Living My Best Life with Multiple Sclerosis | Robin Brockelsby | TEDxUniversityofNevada

Summary

In this powerful speech, a woman shares her journey after being diagnosed with multiple sclerosis (MS), an autoimmune disease affecting the central nervous system. She describes her initial symptoms, the emotional toll of the diagnosis, and the physical challenges she faces daily. Despite the unpredictability of MS, she remains optimistic, focusing on her attitude, support network, and lifestyle choices to manage her condition. She emphasizes the importance of not viewing her fight against MS as a losing battle and encourages others to find strength in their own health journeys.

Takeaways

• 😷 The speaker initially mistook their symptoms for a sinus infection but later discovered they had multiple sclerosis (MS).
• 🚑 MS symptoms can be debilitating, affecting daily activities like eating, walking, and even driving.
• 🧠 MS is an autoimmune disease that attacks the central nervous system, disrupting communication pathways in the brain and body.
• 🏥 Diagnosis of MS is complex, involving blood tests, MRIs, and sometimes lumbar punctures.
• 💊 Treatment for MS is costly and can be financially burdensome, with some treatments costing hundreds of thousands of dollars annually.
• 🌟 The speaker emphasizes the importance of a positive attitude, support networks, and managing stress to cope with MS.
• 💪 Physical exercise is crucial for managing the disease, even though the speaker had to adapt their routine due to MS.
• 🤝 Engaging with organizations that support MS patients helps create a community and empowers individuals to make a difference.
• 🌈 The speaker rejects the notion of fighting a 'losing battle' with MS, choosing to focus on living their best life despite the challenges.
• 🎯 The speaker highlights the unpredictability of MS and the importance of focusing on the present moment and current well-being.
• 🎁 Despite the hardships, the speaker finds gifts in their experience, such as deepened relationships and newfound appreciation for life's simple pleasures.

Q & A

What were the initial symptoms the speaker experienced before being diagnosed with multiple sclerosis?

The speaker initially experienced dizziness, blurry vision, numbness on the right side of the mouth, and heaviness in the right leg.

How did the speaker's daily activities become challenging due to her symptoms?

The speaker found it difficult to perform daily activities such as putting on makeup, brushing her hair, and eating because she was dropping everything and had difficulty lifting her arm.

What is the medical term for the protective barrier of the nerves that the speaker mentioned?

The protective barrier of the nerves is called myelin.

What does the immune system do in the case of multiple sclerosis according to the speaker?

In multiple sclerosis, the immune system mistakenly sees the brain, spine, and optic nerves as enemies and launches an attack on the nerves and their myelin sheath.

What are some of the common symptoms of multiple sclerosis mentioned in the script?

Common symptoms of multiple sclerosis include numbness, spasticity, balance and movement issues, bladder and bowel control problems, brain fog, fatigue, and visual impairment.

How did the speaker feel after receiving the diagnosis of multiple sclerosis?

The speaker felt immediate relief upon diagnosis because she wasn't dying and had an answer for her symptoms, but later experienced fear and grief.

What is the average lifespan for someone living with multiple sclerosis compared to the general population?

The average lifespan for someone living with multiple sclerosis is only seven years less than the general population.

What is the cost of the speaker's drug therapy for one year?

The cost of the speaker's drug therapy for one year is $260,000, most of which was covered by insurance.

How does the speaker cope with the stress related to her condition?

The speaker eliminates stress from her life as much as possible because stress can trigger an MS flare-up and has a physical reaction to it.

What is the speaker's approach to fighting her disease?

The speaker fights her disease by maintaining a positive attitude, getting involved with organizations that support people with MS, managing her disease with a combination of eastern and western medicine, exercising regularly, and looking for the gifts or positive aspects in every situation.

What advice does the speaker give to people who want to support someone newly diagnosed with a chronic disease?

The speaker advises people to ask questions, be a supportive listener, and if sharing a story, make it a success story to provide encouragement.