A.L.S. - Lou Gehrig's disease

Summary

In this heartfelt video, the speaker reflects on the emotional and physical toll of living with ALS. They share the initial shock of their diagnosis and the gradual, debilitating changes they’ve experienced. From the difficulty of performing everyday tasks to the growing challenge of communication, the speaker candidly discusses how ALS has impacted their life. With raw honesty, they express feelings of both fear and gratitude, acknowledging the drastic changes and the struggle to maintain independence, all while urging others to understand the reality of living with this devastating disease.

Takeaways

• 😀 People often ask, 'How are you doing?' but the real question is 'How are you really doing?', which is a much deeper and more complex conversation.
• 😀 The speaker reflects on how they viewed their condition six months ago versus now, acknowledging how much has changed since their diagnosis.
• 😀 The speaker expresses gratitude for their past self, acknowledging the luck they had at the time before things got worse.
• 😀 The speaker is aware of the curiosity others have about their condition but notes that people may hesitate to ask due to discomfort around the subject.
• 😀 It has been a little over two and a half years since the speaker was diagnosed with ALS, and they are seeing continuous deterioration of their abilities.
• 😀 The speaker recalls a recent attempt to walk a small distance they were once able to, but now can no longer do, highlighting the progressive nature of their illness.
• 😀 The speaker feels that the video made earlier about their story didn't fully convey the severity of their disease or the drastic changes they've experienced.
• 😀 The disease has affected every aspect of the speaker’s daily life, from eating and going to the bathroom to basic personal hygiene tasks.
• 😀 The speaker’s voice has changed significantly, and they find it increasingly difficult to communicate, which adds to their fear of isolation and losing connection with friends.
• 😀 The speaker emphasizes the emotional toll that the disease takes on them, particularly in terms of the loss of independence and ability to do things they once could.

Q & A

How does the speaker feel about the typical question, 'How are you doing?'

The speaker feels that the question 'How are you doing?' is oversimplified and doesn't capture the complexity of the situation. The real question is 'How are you really doing?' which invites a much deeper conversation.

What reflection does the speaker have when looking back at their earlier video about ALS?

The speaker reflects that they were lucky at that time, as they were still able to do certain things. They express surprise at how they ended up sitting in front of cameras and microphones to talk about their condition.

What motivates the speaker to make videos about their experience with ALS?

The speaker wants to provide an honest account of their experience, showing both the good and the bad sides of living with ALS. They aim to help others understand the condition and why someone so young might be in a wheelchair.

How long has it been since the speaker was diagnosed with ALS?

It has been a little over two and a half years since the speaker was diagnosed with ALS.

How has the speaker's condition changed since their diagnosis?

The speaker mentions that the progression of ALS has been gradual but significant. Over the past six to nine months, they’ve experienced drastic changes, losing the ability to do basic tasks such as eating, going to the bathroom, and brushing their teeth without assistance.

What specific change in the speaker's physical abilities stands out the most?

One of the most noticeable changes is the speaker's ability to walk. They were able to walk on their parents' driveway a month ago but couldn’t do it during a recent attempt.

What aspect of the earlier video does the speaker feel was missing?

The speaker feels that the earlier video didn't fully convey the severity of ALS. It was somewhat sugar-coated and didn't accurately represent the drastic impact the disease has on their life.

What is the speaker's biggest concern regarding their condition?

The speaker's biggest concern is the loss of their voice, which is becoming increasingly difficult to use. Communication is becoming more challenging, and this is frightening to them.

How has the speaker's independence been affected by ALS?

The speaker has lost almost all independence. They can no longer perform basic activities like eating, going to the bathroom, or brushing their teeth without help.

Why does the speaker mention their voice as a significant change?

The speaker mentions their voice as one of the most noticeable changes because it’s getting worse. This affects their ability to communicate effectively with others, which they find scary and unsettling.