Where do I start…
Last week, I started seeing people post videos about an “Ice Bucket Challenge” for ALS.
Admittedly, with the first video that I watched, I figured it must have been for something else with the acronym ALS. I did not expect it to be for Amyotrophic lateral sclerosis. Here’s the scoop from the ALS Association’s website (http://www.alsa.org/news/archive/ice-bucket-challenge.html):
Beverly, Mass., resident Pete Frates, started the “Ice Bucket Challenge” with his family on the social sites Facebook and Twitter. Frates, 29, has lived with ALS since 2012, and he has worked with The ALS Association’s Massachusetts Chapter. A former Division 1 college athlete with Boston College Baseball, Frates tirelessly spreads awareness of Lou Gehrig’s Disease.
So when I found out that it was in fact for the same ALS that I have witnessed first-hand, I was overjoyed that other people were successfully raising awareness for ALS. Truly, I am very happy to see ALS getting noticed. A headline from Huffington Post reads, “Ice Bucket Challenge Leads To 1,000% Spike In Donations To ALS Association.” That’s incredible. Also from Huffington Post:
The ALS Association’s national president, Barbara Newhouse, said donations to the national office surged during the 10-day period that ended Thursday, to about $160,000, from $14,480 during the same period a year ago. That’s not counting donations to chapter offices around the country, Newhouse said.
“It’s just been wonderful visibility for the ALS community,” Newhouse said. “It is absolutely awesome. It’s crazy, but it’s awesome, and it’s working.”
I’m glad to see that it’s having a huge impact. This is wonderful news. The funds received will be a tremendous help in aiding research, and to further continue to raise awareness.
In addition to research, the funds will be a huge help to families in need of assistance and extra care.
The nerves that are affected when you have ALS are the motor neurons that provide voluntary movements and muscle power. Examples of voluntary movements are your making the effort to reach for the phone or step off a curb; these actions are controlled by the muscles in the arms and legs. (http://www.alsa.org/about-als/what-is-als.html)
In the case of my dad’s muscle degeneration, he started off needing a cane to help his balance when walking. From the cane he went on to using a walker. Walker to motorized wheelchair. Motorized wheelchair to hospital bed. Mobility is only one aspect. Consider trying to feed yourself when you are no longer able to chew or swallow food, let alone even be able to lift your hand to reach a fork. Blood circulation and bed sores become an issue, as the patient’s body is pretty much in one position most of the time. Even with extra care, it’s difficult, to keep up with the body’s decline.
It is an immense task for both the patient and the family members who are involved. It can be frustrating and can begin to break your spirit. ALS attacks voluntary muscles, ultimately leaving the patient trapped inside their deteriorating body with no way of communicating or helping themselves.
Thanks to the kind-hearted souls at Lehigh Valley Hospital, Good Shepherd and The Greater Philadelphia Chapter, my dad was able to live as comfortably as possible. My dad used a BiPAP and Coughaltor to keep his lungs clear, since he was losing strength in his chest and lungs. Without a motorized wheelchair and a wheelchair ramp, he would have been more or less confined to a bed for the last two years of his life. The hospital bed made it a million times easier to move him into the shower, or simply to adjust his positioning in bed and help circulation. Thankfully he had a feeding tube put in while he was still pretty healthy. He was able to eat with a fork up until a week before he passed. But the last week that he was alive the feeding tube allowed him to not starve to death.
These are some of the realities of ALS and other neurodegenerative diseases.
Machines, equipment, doctors – it all adds up. For the majority, the disease is not hereditary. We weren’t prepared. Dad had started to lose some weight and got weaker before he was diagnosed. But never would we have been able to imagine the road that lie ahead. We simply could not have done it on our own financially.
So I personally thank the people who are donating and helping to spread the awareness of ALS.
But… I do have to say this…
Please don’t forget that this disease is real. It’s not just a fun game to play on the internet. I started to get the feeling that it was becoming a online game of tag-you’re-it. It’s a devastating disease.
The progressive degeneration of the motor neurons in ALS eventually leads to their death. When the motor neurons die, the ability of the brain to initiate and control muscle movement is lost. With voluntary muscle action progressively affected, patients in the later stages of the disease may become totally paralyzed. (ALS Association)
I admit, that I’ve never taken something like this personally. It’s not something that I’ve experienced before. I’ve seen people raise funds and awareness tons of different ways, I’m sure. But I’ve never had one of the hardest things that I’ve had to experience in my life… blasted all over the internet like it’s a game. I watched my dad wither away. I held his hand while he was in a morphine coma the day before he died. I felt the regret of being at work on the night that he died. I cried and drank myself stupid the night before my college graduation, because there was going to be one person missing.
So if you’ve donated because of the #IceBucketChallenge, I thank you. If you’ve kept the #IceBucketChallenge going, I thank you.
But I’d love for you to strive to spread real awareness even after the #IceBucketChallenge dies down. Educate yourself and others on the realities of ALS. Spread awareness because you feel compassion for the families whose lives are never going to be the same. Spread awareness because there is no cure for ALS. Hopefully research backed by your funds will be the answer. Donate to help those currently struggling with ALS, that they might receive assistance and care while they carry out the rest of their days by spending what time they have with their family and loved ones.
To donate and find out more go to: http://www.alsphiladelphia.org/donate
