Saturday, August 23, 2014

Living with ALS: Todd Neva's story by Sarah Blakely FOX TV6

Living with ALS: Todd Neva's story: When Todd Neva was diagnosed with Amyotrophic Lateral Sclerosis in 2010, he didn't believe it was true


HANCOCK -- “I just didn’t think I had it. I thought he was wrong. Who would believe it?”
Todd Neva describes the day a neurologist told him he was showing early signs of ALS as uneventful, as he sat in disbelief that he really had the disease. He first noticed possible symptoms of ALS in 2010 when he struggled to lift his daughter out of her carseat. Just a few months later, he was diagnosed.
Amyotrophic lateral sclerosis, or Lou Gehrig’s Disease, is a neurological condition in which the voluntary muscles in the body progressively lose their ability to function. It has no cure, no known cause, and the end result is sadly death. Todd and his wife, Kristin, struggled to come to terms with their new reality.
“It was devastating,” said Kristin. “We had two young kids. Isaac was nine months old, and we thought there was a great likelihood that he would never even remember Todd.”
“I remember the first time that I couldn’t swing a golf club, and I thought, ‘Well, that’s ok. I can do without golf,’” recalled Todd. “But then the first time I couldn’t squeeze a mustard bottle, I cried. It was hard.”
Todd now uses a powerchair to move around and voice control software on his computer to write emails. Everyday tasks, like putting on clothes or reading a book to his kids, Sara, now 8, and Isaac, now 4, are a challenge.
“Now I’m sitting in the passenger seat and she’s driving, and that’s hard. It’s hard for a guy to have your wife drive!” he laughed. “But it takes a little bit of time to adapt to it, and I’ve surrendered and I’ve relaxed.”
They have since published a book titled "Heavy" cataloging their journey and how they came to find joy in the midst of suffering by taking life one day at a time.
“We can’t go for a bike ride as a family anymore, but today I can be thankful that Todd can still watch a movie with us, or go to the fair. We just went to the fair last night,” said Kristin. “So there’s still joy that we can find in life and things that we can be thankful for.”
Todd and Kristin said they’ve also found some comfort in the thousands of videos of the ice bucket challenge, which, according to the ALS Association, is credited for raising over $53 million. Kristin, Sara, and Isaac, even took the challenge themselves Friday.
The Nevas said they hope their story will serve as an encouragement to others suffering through any hardship and that the ice bucket challenge will teach people how to be compassionate.  
“Soon enough, their newsfeeds will go back to cat videos and covers of ‘Let It Go,’ but right now ALS has the spotlight,” said Todd. “I think what’s wonderful about that is somewhere in there, somebody’s heart will be changed.”
The Nevas’ book, "Heavy," can be purchased on Amazon here. For more information about ALS and the ALS Association, visit their website.

Wednesday, August 20, 2014

Ice Bucket Challenge by Todd Neva

Ice Bucket Challenge

August 19, 2014, by Todd Neva
Isaac Neva taking ALS Ice Bucket Challenge for Daddy
Isaac Neva taking ALS Ice Bucket Challenge for Daddy
“What happened to you?”
I’ve been asked that question, or some variation of it, many times by people I meet.
“I got sick,” I would answer. “I have a neurological disease. It’s a brain disease, called ALS.”
If my new friend is older, I tell him I have Lou Gehrig’s disease. Older folks know that disease, heard of the man, the baseball legend Lou Gehrig, and how he died.
But I wouldn’t call it Lou Gehrig’s disease if my new friend is younger than, say, 50.
“ALS stands for amyotrophic lateral sclerosis,” I explain. “Amyotrophic is Greek for no-muscle-nourishment. Every voluntary muscle in my body will weaken, and I will become completely paralyzed, even losing my ability to swallow and breathe.”
“Oh! How do they treat that?”
“They don’t. There’s no known cause, no cure.”
“Oh!” His eyes widen, suddenly realizing the significance of this disease that has put me in a wheelchair, robbed me of my independence, took everything from me but the love and support of my family and friends.
“But life is good,” I ease the tension. “Not everybody gets to retire at age 41.”
For conversations like those, I am glad to see the ALS Ice Bucket Challenge.
The ALS Ice Bucket Challenge is raising awareness of this orphan disease, this devastating disease that cuts down a small percentage of people,* but does so cruelly and quickly, usually within two to five years.
The disease impacts each pALS, person with ALS, differently. For some the disease starts in the arms, then moves to the legs, then to the bulbar, which are the muscles in the core of the body controlling breathing , swallowing, and speech. For others, the disease starts in the legs, then moves to the arms, then to the bulbar. For some the disease shows up first in bulbar, slurring speech and sometimes leading to an initial misdiagnoses of stroke.
However it starts, every pALS has to deal with change. The toughest challenge for me has been change. At any given point, I think to myself, “If it would just stop now, I could deal with it.” But it doesn’t stop. This disease, ALS, is relentless, robbing me of independence month after month. I vividly remember the first time I couldn’t swing a golf club. “It’s okay, I thought, I can do without golf.” As clearly as I remember where I was when I saw the twin towers collapse, I can picture myself sitting at the kitchen table when I was first unable to squeeze a mustard bottle. “It’s okay,” I thought, “my wife can put mustard on my hamburger.” There were more setbacks, month after month, each devastating: unable to comb my hair, unable to button my shirt, unable to pull on my cowboy boots, unable to drive, unable to bathe myself, unable to lift a glass to my mouth, etc. I have very limited use of my hands. I struggle to walk. I fall occasionally. I sleep a lot. I require a personal caregiver for the most basic tasks. But even now, I think, “If it would just stop, I could deal with it.” But it doesn’t stop. ALS is relentless.
The ALS Ice Bucket Challenge is raising money for a worthy organization. The ALS Association announced on Monday, August 18, that it has received $15.6 million in donations compared to $1.8 million during the same time period the year before.
ALSA provides practical support for pALS and their caregivers, such as adaptive equipment, support groups, social service guidance, and financial assistance to help with medical expenses. I have benefited personally from the organization, and I’m very grateful for them.
ALSA also provides grants for medical research. This is a wonderful time to be funding ALS research because recent discoveries have given valuable insight into the mechanism of the disease. There are a few medical trials, which are in progress now, that are looking promising.
So whether someone chooses to just dump the ice water over themselves, to just donate, or both, it’s all good. Thank you! People are becoming aware of this disease, the money is flowing to the ALSA, and we’re all getting a good laugh in the meantime.

* Less than 2 in 100,000 people are diagnosed with ALS each year in the United States. About 30,000 people are living with ALS in the United States at any given time.

Startups by Allen Laudenslager A voice in the wilderness

Startups

A voice in the wilderness


Allen Laudenslager 19 Aug 2014

Startups are fundamentally different from anything else you can do in business.

In many ways a starting a company is just like raising a child. Everything is for the first time - new and untried. No matter how much experience the people have designing the product or servicing the customer; with a startup it’s still the first time that particular task has ever been done with those people in exactly that way.
Just as an established company has to build a relationship and reputation with a new customer, a new company has to build a relationship and reputation with every customer. An established company has staff interrelationships that are just being built in a startup and will inevitably impact how and how well those people work together.
Every new product or service will have problems to solve. Just think about the last time you bought a new TV or a new car. You had a learning curve just to figure out how to set the clock or the date since every TV or car has a slightly different procedure.
An established company has processes and procedures for most of its day-to-day operations. A policy for handling customer complaints and refunds, and a set dollar amount that the service person is authorized to spend without asking permission and so on.
The first key lesson for a startup to learn comes from the French philosopher Rene Descartes – Each problem that I solved became a rule, which served afterwards to solve other problems.
The takeaway from this is for you to keep close track of problems and successes to develop processes, procedures and guidelines to deal with future issues. This deceptively simple practice is the key to scaling your business and allowing you to add staff without losing the very things that set you apart from the competition.
Every startup begins with an idea and that must be turned into a plan to actually create a product or to deliver a service. Depending on the business that plan might be very simple or complex but just like planning a trip to the grocery store without a list you end up forgetting the lunchmeat!
While a better plan generally leads to better results, its far too easy for you to get caught up in trying to write the perfect plan and to account for every possibility, leading to the well known “analysis paralysis”.
The second key lesson for a start up is - A good plan implemented today is better than a perfect plan implemented tomorrow.
George Patton
Your takeaway this time is that while you must do enough planning to know were to start, what you need to start with and where you are going, you should start actually doing something as soon as practical. Just like that mythical trip to the grocery store I mentioned earlier, you can always add or subtract items from the during your shopping trip, but start filling your cart!
Reading the startup advice in most business magazines you will see the reoccurring theme to not let finance hold you back. While this is good advice in the main you still need some cash to get started.
I can start a ditch digging service with a car or truck (or a bus ticket) to get to the job and a $15 shovel. Without that transportation and the shovel I can’t start a ditch digging business! I specifically chose a ditch digging business since the cost of tools is just about as low as you can get, but as you can see there is a minimum you need to get started.
How many times have you seen a need for a service or product that you’ve thought “I could make a lot of money building that or doing that for that customer”? In looking at exactly how you could make the product or deliver the service you find that you need some cash up front to buy the raw materials and tools to actually build the product or deliver the service (and by the way feed yourself till you get paid) and decide that you just don’t have the cash to make it work?
Most of us have shelved the idea and moved on looking for something we can do with the resources we already have or use what we do have to get a sample together to get more funding.
Its OK to look for opportunities within your budget or skill set, it is also OK to look for ways to expand your budget or acquire new skills but to you really only have those two choices. My business experience has taught me that more ideas fail for lack of funding than funding is wasted on bad ideas.
The key to places like Silicon Valley and Austin, Texas is not the universities that turn out educated people, although that helps, Its not the co-location of research and development branches of big businesses although that helps too. The “secret sauce” is the people willing to risk their cash on new ideas!
The last takeaway is that you should never saddle yourself with so much debt that you lose control; but never borrow just enough to give yourself a case of the shorts. You've got to have enough cash to finish!

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