Illinois man, Took the ice bucket challenge, Not realizing That I AL Goes on a journey of his life: “late diagnosis of a reputation after the answer’

Posted by: Newswalle

In August 2014, ray Spooner took the ice bucket challenge ” in front of his house in Urbana, Illinois.

“At that point, AL was just a bunch of letters to us, we really don’t know anything about” ray woman, Rae Spooner, tells PEOPLE. “Just two months later, symptoms started enough that you went to the doctor, and then in January was diagnosed with it.”

When rays the doctor took a diagnosis of amyotrophic lateral sclerosis (als) is a neurodegenerative disease, nerve cells in the brain and spinal cord causes weakness and finally paralysis of all muscles of volunteers,” said 56-year-old was at the time of the check list items cube.

For each assessment, ray Spooner lived an incredible and full life. He is married to the love of my life, 32 years, has three children and travelled around the world. Also brought nothing 2.000 children (including a grandson) in the world in their nearly two decade career as a midwife.

Ray Spooner (right) and her daughter Sofia

Ray Spooner

So when it came time to start a list of things you want to achieve before his death, ray spent three things: Spend more time with family, has a bar mitzvah and go to the last Bicycle journey across the USA.

October 18, ray dip the rear wheel of your bike on the Pacific ocean at Ocean beach in San Diego , California, and his adventurous journey. It will he for the next month to drive around 100 km a day from the United States, in order to raise awareness and funds for the muscular dystrophy Association of research centres and support services. He expects that by the end of their tour, along with his front wheel in the Atlantic ocean.

As an avid cyclist, ray said that the plan for what he called his “little trip” came “about 30 seconds after diagnosis”.

“I finished the waves 500 miles, 1000 miles shafts for the cause of charity, but it’s a bit more at the end,” he says. “End of diagnosis reputation after the end of the answer. It was supposed to be, from coast to coast is the only thing that can control the diagnostics.”

The first symptom is London born ray credits “silence annoyed” voice and helped him discover his calling in life and even falling in love with his wife. “He was very quiet, and I was very strong, so we probably pulls?”, she says.

Rae and Ray Spooner on their wedding day in 1983

Ray Spooner

I was a student in the care, ray was to participate in childbirth and the resolution of the rotation, when the mother was asked not to leave, from the outside, when it’s your turn. His voice, she said that I helped her to relax.

“On this day I felt a little gears moving in my brain and I started thinking, if only someone helps me this experience is very difficult, maybe need to think a little depth,” he says. “It’s the only job I ever had, not when the volume of my voice was not the responsibility, to be honest.”

He decided to specialize as a labor and delivery nurse and, finally, to go back to school to become a midwife. To date, Ray (softly) spoke about the women through the birth process 2,095 babies.

In the summer of 2014, RAE started to notice that his voice, the referee that a lot in his life, he begins to change.

“When I think about how there was a slight change in my voice last summer, but only at certain times of the day,” he says. “Midwives are doing with 24-hour reception calls and so, at dawn, 2, 3, 4 a.m., some words sounded strange to me, and I was beginning to worry – I don’t want people to think drink or something.” ”

Ray Spooner (right) with his grandson Jack, both wearing t-shirts with her “little trip” motto

Ray Spooner

Then he began you have any difficulties to play the guitar – a hobby for life has become particularly valuable, as to extinguish their newborn grandson, Jack.

That DiagnosisAs your symptoms have worsened, ray is convinced that he suffered, was caused by compression of the nerve years on the bike, so he made an appointment with a neurologist.

“The neurologist suspected the first time that I’ve seen what it can AL, but he wasn’t ready to tell me that because they can’t diagnose in one visit,” he says. “When I insisted, he said it was one of the things I thought it could be.”

“I’m a doctor” – he continues. “I know AL, but even so, the first thing I did a search on the Internet to see, ‘Well, it’s a special kind of rays Spooner HOW could it be otherwise, THAN from the other, you can hear so much about you?’ “- she was joking. “But, unfortunately, no.”

ELA-Ray held the search was the same incurable disease affects estimated of 30,000 Americans.

“In General, life expectancy after diagnosis is roughly two to five years, but there is a big variability,” Amanda Haidet-Phillips, the Official Scientific programmes, MDA, tells PEOPLE. “WHAT is taking the person’s ability to walk, to stand, to hug, to move, to speak, and eventually this leads to the fact that the muscles used to breathe and swallow to deteriorate.”

“It’s an incredible feeling of loneliness,” ray says of the moments after their diagnosis. “My wife knew I went to see a neurologist and called me to ask how the visit was far and I could not even me the words to say. She came home and I still couldn’t tell her – I couldn’t word.”

Find AcceptanceAs a message from the diagnosis and distribution, ray quickly discovered that I was gone, to be alone.

“If you have a diagnosis, you together with a bunch of other people, and think like, ‘wow, there are a lot of people who this diagnosis.’ It’s like Smoking marijuana” jokes she. “If you have, you will find many people around who also have.”

Ray Spooner, posing his wife, mother, sister, three sons and grandson

Ray Spooner

He says his local MDA clinic also had a huge impact, making all the necessary resources, physical therapists, internists and neurologists say – in one place.

“There is a whole support system that not even knew it existed until we need them,” ray says. “Is partly what travel is about – back to the community, while you still can.”

Ray has set a goal to raise $50,000 for MDA to support clinics, helped him, and to submit additional studies.

Now deleted, spent 10 months preparing for this “little trip” will guide you about the extent 3.074 km across the southern United States.