Beating ALS (Lou Gehrig's Disease) to Death!

1 - I can do better 2 - Jury's out 3 - Pretty darn good 4 - Splendiferous 5 - Awesometastic by 3 people | Log in to rate

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Introduction to ALS

ALS (also known as Lou Gehrig's Disease) is a terrible illness that robs people of most of their abilities and brings early death in the vast majority of cases. It has no known cure, nothing to stop its progression and no mercy.

I know this disease very well. Between October of 2006 and May of 2009, I was one of my mother's primary caregivers as she dealt with being an ALS patient. I saw her go from a woman who loved hiking to being confined to an electric wheelchair, then a hospice bed and finally a casket. Through the process I've learned a lot, and that's why I created this page, to share what I know and do what I can to beat this thing someday.

What is ALS? 

In general, ALS is a devil of a disease. It causes a person to essentially lose control of his or her body.

Here's a more official definition. Amyotrophic Lateral Sclerosis, also known as Lou Gehrig's Disease, is a progressive neurodegenerative illness that harms nerve cells in the brain and spinal cord. Motor neurons take information from the brain and send it to the spinal cord and from there to the muscles of the body. ALS causes a progressive degeneration of those neurons. When they die, the ability of the brain to control muscle movement dies.

When the brain can no longer "talk" to the muscles, the muscles atrophy. All muscles. The muscles in the arms, legs, back, neck and even those that help with breathing, speaking and swallowing. The patient, depending on his or her order of progression, will likely lose complete control of the body and the ability to breathe fully independently.

What is the order of progression?

It varies. Some patients lose the ability to walk first. Others lose the ability to speak long before their other muscles are affected. For some, swallowing is the first thing to go. For my mother, she started tripping more often. Her progression started in her feet and legs, then slowly moved to her upper body and then began affecting her throat and lung capacities.

Our Story 

My mother, Martha, was diagnosed with ALS in October of 2006. She had experienced some loss of balance before then and wasn't feeling as strong as she used to.

We tried wet cell batteries, antioxidants, vitamin c and glutathione IVs, human growth hormone (HGH) and massage. None of those things stopped the disease and there's no way of knowing if they slowed it or not. There just aren't any guideposts. Mom graduated to using a motorized wheelchair in and out of the house. Her breathing declined next and she had a feeding tube put in to help with nutrition in December of 2008. She worked very hard to remain upbeat, which she did a good job of most of the time. Keeping her entertained was one of my tasks. She died on May 10, 2009, gratefully oblivious to what was happening.

It's hard to watch someone you love lose the ability to use their body, especially when that person has always loved to travel, hike, play tennis and ride rapids. This disease takes a devastating toll on anyone and once you experience it, you know how important it is to get more research - and how hard it can be to get people to listen. That's why I'm making these lenses in honor of my mom.

Why we need to beat ALS 

ALS is a horrendous disease and unfortunately a largely unknown one. You don't hear of many celebrities with ALS or working to fight it, with the exception of people like Angela Lansbury and Nancy O'Dell. There are no "Beat ALS" concerts or festivals. It affects far more people than are currently known because some doctors don't want to give that diagnosis because there is no cure. The number we were given is one in every 100,000, but there are so many people in this area with ALS, those numbers have to be wrong. Or there is a bad circumstance causing a cluster here. Or both.

We need you to help draw attention to this disease, to walk in the Walk to D'Feet ALS or to give money for research (or all of the above). Contact your governmental officials and ask them to help. Post banners on your websites. Talk to people about it. ALS is a death sentence right now with no end in sight and the only way to further push for research is to get the word out.

Angela Lansbury ALS PSA 

Bravo to Angela Lansbury for trying to get the word out about this disease.

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Experiences of a Caregiver 

Living with someone with ALS is very eye-opening, emotionally draining, and inspiring all at the same time. It's hard work but worth it to make someone's life a little better. I have been caring for my mother since her diagnosis in October 2006, and am recording some of my experiences at ALSCaregiver.com. I hope it's helpful to someone. These are my last five posts.

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Add the ALSCaregiver widget 

If you'd like to support ALSCaregiver.com, consider posting the widget. This code will automatically show the latest posts on your website. To add it, just copy and paste from this page: ALSCaregiver Widget Code.

ALS Support Group 

I just started this out of the old Martha's Marauders site I had. It's a place where ALS patients and caregivers can get together and support each other. Click the banner to visit:

Jason Becker 

Jason Becker was on his way in music - he'd been picked up to play with David Lee Roth. During the recording he started tripping and was soon diagnosed with ALS. He is now immobile and has been for years but refuses to stop writing music. Using special tools he writes songs his friends play for him. He's an inspiration.

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Jason Becker Videos 

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More information on ALS 

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Predictions... 

My prediction:

TribalDancer, at 2pm on September 17, 2008 predicts:

We will find a cure for ALS if enough people know about it and care.

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homebizproms, at 3am on August 26, 2009 predicts:

that out of sheer determination this killer will be demolished someday soon.

AFONTANA, at 7pm on March 15, 2009 predicts:

With my brother in law diagnosed just this past january, and his mom passing from it 13 years ago, our family is committed to seeing that he survive. He is currently on way to germany for stem cell injections, then onto Israel for other trials. I predict that in next 48 months a viable treatment for this disease will halt and possibly reverse the effects in early stage pals, with late term developing some reversal and developing improved functioning. Genetics are the future of this.

Kase, at 5pm on September 17, 2008 predicts:

We will moidah this thing! Everybody get the word out!

 
 
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Reader Feedback 

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  • Reply
    homebizproms homebizproms Aug 26, 2009 @ 3:19 am
    Great lens! My favorite. I have rated it accordingly. Thanks for sharing your personal experience. Pls feel free to read my lens on ALS. I also copied some of your links. Success in your strides.
  • Reply
    Elsasews Elsasews Mar 18, 2009 @ 10:26 pm
    Hi there, I have just found your squidoo, while looking for related sites. I am writing a site about making clothing work for wheelchair women. My sister has lived with Bulbar ALS for 4 years, and it has been my privilege to sew and alter clothes for her. I am hoping my experience will be useful for others who want to be wheelchair fashionable, a way to keep up spirits, right? Just search for wheelchair fashion or women in wheelchairs. I'm not sure what my squidoo site is. Beginner grrs. :)
  • Reply
    susannaduffy susannaduffy Mar 4, 2009 @ 5:45 am
    An excellent lens on a topic which touches so many
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My other ALS lenses 

Caring for the caregiver
One of the hardest things for me to do, besides coming to terms with mom's ALS in general, was to learn what I needed to do for myself. Being a caregiver can be a wrenching experience but there are a few things you can think about that may help.
How a caregiver has fun - and the patient too!
Being a caregiver for someone with a terrible illness can be a journey all by itself. It's difficult, sometimes painful, many times rewarding and oftentimes stressful. Especially if the patient is your mother, and the disease has no cure.
About Me, TribalDancer, and the growing list of lenses
The entire list of my Squidoo lenses.

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by TribalDancer

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