Sometimes we don’t realize all of the little things we take for granted – taking a walk around the neighborhood, tying your shoelaces, taking a bite of your favorite meal, or even just saying “Hello.” It’s only until those abilities are stripped away when we really start to appreciate what we have.
This whole marathon journey really got me thinking about life on the other side of ALS. I’ve seen firsthand what this disease is capable of, but how would I feel if it was happening to me? When you take the time to imagine yourself in someone else’s shoes it gives you a totally new perspective and a greater understanding of their daily struggle.
I want you guys to try this out with me: What did you do in a typical day that people with ALS can’t?
I’ll take you through my normal, everyday routine as an example:
- Wake up to my alarm, roll over and shut it off.
- Get out of bed and walk to the bathroom.
- Shower, wash my face and brush my teeth.
- Put on makeup and do my hair.
- Get dressed.
- Eat breakfast, drink some water.
- Walk to work and talk to my mom on the phone.
- At work I have multiple conversations, I type on my laptop, get up from my desk and walk around, eat lunch and some snacks.
- Walk home from work.
- Stand by the stove and cook dinner, eat, drink some water.
- Get dressed and go for a run.
- Stretch and shower again.
- Work on my laptop some more, talk to people on the phone, text some friends.
- Wash my face, brush my teeth, get dressed for bed.
- Go to sleep easily and comfortably.
- I’m also able to breathe the whole day without any difficulty or pain.
That “normal day” is a little different for people living with ALS. Here’s that same daily routine in the body of someone in the late stages of the disease:
- They might have woken up to an alarm, but were unable to roll over and turn it off. Their nurse or caretaker needs to assist them.
- They need to be lifted out of bed with a machine or someone strong enough to hold their limp body (basically dead weight at this point). Unable to walk, they are seated in the wheelchair or assisted into the bathroom.
- Someone needs to bathe them, wash their face, and brush their teeth since they are unable to stand or move their arms.
- They need assistance with any cosmetic application or something as simple as brushing/combing their hair.
- Getting dressed is a long and difficult task since they can’t move their head, arms or legs.
- Unable to drink, chew, or swallow, they need to have all of their meals blended or opt for nutrition supplements to be filtered through a feeding tube. Of course, someone has to do this for them.
- In the later stages of the disease, they will be unable to continue their job – living through the disease is now their “full-time position.” They will slowly lose the ability to speak so talking on the phone is a privilege they no longer have.
- However, there are ways to communicate with others. Patients can use (expensive) equipment to speak for them by using a screen attached to their wheelchair. Advancements in technology allow patients to use eye-tracking capabilities, typing words by simply looking at the keyboard on the screen. The output from the machine is typically the virtual voice of a stranger, but in recent years, patients have had the ability to record themselves while they could still speak so the output would be similar to their old voice.
- Instead of walking, they have to wheel around or be assisted by someone else.
- Before the disease progresses to the point of paralysis, patients can typically engage in different therapy sessions to try and improve their current condition. Therapists try to keep muscle mobility as long as possible without letting the patient exert too much energy or overwork certain areas.
- The rest of the night is more of the same from the morning and afternoon – feeding tube for meals, assistance in bathroom, etc.
- At the end of the night, they are either carried by someone or lifted into bed. Sometimes they have to sleep with special braces or devices to keep their body secure and attempt to provide a sense of comfort.
- Last but not least, they need assistance with breathing. Once those muscles become weaker, patients rely on a range of ventilation support devices to keep them alive.
So, did that change your perspective at all?
It certainly changed mine. Like I said before, I know what ALS is capable of. It kills me to read all the stories about the progression of the disease in people who have been recently diagnosed or who have passed away. I always get flashbacks of my grandmother – how she was so thin and frail after diagnosis, how she had to blend all her meals and then eventually have a feeding tube put in when she was no longer able to swallow, or worst of all, how she had to use that damn machine to speak for her.
It’s hard to really understand the severity of ALS if you haven’t seen how it can take a toll on the body. But when you imagine everything as if it’s happening to you, the weight of the disease really sets in. It makes you appreciate your health and think twice about those little things you take for granted.
Life can change in the matter of seconds. And for all ALS patients, it did. They never expected this to happen to them and they definitely didn’t ask for it. But for all of us on the other side of the disease, we can help change their lives again, this time for the better.
Let’s help support those who can no longer support themselves. By making a donation to the ALS Association you will be helping to fund research for a cure and provide patient care services to make those daily struggles a little easier.
Check out my Crowdrise page to make a contribution: http://bit.ly/BostonBeginnings262