For this neuro note, I decided to look into a blog about someone who has been fighting ALS since they were diagnosed in 2015, at the age of 28. Her blog is titled "How I Live Now: Life with ALS" and she has been willing to be open and transparent about her journey living with a progressive disease. It took her almost a year until she started a blog in late May of 2016. She talks about the struggles having ALS (Amyotrophic Lateral Sclerosis aka Lou Gehrig's disease), like not being able to teach, the symptoms that occur, relying on others to help take care of her, not having the same chances to travel and not being able to start a family. However, she also mentions how this disease has changed her outlook on life and is grateful and humble for what she has and having the opportunity to share such a story that is unique and special to her. Being able to read about a personal story of someone with this neurological disease was so eye-opening and allowed me to encounter such an inspiring story. From reading her blogs, she discusses her symptoms and the challenges she has dealt with, but she always seems to stay positive and have the best outlook and mindset on life. She definitely has her days when it is hard, but she also finds joy knowing she has a great support system, especially her husband, Evan and her medical team. I learned that ALS affects upper and lower motor neurons, which Rachel mentioned she has the disease that affected the upper motor neurons, so her prognosis is better than those who have the lower motor neuron type. Also, she is having to use a catheter to help with bowel and bladder function, she has lost her ability to speak, as well as move her limbs, she gets fatigue easily, and has spasms. She also talks about the different surgeries, treatments, adaptive equipment, and medications she is on and has been through and using. Her lungs are starting to dysfunction, and she may only have up to 3 years to live, but she still presses on and lives life to the fullest and most potential that she can. I am glad I chose to do this specific type of note for this assignment because it gave me an insight on how ALS can affect someone, but even more how reading and learning about someone's experience with a disease like this helps advocate and raise awareness about it. In addition, her letting us get a glimpse into her life, allows us to be in her shoes and have empathy for her, as well as support her. I would highly recommend reading her blog and experience what I did!
Below is a link to access Rachel's blog:
https://howilivewithals.com/
Doboga, Rachel. “How I Live Now: Life with ALS.” How I Live with ALS, 21 May 2016, howilivewithals.com.
No comments:
Post a Comment