Hope for Joy

Why Hope for Joy now that Joy has passed

2011-11-17T11:52:00.012-07:00

When Joy was first diagnosed with ALS, she and I discussed the future that she faced. We knew the prognosis, and she knew the reality: no one has ever survived from this disease.

My therapy was to equip myself with knowledge. I buried myself in literature on the topic while Carl and Joy pursued possible therapies, diets and also how they would spend their last months together. While they focused on Joy, I branched out in pursuit of "why" and learning of others living with this disease.

I met Kay Marie, whose husband, Web, had been diagnosed with bulbar onset ALS. She is a trooper with the determination and fighting spirit I so admire. Like myself, she took on a “get out of my way” attitude in an effort to right the wrongs of the world. Web passed only a few months before Joy and I continue to share notes and benefit from her inspiring messages.

I met Barry who lives in northern Alberta and is currently living with bulbar onset ALS. Barry is very active in raising awareness of this disease. He is also incredibly funny, and I miss his humor as I hear less and less from him these days. I know that ALS is taking its toll on his spirit as well as body, and I think of him and pray for him every single day.

I met Joel who was most outspoken about ALS not being a terminal disease. Joel was the only person I knew who had opted for a tracheotomy and it was this tube that kept him alive. He had at least one close call where the tube came dislodged and no one was there to fix it. Fortunately his son discovered him unconscious and was able to reaffix the tube and revive him. One day I read a note from him stating that he wanted to remove the trach tube and die a natural death, but if he did so it would be deemed as suicide. Here was a man who was kept alive artificially for years now being told that if he shut of the machine, it would be taking his own life. A month later, he was gone.

I met Iris who was so tormented by the disease, and distraught at having to give up her dogs, and not have access to her family. One day I read that she too had passed. I met Lee who is a musician and creates music from his bed through the use of a computer. He was just 40 when I met him, was engaged to be married and had been looking forward to a long, exciting future before ALS. I have not heard from him in a very long time, and I fear the worst.

In fact, I met so many incredible people through this disease that Hope for Joy became a much bigger mission than saving my best friend. I found holes in the system and people preying on the desperation of the people who have no hope.

There is the man who claims to be “winning” and sells books and supplements online stating that he has overcome ALS. Joy prescribed to his diet while I chose to dig deeper into his rather bold claim. This man stated clearly and repeatedly that he did not profit from the sale of the supplements, which are linked, throughout his site. I engaged my amateur hacking skills, dug through the source code, and traced the link payments to his wife. So, in fact, he is not making money from promoting the supplements…his wife is.

Then there is one of the largest not-for-profit groups in the US, which is so infiltrated in so many ways that it is staggering if not frightening. They contacted Joy when she was first diagnosed; just to let her know “they were there for her.” I found this disturbing as there was really only reason to contact her, and they were certainly not “there for her.” As a registered charity, they must publish their financials, so unlike most, I actually read them. It is a web of white-out and obscurity, but there were a few numbers that were quite evident: gifts and wages. When I brought into question the gifts and six-figure salaries, I received a phone call…yes, a phone call. I have since learned to avoid that quagmire although it pains me to know so much money is raised and yet so many with ALS go without basic needs.

And of course most of you have probably watched “Snake Oil Salesman” and if you haven’t, please do. It is located here on my blog or on the Hope for Joy Facebook page under videos. This type of business takes place every day, all around the world, and there is nothing and no one who is willing to step in and put a stop to it.

In short, I wanted to share with you why I am so involved with ALS, and why I continue with Hope for Joy even though Joy has gone. For me, ALS has become a community of people in need in a world without regulation or support. It is a minefield of people wanting to take advantage by selling hope to the hopeless,

It is about real people, like Barry, like Joy, like Web and like Lee who are losing a piece of themselves every day, and have to come to terms with their reality. For me, it is impossible to walk away now that I know the people and the challenges they face.

My goal is to raise awareness and offer a shelter of support for those living with ALS. It would be wonderful if people learned more about the disease and understood that while a person’s body is failing, there is a real, loving, caring and hurting person in there, trying to get out. Trying to get back to normal, and knowing it will never happen. I also want people to know just how vulnerable those with ALS are in a world without hope and regulation. It would be nice if there was some where to turn that offered some form of hope without selling snake-oil.

The Hope for Joy Online Auction, the website, the Facebook page, this blog; these are all part of the bigger picture, which is to draw attention to the people with this disease and to make ALS a well-known term. The more we know, the more we can eliminate the money pits selling false hope and the more we can do toward finding a cause and a cure.

Hope For Joy - Auction for ALS

2011-10-11T10:32:00.000-06:00

Hope for Joy Auction for ALS Merchant Website

The Hope for Joy Auction for ALS is an ongoing auction and merchant website that offers business owners, retailers, artists and individuals the opportunity to showcase their business and pieces, sell their merchandise at a profit, market themselves through social media, associate themselves with a worthy cause, and most importantly, assist those living with ALS and their families.

The auction site will be promoted through traditional and social media, including radio, Facebook and google adwords. Merchants who are accepted will also be featured and will receive additional information so that they too can sure the auction through their media channels. This combined effort will support everyone involved. Individuals may also participate, as the site works very much like ebay. Auction items are posted, you set the duration and the reserve if desired, and hope your item will sell. It is designed to be as simple as possible.

How does it work?

As a business owner, merchant or artist, you may email cureals@hopeforjoy.ca to request a "Store" through the auction website.
Once your store is approved, you feature your business, add your items, set a reserve (recommend cost plus 10 per cent) and activate what the terms should be. This includes shipping, insurance, etc.
There is not cost to register as either a buyer or a seller, nor is there a commitment to buy or sell.
The terms are listed on the auction website as there are nominal fees to highlight, add more than two images, etc. however, most listings will be at no charge to you.
When an item sells, 10% commission will be charged to the seller and 10% will be charged to the buyer.
The commission that will be donated to the ALS Society, with 60% going directly to the society, and 40% to support advertising and website administration.
Should you wish further exposure, banners are available for a fee and may be purchase by week or by month based on availability
Sellers are responsible for ensuring that buyers needs are met and items are as described, just as you would expect from ebay and other auction websites
If you are an individual - Hope for Joy works very much like ebay, without the cost of listing and with the commissions donated as above

Why Sell your Merchandise or Art through Hope for Joy?

Hope for Joy Auction for ALS will support the auction through social media and traditional media, as well as leverage yours and others' social media audience. As a result, featured business' will have access to visibility AND a positive association in the community. The auction is under the management of Jodi Morel of J.A.Morel Media, with 20 years of experience in business, media and social media.
Unlike sales in store, items are not "devalued" by a decrease in price. Instead there is an understanding that demand and interest drive the price and that it is in support of a charitable cause
As a merchant or artist, you are not committed to a long term contract or cost (aside from optional features) with the posting of your items. Click here to view site fees.

To view the auction which will be live in November, please go to: Hope for Joy Auction for ALS

Hope For Joy - Auction for ALS

Hope for Joy

Hope for Joy was created in memory of Joy Styles, who was diagnosed with ALS (Lou Gehrig's) in 2009 and passed over on July 1st, 2011.

ALS is a devastating disease attacking the nervous system, shutting down the body so that you can no longer move, eat, speak, and eventually, breathe.

ALS can strike anyone at any time, and it does not discriminate between those who apparently live a healthy lifestyle and those who may not.

It is a painful, costly struggle for both the person with the disease and their families. At this time there is no known cause or cure.

Hope for Joy Auction for ALS is an ongoing auction that is much like eBay in that it allows both business and individuals to buy and sell items either by auction, or at listed price.

Unlike eBay, merchants and artists are hand selected and the commissions from the website are to be dedicated to the ALS Society and to further promoting the site, raising awareness and funds for ALS.

The ALS Society of Alberta is a local society associated with ALS Canada whose focus is on the day to day needs of those who are living with ALS.

My role is to manage the advertising and ensure that the auction is up to date and running well.

My time is as a volunteer and all proceeds that do not go toward ALS will go toward advertising.

I hope to have the site self-sustaining in the future, however, this venture is by no means intended to be a profitable venture.

The goal is to help those who have this disease as they have limited resources, and very often, it is the bread winner who is diagnosed and unable to work.

Unlike cancer and other well known causes, ALS does not offer hope as their are no survivors. I would love to help change that, and I hope you will help as well through these types of efforts and raising awareness.

Thank you for your support and helping to raise awareness of this terrible disease.

Joy's Eulogy

2011-07-28T12:01:00.000-06:00

I wasn't going to post the eulogy. I thought it might be too personal. However, many of Joy's friends and distant family were unable to attend the service, and Carl asked that we share the eulogy for those who could not be there.

To Joy.

When Maureen and I were asked to write a eulogy for Joy, we knew it would be a daunting task. It is not for lack, as there are thousands of stories and thousands of memories that bring both loud laughter and the occasional tear. What is so difficult is trying to take all that was Joy and put it to words as that is as easy as holding the sun in your hands so that you might save it for a rainy day.

It cannot be done, and yet, we came together, Mo and I, and have tried to do our best.

Joy is the youngest of four children: Bruce, Lorraine, Mike and Joy - and they will tell you that because she was the youngest, she “always got her way".

However, as I have come to know her, I suspect that getting her way had more to do with her enormous blue eyes, shocking deep voice and sheer determination than with her being the baby.

Joy respected her mother, Opal and loved her father, Martin, more than you can imagine. Like Joy, Opal was a rock and a force to be reckoned with and her father was gentle with a deep, rumble of a voice. Joy struggled a bit with her relationship with her father as he had begun to show the symptoms of Alzheimer’s when Joy was still quite young. For this reason, she would say that she didn’t get to know her father as well as she would have liked, and I am sure this affected her view of relationships at an early age. She certainly took nothing and no one for granted.

It is because of my father, her Uncle George, and her mother, my Aunt Opal that Joy and I came to be roommates and friends. At the time, I was 20 and she was 31, I was starting college and she was recently widowed.

Neither one of us wanted a roommate, but Joy got her determination from her mother, and I got mine from my father...so once our parents had decided that we needed each other, we didn’t have a choice.

My first meeting with Joy was what the two of us liked to call "the interview". Her in a fuchsia pink Alfred Sung suit and a shoulder length bob, me in ripped jeans, a botched perm and 80's blue eye makeup. I cringed as this powerhouse of a woman sized me up. Then the interview began:

· She said she liked to clean

· I said I liked to cook

· She had a cat but it was "nice"

· I smoked "occasionally"

As Joy would later say, “we both lied through our teeth.”

Joy and I were roommates for just about seven years, and in that time, we never owned a vacuum cleaner.

The cat, "Ball" shredded the carpet, shed over every thing and scarred both Joy and I on numerous occasions.

I smoked a pack a day, and the extent of my cooking was reheating take out.

The restaurant, Cannery Row became our second home. After my first year, Joy was accepted into Mount Royal University for her Business Degree and all at once, we were both students. One night, we two starving students looked earnestly at one another over a blackened snapper, jambalaya, plate of malapeque oysters and a chilled bottle of white wine and said, “we should try to budget…maybe cut down on eating at Cannery Row”

After much painful deliberation, we determined, “no more than three days a week at Cannery”…a pledge that we never kept.

If we weren’t at Cannery Row, we would order in, and one of our favorites was nachos.

For the record, yes you can order in nachos…

One night, our nachos arrived while I was on the phone. Joy held up the Styrofoam container and asked, should I put it in the microwave?

I paused and responded, “no, the microwave is too hot, the Styrofoam will melt…wait until I get off the phone and I will take care of it” (after all, I was the cook.)

15 minutes later, I hung up the phone and went into the kitchen. “Where are the nachos?” I asked.

“In the oven” she responded cheerfully.

She had heated the oven to 350 degrees and the nachos were reduced to a ball of melted Styrofoam and crispy cheese.

The first person I met through Joy was Mo. Maureen was there when I moved my furniture into our shared apartment and she helped calm Joy through the flurry of my well meaning but sometimes neurotic friend and inexperienced movers.

Mo and Joy were and always will be “Mojo” and Joy was often away with Mo doing football picks, which I never fully understood. If we had been a married couple instead of roommates, I would have suspected an affair, as the “picks” seemed to go on and on indefinitely. Mo and Joy continued their friendship through football and beyond, as they trained together in recent years to run in half marathons, and Joy successfully completing three half marathons – two in Calgary and one in Sanfransisco, of which, two were the Mojo team.

When I first moved in with Joy, she was working at the Blackfoot Inn and I came to know most everyone, and they came to know me as the “crazy cousin”.

Joy was determined at an early age that she would be the General Manager of a hotel by the time she was 50. When she hit a glass ceiling in her early thirties, she did not stumble, but returned to college and received honors. Her wish was for her mom to see her graduate from college, but one lovely autumn day, while driving in the country to enjoy the fall colors, five members of our family, including aunt Opal, perished in a car accident.

In three short years, Joy had lost her husband, her father to Alzheimer’s and her mother in a tragic car accident. We shared many tears in those years, and Joy with each tragedy she would say, “if one more person dies in my life, I wont be able to take it,” and yet, she carried on stronger with each loss.

She would also say to me, “next year will be a better year” and eventually, her wish came true.

Following graduation and a position at the Coast Plaza hotel, in 1997, Joy went to work at Three Sisters Resort.

It was here that she met Carl. She had had a crush on Carl from the moment they met, and I recall the day she walked me through the office and shyly introduced me to him, knowing I knew how she felt about this dark man with a quirky smile. It was a few months before the two began to date and the following year, I lost my roommate and Carl found his soul mate.

Joy also volunteered with the Children’s Make a Wish foundation, and each fall she would travel with the children to Disney Land. She loved the children and she loved to see the joy on their faces.

An opportunity arose at the Blackfoot Inn, and Joy returned as Director of sales, and then was promoted to Assistant General Manager. A few years later, she finally got her wish: she became the General Manager of the Hilton Garden Inn and before she turned 50. Over the years, her hotel family has been her second family. Joy does not take her relationships lightly, and if you are her friend, you are her friend forever. She would not judge and she did not hold a grudge. All of you, who knew her, knew her as a person who greeted you with a hug and a smile that started in her eyes and ended in her heart.

I would be remiss if I did not mention the girls weekend girls, as they have been a large part of Joy’s life for many years. She and I had been living together a year, I believe, when she embarked on the first girls weekend, and she had always been tight-lipped about the adventures they shared. Wonderful ladies who continue to support one another through life’s challenges as well as enjoy their time together on their planned getaways. When I would ask about the adventures, the uniform response was and still is, “what happens on girls weekend, stays on girls weekend.”

As many may already know, Joy had another dream – the dream of working and living in Mexico, and when she was diagnosed with ALS, her tearful words to Carl were, “Now we will never go to Mexico.”

Carl promised her they would go, and go they did. After jumping from a plane, flying through the Grand Canyon in a helicopter, spending a month in Australia with her dear friend since high school, Ruth, Joy, Carl, Gill and Lauren moved to Mexico.

This was a challenging yet magical period for both Joy and Carl as their relationship grew and evolved. In November of 2010, they were married on the beach with friends and family present, and they shared their love for each other with all of us on that day.

In March, Joy’s health and her desire to be closer to friends and family brought her home. We are blessed and fortunate to have had the time that we had with Joy, and she will forever be in our hearts and on our mind.

For me, I will always have the memories:

Driving across British Columbia and sleeping in the back of the pick-up truck – and there are too many stories on that trip alone than I can share here today

Or climbing the trusses of the Broadway Bridge while singing “Stand by me” then watching the sunrise while the North Saskatchewan River rushed by on either side, talking about life and sharing a tear or two.

Long nights in our living room, solving the problems of the world…and there were many

Things to forever remember Joy for:

· A laugh that would rise and fall like water

· Big reds and Cloudy Bay wine

· Taking off her shoes and dancing in fountains

· Grace was not her middle name, but Joy was graceful

· Sitting in her housecoat drinking coffee in the morning before anyone else was awake

· Never judge

· When someone does something nice, always say thank you

· Live life large

· A thousand and one “I love you’s”

· Big blue eyes that sparkles when she spoke

· Talking with her hands…always

For myself, Joy and I had many moments and memories, and so much of her is with me. My sayings, my beliefs, my understanding and my view of the world have been shaped by my experience with Joy.

Like me, I believe that every person in this room shares a bit of Joy, and through her love and lack of judgment, her sincerity and her laughter, her beliefs and her strength, she has given each of us a gift.

We can choose to grieve our loss or we can celebrate her life in the way she would have wanted.

Starting this day, we can choose to live life large, always say I love you, avoid judgment, don’t change who you are and don’t try to change others, accept people for their differences and help when ever needed. Be Joyous and be Joyful.

Thank you, Joy.

In Dreams

2011-07-25T16:26:00.000-06:00

In dreams we touch, in dreams we speak, in dreams there is forever
lost in dreams, the memories of time we spent together.
Days have passed and you are gone but some things yet remain:
thoughts of you, the way it was, and missing you again

Such a fool to tell myself that time would be so kind,
to fade the pages of the past, release you from my mind.
So long my friend, until the night, when once again we meet,
dancing through the starry skies, if only in my dreams

Joy, Hope for Joy and ongoing updates

2011-06-23T12:32:00.003-06:00

Recently there has been some concern about what should and would be posted over the internet regarding Joy's health and current state. The website, the blog and Facebook page were created for Joy by her request as she felt it was the most efficient way to keep all of her friends and family informed of her adventures and her health. In more recent months, her health has declined and the news has been less frequent and less positive.

It is important that people understand that as Joy's primary caregiver, Carl is focused on her care which is 24/7. He is exhausted and stressed by emotions, as you might imagine, and it is difficult for him to find the time to address everyone's emails and calls...and yet he does. Please understand that this is not easy for him. Facebook is one way to try to alleviate this by sharing general updates and answering general questions and is not here to sensationalize or create undue stress by sharing information that is as difficult to post as it is to receive.

Joy has asked that we continue to share updates or changes, however infrequent, general and brief they may be. If you prefer not to receive information in this way, you may wish to remove updates from your thread and that is completely understandable. One suggestion that may ease Carl's email load (I know he doesn't mind, but our goal is to make his task as caregiver easier) might be to make contact with those who you know and trust and who have visited Joy when inquiring about her status and arrange your visits with Carl directly as he coordinates the times around volunteers, other visitors and Joy's need for rest.

It is so important to support both Carl and Joy at every step of the way, and to know that Carl is fulfilling Joy's wishes as best as he can. This is a trying time for everyone and it is important to check your emotions at the door, be patient and focus on your love for Joy and support for Carl and the family, knowing that she wants it that way.

We are all trying to do our best at a very difficult time so please be kind, loving and patient.
Jodi

A Poem for Joy

2011-06-16T21:20:00.002-06:00

Almost 20 years ago, I wrote a poem and I gave it to Joy. It resonated with her, so I drew a pastel sky and I framed it for her as a gift for her from me. When I went to see her at her sisters home, just a month ago, I saw that she had brought it with her and had hung it on the wall. It read:

Once I walked in darkness,
the pain within my heart
blinded by the bitter guilt
which tore my life apart

once I walked in loneliness
no one to hold my hand
no one to guide me down that road
no one to understand

once I walked in bitterness
for all the truths untold
for all the lies they gave to me
far more than I could hold

but then I found a giving soul
who would not steer me wrong
who taught me how to carry on
who showed me to be strong

Someone who had rose above
a deep and troubled sea
and when I looked into her eyes
I saw someone was me

It holds true today just as it did so many years ago.

I love you Joy.

Starz Movie

2011-04-19T19:42:00.000-06:00

Canary in the Coal Mine

2011-03-14T20:20:00.016-06:00

I have been thinking about this for some time now, and in light of the recent tragedy that continues to unfold in Japan, it is ever more top of my mind. With everything happening in our world, why should anyone who is unaffected by ALS, care about ALS? I care, but prior to Joy's diagnosis, I was like most: unaware, distracted and well, indifferent. Most of those who follow Hope for Joy and other ALS resources are either friends of Joy, or have friends and loved ones who suffer from the disease.

The rest of the world... not so much. They will probably never read this.

If you go to my website (http://www.jamorel.com/) you will find a discussion board about food and the environment, and that is why I think people should care. Prior to Joy's diagnosis, I read less about such things and ignored what I did read. I am a farm girl and have been raised to maintain a thick skin around farming practices and a healthy distrust toward activism in general.

ALS caused me to read.

Did you know that the US Government now compensates war veterans who are diagnosed with ALS? They do not state why there is a relationship, but they admit that there is one...and if there was ever any question, they compensate for it. I read a report today that finds that a strong relationship with Gulf War veterans (not previous or past conflicts) and ALS. That is remarkable. War Veterans and ALS article

Did you know that people who work in agriculture have a higher incidence of ALS? They do... but no one is able (or willing) to pinpoint a cause. ALS and occupational chemicals

Did you know that smoking is linked to ALS? Research indicates that it is...but again, I don't see that included in the warning messages on the front of a cigarette package. ALS and smoking

Did you know that according to the World Health Organization, neurodegenerative diseases are predicted to surpass cancer as the second leading cause of death in Canada by 2040?

Why should people care about ALS?

Because it is a symptom of something much, much bigger.
It is part of the food we eat, the water we drink and the air we breathe. There is very strong evidence that it is environmental. It is the canary in the coal mine that we choose to ignore.

The disasters happening around the world are not exclusive. As nuclear reactors fail and radiation leaks, a population is exposed to something possibly more deadly than the tsunami that began it all. Newscasts report that those of us in North America are safe from nuclear exposure, but if there is one thing I know without a doubt, it is nothing is exclusive.

Nothing.

My condolences and prayers for those suffering due to recent events, and I encourage everyone to consider that we are in a global community.

If you want links to any of the articles and information above, please comment and I will be happy to provide them.

Just thinking.

2011-01-29T15:16:00.005-07:00

I haven't written in a while, and the truth is, I avoid it. As time passes, Joy, hope and ALS become an ever more difficult topic to discuss. Early on I had a fighters spirit; an overwhelming will to overcome the odds and beat this thing, but with each day, that changes. It does not go away, it simply morphs into an understanding that not all things can be won with a fight. There are situations in life that call for grace and acceptance of the limitations that come with being a mere mortal.

Joy is coming home between March and May although we do not know the exact date. When I saw her in the fall, her words were slow but still coherent. Now her speech is almost entirely gone. I have always known Joy for her voice. Joy has a remarkable voice and anyone who has met her will say, "Is that the lady with the really big voice?" Yes, that is Joy. A slender woman with pale blonde hair and large, sparkling blue eyes who could stop a room with her laugh. Her voice was uncharacteristically deep and her laugh was just as large, reaching highs and lows as she would throw her head back and let the sound fill a room. She was her name...she is her name, but ALS has taken her voice. Her laugh.

I was at my parent’s farm last weekend, and I listened for messages on the answering machine. To my surprise, I heard Joy's voice and my heart stopped. It was her, as I remember, the voice I know so well, locked in memory... as clear as though she were standing next to me, and there it was, preserved on my parent's machine. I suppose they had thought to save the message, or perhaps they merely forgot to erase it, but I only listened to it once and then sat alone in silence.

To be honest, I am not ready for the future and I try not to think about it. When people ask, “How is Joy?” I answer with facts, quite clinically, as it is easier not to delve deeper. Knowing Joy, she is doing the same, avoiding the conversations about feelings and fear. It is better not to think too much.
Jodi

Food, Inc. - The Passionate Eye | CBC News Network

2011-01-03T21:46:00.000-07:00

Food, Inc. - The Passionate Eye CBC News Network

http://parisimperfect.wordpress.com/2010/12/20/happy-holidays-als-awareness/

2010-12-20T21:46:00.002-07:00

Happy Holidays/ALS Awareness

http://parisimperfect.wordpress.com/2010/12/20/happy-holidays-als-awareness/

21st Century Snake Oil, Part 2

2010-09-12T22:07:00.000-06:00

A continuation of the 60 Minute episode that previously aired exposing fraudulant business taking advantage of those with ALS - 21st Century Snake Oil, Part 2

The ironman’s disease - The Boston Globe

2010-08-22T22:55:00.000-06:00

The ironman’s disease - The Boston Globe

A letter from Joy

2010-08-18T12:16:00.001-06:00

To all my friends and family who have been so kind and giving:

It has been a year since my diagnoses of ALS so I thought an update was appropriate.
It has been a busy, fun, challenging, scary, loving and learning kind of year. I/we have traveled a lot.

Denver - to watch my beloved Pittsburgh Steelers beat Denver! Thank you to everyone who made this possible. Thank you for Glen & Frank for coming with us and making it special!
Las Vegas & the Grand Canyon - fun with Jodi on her 40th - Vegas will never be the same and the helicopter ride over the Grand Canyon amazing. Thank you Jodi for everything you do!
Sydney, Coffs Harbor and Brisbane, Australia - to see one of my dearest best friends of 43 years - Ruth and her wonderful daughter Dallas. Tony (husband) and Andrew (son) were great fun plus great cooks! Hunter Valley - wine & food WOW
Cairns and the Great Barrier Reef with Carl - awe-inspiring - snorkeling on the Great Barrier Reef and then taking a helicopter to take it all in overhead ... another of Nature's great gifts!
San Francisco, Seattle, San Diego and Rosarito in Baja Mexico - medical, relaxing and exploring. God bless Sanoviv Medical Institute in Mexico ... one of the most special places on earth!
Veracruz, Mexico - driving 17 hours across 5 Mexican States to Veracruz with Gill, Lauren and Carl. What a trip...thank you all of you!
Columbia Falls, Montana - Girl's weekend...enough said!

Many know that Carl & I split our time between Calgary and Cancun. Love the warm weather and learning a new culture. Life is an adventure! Living in the Hotel Zone next to the Caribbean ... and then, after some misadventure with a particular scorpion, moved to El Centro in Cancun.

Miss family, friends and many daily "Canadian" things ... you learn to appreciate everything more when you leave home for longer periods. Yet loving the new experiences that living in Mexico offers!

The BIG news: Carl and I are finally old enough to get married! Nov 24 in the Mayan Riviera to be exact! Carl is amazing and the light of my life. Plus it is a good reason to celebrate!

My health: I have been diagnosed with Lyme disease as well. It can mirror ALS, co-exist with ALS and/or aggravate ALS. There is much discussion/debate about Lyme and its existence, treatment etc. I am fighting it as if it is a foe that can be beaten! Treatment is antibiotics, diet and supplements. Leaves me tired but good ... always learning about my body.

I most hate losing my independence ... yet still I have flown on my own back to Canada through Mexico City ... great fun! I can still walk with effort and a walker. Wheelchair is a necessity when going out. I sound like I am drunk when I talk (or more blond if you listen to Carl) ...you might think that is the reason, but not so ... LOL!

Carl, Lauren & Gill are wonderful at assisting me with many day-to-day things. I am blessed and thankful to have all of them with me. My breathing is strong ... better than a healthy female my age, go figure! And get this, I have been told to gain weight ... never thought I would hear those words at 51! LOL!

I love to get sun and try to get my exercise while in the pool ... and to take in the amazing Caribbean whenever I can. And importantly, I am not in any pain ... so I feel blessed!!

What I have learned:

Prayer is amazing.
Family & friends are wonderful beyond words Thank you all of you! Keep yours close!
Each day can be a giggle so celebrate!
ALS impacts too many people...why is still not well known ... and no known cure in sight?
Too much argument about Lyme Disease...it's REAL, so medical community move on...
Never tangle with a scorpion in the shower it can cause stitches...yes I had 7 in my head
Keep learning
Keep laughing
People never cease to amaze me with kindness and love
I love hugs and kisses from strangers....yes that shouldn't surprise anyone
Mexico is an amazing combination of contradiction.
Meditation is not stupid
The world is not set up for wheel chairs but getting better ... can you say "aging population"
Celebrate small accomplishments.
New babies in my family are a gift from God
Stress is carried and manifests differently in everyone ... work on getting rid of it ...exercise, meditate, pray, yell whatever.
Live ... Laugh ... Love

There is so much more but enough for now. Thank you for everyone's love and support. Keep prayers, hugs, emails, calls etc coming.

.Pool time...

Besos y Abrazos! (Kisses and Hugs)

Joy

Halifax woman bikes 6,000 km for dad and ALS - News - The Journal Pioneer

2010-08-15T23:03:00.000-06:00

Halifax woman bikes 6,000 km for dad and ALS - News - The Journal Pioneer

ALS and SSDI - ALS/MND Support Group Forums

2010-07-28T22:16:00.000-06:00

ALS and SSDI - ALS/MND Support Group Forums

I want to write about Lee

2010-04-21T22:40:00.005-06:00

I would like to introduce you to Lee Abramson: an artist and entrepreneur who has been diagnosed with ALS. Lee lives in East Lansing, MI and I met Lee because of ALS. I have read his website, listened to his music and even discovered the background of his venture into the online porkrind business.

Lee was diagnosed with ALS in February of 2005 and has lost almost all of his mobility. He has overcome so many hurdles and continues to make the most of his life and his abilities, not the least of which is his music, which he continues to produce with one finger.

Please take the time to go to his website and listen to his music as it is truly remarkable. Lee is an inspiration to all of us.

When I asked Lee what gave him hope, he replied,
"every time a fan tells me that I am an inspiration". Please visit, read and give Lee hope.

Lee's website: click here

Lee's Facebook page:click here

Dear Friends:A letter written by Kay Marie, who's husband was diagnosed with ALS

2010-04-19T10:45:00.002-06:00

Dear Friends, Now that we have had the opportunity to share the changes in our lives with all of our immediate family, it is time to share with you. Wayne has been diagnosed with Bulbar Onset ALS on 13 July 2009. Some of you may know this as Lou Gehrig's Disease. Please read my note, include us in your prayers and pray for a miracle.

My sweet "Web" has been diagnosed with Bulbar Onset ALS. [A simple and generalized description] Amyotrophic Lateral Sclerosis (ALS), or Lou Gehrig’s Disease, is a progressive neurodegenerative disease that causes its victims to become completely paralyzed, gradually stealing their ability to move any of their limbs. The disease affects motor neurons in the brain and spinal cord. When the motor neurons die, a patient’s muscles waste away. The patient is robbed of the ability to walk, speak, eat, and eventually breathe. Upon diagnosis patients are given only two to five years to live. There is no cure for ALS. There are currently 35,000 victims of ALS living in the USA. A victim of ALS dies every 90 minutes. Every 90 minutes someone is newly diagnosised with ALS. I respectfully request that you join hands and hearts with Web, Matthew and I as we live the present moments with joy on this journey of life!. If you believe in a higher power, we respectfully and with sincere appreciation request that you pray for a cure for the 35,000 ALS victims currently alive in the USA and the countless others in the World. Please do it this moment. I absolutely believe in Miracles, fairy dust, ruby red slippers [I actually own a pair and a crown in the shape of the Golden Gate Bridge Thanks to Brent!] and that the Universe unfolds as it should! ALS is not robbing us of our lives. ALS has given us our lives. The gift of ALS for us is that we have been given the opportunity to soulfully and completely understand that all any of us have is this very moment. What has happened in the Past or what may happen in the Future is so unimportant. That is our gift to you. LIVE EACH MOMENT WITH JOY! We have all been soul blessed. This moment in time is for healing for all of us.

I also respectfully request that each of you become the voice, arms and legs for the victims of ALS by becoming advocates for the victims of ALS. Join your local Chapter or Association for Muscular Dystrophy and ALS. Organize a Community project or join a ALS Walk to raise FUNDS for RESEARCH. Phone, write or email your Politicians, the Leaders in your Community and LOUDLY DEMAND because you have a voice that funds be made available for research and for a cure for this horrific disease. Join online ALS MDA forums. DEMAND reform and accountability for health care and for Social Security! Are you aware that the ONLY medication FDA approved and available since 1996 is Rilutek, it prolongs life by 3 months and it costs $1000/month! Do you know that even though Web is immediately approved for Social Security Disability that we still need to wait for 5 months to receive payments of HIS MONEY and that there are no back payments for the waiting time...Doesn't that make you feel outraged?! Here is a passage that says it like it is,
"Because people die from this disease, because there is no cure, because there is no long term life extending treatment, there are no survivors. Let me repeat that, no one survives ALS. The myth continues because there are no survivors to shout from the rooftops how horrible this disease is, and why we need to rally around, raise money, and find a stinking cure. We need to make aware that this disease can strike anyone, anywhere, at anytime in their life. We need to make aware that this disease is not just “something” named after baseball great Lou Gehrig. We need to make aware that this disease strikes real people; moms, dads, grandparents, sisters, brothers, aunts, uncles, nephews, nieces, baseball players, boxers, football players, soccer players, golfers and veterans. "

I found the National Institutes of Health spends billions of dollars for research -- the vast majority targeting preventable, treatable and non-life threatening diseases. The sample below provides perspective on how much money the NIH was willing to spend in 2008 to prevent each death from these diseases: HIV/AIDS, $198,263; substance abuse, $162,353; sexually transmitted diseases, $40,833; ALS, $7,167. I ask you to look carefully at these statistics and question why there is not significant funding for ALS. The truth is that at this point, the Drug Companies will not make MONEY off of ALS victims. Oh, it is so true that money is the root of all evil! Please assist me in the process of increasing public awareness for this disease.

If hearing this moves you to contact us, we would LOVE to hear from you. Not talking about it doesn't make it go away. Please do not feel uncomfortable. There are no words that make it better but hearing "I'm sorry and what can I do to help" is such a comfort. We need all the support, encouragement and help that anyone can offer! :]

Today the sun is shining in the brilliant blue sky in South Dakota! Today my husband went fishing and before he left, he kissed me and said "I love you". Today we are soul blessed and fortunate. Life is good.
With Love,
Kay Marie

Be the change you wish to see in the world.

Snake Oil Salesman - a 60-Minute interview about predators and ALS Part 1

2010-04-18T21:27:00.003-06:00

Watch CBS News Videos Online

Snake Oil Salesman - a 60-Minute interview about predators and ALS Part 2

2010-04-18T20:51:00.001-06:00

Watch CBS News Videos Online

We the Sheeple: look up!

2010-04-05T11:10:00.013-06:00

Since I created Hope for Joy, I have had the good fortune of meeting hundreds of inspirational individuals whose lives have been touched by ALS. I have also read and learned so much of how little is known about the disease that I find I greet each day with an underlying sense of frustration.

You see, like many of you, a year ago I knew nothing of ALS and was quite content to blow over advertisments and PSA's about it. With thousands of charities with equally pressing needs, my filter system was on auto-pilot; sorting through the relevant and the most dire needs, ignoring the rest. I ignored ALS.

I ignored it, that is, until Joy was diagnosed in August of 2009. Since that time, I have searched for answers and read article after article about the disease, as well as reached out to others with ALS in hopes of understanding and perhaps finding answers. Today I want to reach out to those of you who may be as I was a year ago, busy and detached, and give you a little nudge.

The first thing you need to know is that Hope for Joy is about building a community around ALS and about informing those who, like me, were unaware of the disease and its potential causes. I want to wake you from your peaceful slumber. What slumber, you may ask? The sheep-ple slumber: a blissful lolling about the pasture, unawares-of-the-wolf type of slumber and the "thank God its not me" type of slumber. The dog is barking and we need to wake up. Are you ready for a rude awakening? According to the World Health Organization, neurodegenerative diseases are predicted to surpass cancer as the second leading cause of death in Canada by 2040. The numbers are on the rise, no one knows why and that is frightening.

To further illustrate my point, lets go back in time to 2008 when BPA's in plastic was an unknown, academic acronym. Baby bottles, cups, water bottles, linings of cans and children's toys were made with plastic containing BPA and it was quite acceptable. It was, that is until a study was released that indicated that it could be cancer-causing and accelerated / altered hormones in children. Overnight there was a furvor of panic as landfills brimmed with unwanted plastic demons and the masses shouted in anger at the health and safety system that had somehow let them down. Since that time, BPA plastics have been banned and the panic has subsided, but we have not forgotten. Ignorence is not bliss.

How do BPA's and plastic relate to ALS? This is the waking-up part of the story. ALS can affect anyone, including you or someone you love. What studies have indicated is that ALS is most likely caused by environmental factors. In fact, less than ten percent of those with ALS have a famililial or hereditary link to the disease, the rest have absolutely no known history. Many, including my friend Joy, were athletic and healthy, playing sports, running marathons and leading otherwise healthy lives.

The real problem is no one is sure what those environmental factors are. There are tests in communities with unusually high occurances of the disease, but nothing conclusive in the findings. Pesticides, herbicides and metals are suspect, but the findings in these areas are vague at best. The American Government has gone as far as to compensate war veterans both past and present who have contracted ALS, admitting there is a link between service and the disease, but what the link is remains a mystery.

The sad reality is, that like BPA's in plastics, we are very possibly introducing ALS causing factors into our lives and our families lives every day and are completely unaware of it. How futile and frustrating it would be to know that while my son has avoided BPA's, he might contract ALS in later years due to some other chemical that I simply did not know about.

I am going to ask you to pay attention and consider not what we know about ALS, but what we don't know. After all, we know it is a terrible disease, but what we don't know is what is causing it or why, and that is frightening. Like BPA's and cancer, ALS may be avoidable and until we know what the triggers are, we are all in danger of infecting not only ourselves, but the ones we love most.

2010-04-04T22:16:00.001-06:00

Months to Live

Fighting for a Last Chance at Life

By AMY HARMON

Published: May 17, 2009 - The New York Times

A family’s campaign for access to an unproven drug highlights the challenges terminally ill patients face in the search for treatment.
Fighting for a Last Chance at Life - click to view article

My friend, Barry... a fellow Albertan who has ALS

2010-03-29T10:59:00.003-06:00

I met Barry through the ALS Forums, and have come to call him a friend and cohort in this fight against ALS. When I first began to talk with Barry, I was taken by his easy nature and clever wit, noticing immediately that he was a man who never has a negative word to say. It wasn't until many conversations via the Forum and through Facebook that I realized that in fact, Barry is unable to speak.
He has Bulbar onset ALS, which has robbed him of his voice and his ability to eat.

Below is a brief introduction to Barry and his family as well as links to his speech in Edmonton and his website, "Barry's Brigade"

Hello, my name is Barry and I live in Hinton, Alberta, Canada. My favourite hobbies before ALS were hiking and hunting. My mountain climbing was pretty much just for the fun of climbing and most of my ascents have been in the Rockies in Banff and Jasper National Park.

I am married to Beth, who is a wildlife biologist and have a son, Andrew, who is studying art and Japanese at U of Victoria. My family is a great help to me, and even though I am still auto-mobile, my decreased ability to do things affects them very much. We were planning climbing and hiking trips as a family when I was diagnosed, and now that is done as well.

What I miss most is being able to eat and speak

What gives me hope is that a cause and cure will be found

Barry is participating in the Walk for ALS on June 12th, 2010. Please go to his website: Barry's Brigade to learn more or to sponsor. You may also view Barry speaking at the Edmonton ALS Walk luncheon. Barry's Speech
You may learn more about Barry through the website, the speech link above or go to the ALS Forums to meet Barry and others who are affected ALS. ALS Forum Website: a place to meet and talk with others who are affected by ALS

A short, simple poll

2010-03-28T16:12:00.000-06:00

I created this poll to determine the influence of ALS on those who belong to the Hope for Joy community and / or are viewing my blog. Please submit your answer - there are no tracking devices, you do not need to be a member of a community nor do you need to submit personal information. Thank you. http://twtpoll.com/0fyeqz

“Do Not Lose Heart” by Clarissa Pinkola-Estes

2010-03-28T15:57:00.003-06:00

OURS IS NOT THE TASK of fixing the entire world all at once, but of stretching out to mend the part of the world that is within our reach. Any small, calm thing that one soul can do to help another soul, to assist some portion of this poor suffering world, will help immensely. It is not given to us to know which acts or by whom, will cause the critical mass to tip toward an enduring good.

What is needed for dramatic change is an accumulation of acts, adding, adding to, adding more, continuing. We know that it does not take “everyone on Earth” to bring justice and peace, but only a small, determined group who will not give up during the first, second, or hundredth gale. One of the most calming and powerful actions you can do to intervene in a stormy world is to stand up and show your soul.

Soul on deck shines like gold in dark times. The light of the soul throws sparks, can send up flares, builds signal fires, causes proper matters to catch fire. To display the lantern of soul in shadowy times like these—to be fierce and to show mercy toward others, both, are acts of immense bravery and greatest necessity. Struggling souls catch light from other souls who are fully lit and willing to show it.

It is not about ALS - it is about people

2010-03-24T13:59:00.008-06:00

It is a well known fact that if you know someone who has has an illness or needs help, you are more inclined to listen, care and lend a hand when necessary. Today I would like to begin to introduce you to individuals like you and me, who have been diagnosed with ALS. These are brief introductions that will allow you to meet and learn more about the people behind the disease.

Web: diagnosed with ALS in 2009
I met Web's wife, Kay Marie through the ALS Forums website, and we immediately bonded. Kay Marie cares for her husband, who was diagnosed with ALS in July of 2009. Parents and grandparents, Web and Kay Marie have held together through the trials of the disease and continue to share so much love and compassion for eachother. Web was willing to share a few details about his life before and with ALS below:

Web is from South Dakota/South Carolina and before ALS, he enjoyed fishing, woodworking, hunting and gardening. Today Web is most thankful for his wife, Kay Marie, and his family who love and support him through the challenges that change almost daily.

Of the things that Web experienced prior to ALS which he can no longer do, he misses speaking, kissing and eating the most.

What gives him hope through this terrible disease is that one day there may be a treatment and a cure for ALS. Web also believes when he passes from this life, there will be another life, and he will be with his family and loved ones again.

God bless you both,

Be the change you wish to see in the world.

Night - The New York Review of Books

2010-03-17T10:59:00.000-06:00

Night - The New York Review of Books

Local clinic uses stem cells to fight Lou Gehrig's disease

2010-03-17T10:46:00.001-06:00

Local clinic uses stem cells to fight Lou Gehrig's disease

Posted using ShareThis

ALS - How can we know WHY when we don't know WHO, WHAT or WHERE

2010-03-12T22:13:00.002-07:00

ALS is an orphan disease that has been overlooked by too many people for far too long. It is considered an orphan disease, and yet, no one really knows how many people have it. We need to know.

Few people realise that ALS can strike anyone and until we come up with a way of finding out who get's ALS, where they live, what they are exposed to and when they are exposed, we may never know the reason why. There is a great deal of data out there that suggests that ALS may be caused by environmental factors, things that can be avoided or eliminated from the market.

The US Government has gone so far as to compensate war veterans who contract ALS, admitting that there is an association with service and the disease. However, what the association is, be it metals or chemicals, is yet unknown. We need to know why in order to prevent the disease from happening in the first place.

You can help by signing this petition asking for action for a North American COLLABORATIVE DATABASE, which collects that data of those who have ALS. Sign this petition and help us find a cause so that we can find a cure.

Click here to sign the Twitition to help find the cause for ALS

How can I help?

2010-03-10T10:17:00.002-07:00

I am asking you to comment as to how I can help. Tell me what I can do for you and for those with ALS in the comments or send me an email. hopeforjoy1@gmail.com

A Documentary shows hope for a disease with no cure

2010-03-09T09:04:00.006-07:00

TO VIEW VIDEO PREVIEW-CLICK HERE

article below taken from the Victoria Advocate.com
Originally published March 8, 2010 at 8:56 a.m., updated March 8, 2010 at 8:55 a.m.

"Imagine waking up every day and losing the function of another muscle.
Amyotrophic lateral sclerosis patients face this fear daily. ALS is a degenerative motor neuron disease which slowly paralyzes the victim muscle by muscle. The disease becomes fatal when the diaphragm muscles cease to function. Once diagnosed, people are given three to five years to live.

Victorians facing this cruel fate are Craig Fox, Carolyn Shimek, and Bill Hassel. All in different stages of ALS, the patients constantly deal with loss and the new lives created by their disease.

Amazingly, they find ways to live with hope. They find ways to give back to the community, inspire their relatives and guide their children. And now their inspiring stories will be shared in a full-length documentary by filmmaker Drew Stewart."

A date for the premiere of the film in Victoria will be announced later. You will see the Foxes, the Shimeks, and the Hassels find hope in the darkness of ALS and discover the true meaning of life by living in the face of death."

The Five 'W's... with four missing: the challenge of ALS

2010-03-08T16:07:00.004-07:00

I received an email this week from a man named Tom. He wrote to tell me he was heartbroken as two of his dearest friends from college had been diagnosed with ALS: the first in 2006 and the other, only a week or so ago. He shared my feelings of anger and helplessness and it occurred to me that I should write about it as it is a common reaction to this dreadful disease.

The anger and helplessness run hand in hand and it is like no other disease I have encountered. The more people I meet, the more helpless I feel and the less answers I find, the more angry I become.

ALS is considered both rare and random, but in fact, it is neither. It becomes even more frustrating when you delve into this disease and realize that no one really knows how many people currently have ALS,or how many people die from it. It is insane to me that we still consider it rare or an "orphan" disease when in fact, we haven't the slightest clue. READ: . "Doesn't add up - lack of statistics for ALS"

There isn't a source where medical professionals can track past exposure or activities nor is there a resource for anyone who wants to learn more. The information is vague at best... non existant otherwise.

I am going to ask anyone and everyone reading this to help me by asking the question: where is this database, this resource, and if it is under development, why are we still waiting?

The one thing I have learned from my friends at the ALS Forum is that ALS requires a great deal of patience. The irony is that while it requires patience, it can't afford the time. The disease hits many so hard and so fast that every moment is the difference between life and death. Those with ALS can not wait ten years, five years, even two years. For many of them, a year or two is a lifetime... and we need this to happen now.

My Story of Hope

2010-03-03T13:10:00.027-07:00

I am going to tell you a story, or at least a small part of a story. I am going to tell you about my Uncle Carl. Unckie, as we knew him, was a tall, crusty character with a deep voice and drawl that reminded me of John Wayne.

He was my father’s brother and he had a room in our house and a chair at our dining room table during mealtimes. He was a bachelor who chose not to marry until he was in his 60’s, and when he finally did, it was to the widow woman who lived across the creek; a stone’s throw from our home.

Unckie was a bear of a man who would curse and growl at us. Oh how he would grumble and yell … “Varmints!” as we would run away in fits and giggles. We were always pulling pranks on Unckie and he was like the old dog who snarled at us like puppies, but would never bite.

Unckie liked to smoke... a lot, and unless he was sleeping, there would be a cigarette hanging from his lips. No one else in our family smoked, and his habit was a source of irritation as well as a brunt for pranks, for which we were endlessly devising new material.

We would take each cigarrette out of the pack and punch pin holes through the paper, or when I would roll his cigarettes, I would leave empty gaps mid-way down so that the cigarette would disintegrate into ashes in his lap while the unlit portion dangled from his mouth. My brothers were as bad, adding hot peppers, match heads and various other substances to the tobacco, then watch excitedly to see what might happen. Once they put a fire cracker inside, and although I didn't see the result, I certainly heard about it.

In 1997, Unckie was diagnosed with lung cancer. I had been calling the nurses from my office all morning and most of the afternoon on the day that his test results were due, but they could tell me nothing. We suspected cancer had not yet heard the "word". It was 4pm when I got the call, the nurse said, “the doctor will be in to see your dad (they never did figure out the relationship) between 4:30pm and 6pm and it isn’t good news. He shouldn’t be alone.”

I got off the phone and went to the human resources manager to tell her I would be leaving work early. I was an advertising manager for a man who was a beast and a tyrant, and leaving early could cost me my job, but I had to go. I went blindly to my car and I drove, talking to myself, fighting back tears and punching the palm of my hand against the steering wheel. “I can do this!” “I can be strong!” “Smile…. It’s okay... I can do this!”

I kept talking and driving the few short miles from my office to the Rocky View Hospital. I had been here a dozen times in the past two weeks, I knew my way, and yet I became confused. I missed a turn at the hospital and then another. I tried to circle back and missed that turn as well, and all the while my self talk was becoming a frantic rant.

“I can do this!!” I yelled as I pulled up in front of emergency, nowhere near where I needed to be. I stopped the car. I was crying uncontrollably and could no longer drive. Instead I punched the steering wheel with both hands and shouted to no one at the top of my lungs, “HELP ME!!!

Then I looked up.

In the sky directly before me, was a rainbow, the most brilliant rainbow you can imagine. It filled the sky from north to south and it radiated color and light with such intensity that I could feel it as much as I could see it. Somehow in my frenzy, I had failed to see it and yet there it was: immense and amazing! I sat there in my car, parked with the engine running in the middle of the road in front of emergency, and I just stared in awe. As I looked at this rainbow, I began to breathe and was filled with a sense of peace and hope. After a few minutes, I knew what I had to do and I knew I could do it. I calmly put the car in drive and followed the road back around to the parking garage.

Upstairs, Unckie was sitting up in his bed, the large windows of his room looking out over the eastern sky. He had seen the rainbow and when I entered the room, his face beamed. “Did you see that rainbow?! Wasn’t it something!?” I smiled and walked over to the edge of the bed. Outside the rainbow had all but disappeared, the last remnants of color faded but still visible at its very edges. “It sure was,” I answered, turning back to the man who, for the first time in days, was smiling.

My life changed on that day and I can’t explain it. I am not what you would consider to be a religious person, but that day I was given a gift. I was given the power and the faith to be the person I needed to be for someone who really needed me. I found a sense of purpose and hope that will never leave me. Call it coincidence, call it divine. Call it whatever you like. For me it was a moment that changed everything.
Jodi

"ALS - It's about loving someone"

2010-02-27T08:48:00.005-07:00

ALS - it's about loving someone is the slogan on the purple snap bracelet on my wrist. I read it at least twice a day and it causes me to pause and think. It is true, for those of us who are involved with ALS, it is inevitably because the disease has directly effected our lives in some way.

I have decided to add links to pages that have been created by other individuals, like me, who are working to create more awareness about ALS. These are not big business or profit motivated people, these are people who are working away in what ever spare hours they have, with what ever resources are available, with the hopes that something they do can make a difference in the world. Please take the time to visit their websites and learn their stories. More importantly, take the time to share this with others, so that more people can be aware not only of ALS but of the power of the individual who is motivated by love.

If you know of someone who should be included on the list below, please email me at hopeforjoy1@gmail.com and I will have a look and possibly share their story

Take care,
Jodi

Kinja Njilas who lost her mother to ALS, created this site to raise awareness about ALS:

Raising Awareness - My life with ALS - click here

Kinja also has this site which was designed to help children/teens of ALS:

Cick Fund 4 ALS - click here

Michelle Rozen in support of ALS Awareness:

Never Give Up - click here

Stuart Millheiser who formed ALS Guardian Angels, a Foundation dedicated to helping patients and their families live with ALS while maintaining the best quality of life possible.

ALS Guardian Angels - click here

MDA's Wings Over Wall Street - created by Toni Diamond and Warren Schiffer after Toni was diagnosed with ALS in 2000. "We at Wings will not stand idly by and let ALS devastate more lives. Please join us in funding research for effective treatments and for finding a cure"

MDA"s Wings Over Wall Street

Joel and his wife Christine created a site about their journey and Joel's experience with ALS. Diagnosed in 2005, Joel shares his experience and a positive outlook on life with ALS. "All I want to do is try to be a positive voice and to help PALS (person with ALS) and CALS (caregiver of someone with ALS).Living with ALS Let's get on with enjoying life as much as we can today!"

Life with ALS

Jen's Journey: a mom living with ALS. This is a beautiful, honest story that you simply must read.

Jen's Journey

ALS - Bugs, Weeds and War Veterans

2010-02-22T11:27:00.010-07:00

I will be the first to admit that I am not a scientist. I do not have a PhD and I haven't spent a good deal of time dissecting bio-matter, analyzing chromosomes, restructuring chemical bonds or determining toxicity.

I am just a person who has a friend who has been diagnosed with ALS, and I want to know why. Don't get me wrong, I am not one of those people who, when faced with a trial wants to find someone or something to blame. No, I really don't feel the need to blame anyone. I just want to know why.

Joy was running marathons until she felt a numbing in her leg that caused her to slow down. It was believed that the running had caused a pinched nerve, but we now know that the numbness was an early sign of the ALS. Joy also had a healthy diet, and like me, chose vegetables and lean proteins over fast-food and chips. Sure, in the years that we were roommates and students, we didn't always eat as we should, but we ate better than most. Considering lifestyle, there isn't anything glaringly obvious that would lead me to an understanding as to why Joy would have contracted this disorder. In the absense of the obvious, I have gone looking to other possiblities, reading studies and papers on ALS.

As I look into ALS I am discouraged and annoyed by the findings and the rapid back-tracking made by the Administration and scientific community. It is as though they are fishing for minnows, and as soon as one catches a whale, they cut the line and run for cover.

The research reports read like novels that build to a climax and then end abruptly, discarding the plot and purpose by simply stating, "more research is necessary". One thing that I have stumbled upon time and time again is a possible link between herbicides, pesticides and neurological disease. To me this makes some sense as Joy grew up in Olds, Alberta, which is surrounded by farm land. I should mention that a close family friend, Roy Shannon, also died of ALS almost two years ago, and as a farmer, he spend many hours in close contact to agriculture chemicals.

Therefore, I have chosen to read further on the topic, and this is what I have learned thus far... or at least, what has been committed to paper:

1. Herbicides such as 2-4D, which was used in Agent Orange in Vietnam, is the most widely used herbicide in North America. Read the following links from various sources as it is interesting if not frightening. I feel like a giant lab rat. In fact, of all of the papers, I found the following two most alarming:
http://www.flora.org/healthyottawa/2,4-D.htm

http://www.pan-uk.org/pestnews/Actives/24d.htm

2. US War Veterans are compensable for ALS... although it is determined that Agent Orange is not the sole cause. see:
http://veterans.vermont.gov/benefits/presumptives http://findarticles.com/p/articles/mi_m0LFT/is_1_44/ai_82609384/

3. Agriculture and Occupational Exposure causing ALS http://www.springerlink.com/content/pp9vt31v575m6695/ or http://aje.oxfordjournals.org/cgi/content/abstract/145/12/1076 . http://www3.interscience.wiley.com/journal/119339454/abstract

The following is taken from the book Veterans and Agent Orange: http://www.nap.edu/openbook.php?record_id=11242&page=420

Pesticide exposure has been associated with increased risk of ALS, including a twofold increased risk from long-term occupational exposure to pesticides (Deapen and Henderson, 1986), a threefold increased risk from exposure to agricultural chemical products (Savettieri et al., 1991), and a threefold increased risk from exposure to herbicides (McGuire et al., 1997), although none of those risk estimates was statistically significant.

A population-based case–control study demonstrated associations between exposure to agricultural chemical products and ALS in men, with a statistically significant 2.4-fold increased risk, a statistically significant trend by duration of exposure, and a 4.4-fold increased risk from heavy exposure in accidents or spills

There are studies that indicate a great number of ALS occurrences among soccer players, those working in agriculture and war veterans, but there doesn't seem to be any one analysis which will conclude, without a doubt, that a single factor is a likely cause. What concerns me is that there seems to be a connection with agriculture chemicals and yet a reluctance to commit to these findings.

Some provinces have moved to ban herbicides, but there is great debate over the issue. The following are articles regarding efforts to ban herbicides and the issues with economics and NAFTA agreements http://www.cbc.ca/canada/story/2008/10/22/quebec-pesticide.html http://www.panna.org/mag/spring2009/landscape-chemicals-banned-canada

As I had said earlier, I am not a chemist or a scientist nor am I an activist or environmentalist. I am simply someone who is looking for an answer but continues to uncover only more questions. However, I know the answer is out there and I believe that there is more conclusive evidence as to the cause of ALS than we are privy to. For now, I will just keep asking and searching, but I am becoming acutely aware of a system that is more about economics than about health, and that worries me.

Person with ALS On CBS Television Network Special - The ALS Association

2010-02-21T12:38:00.000-07:00

Person with ALS On CBS Television Network Special - The ALS Association

Facts You Should Know About ALS - The ALS Association

2010-02-20T10:16:00.000-07:00

Facts You Should Know About ALS - The ALS Association

From the outside looking in.

2010-02-19T11:44:00.003-07:00

I am on the outside looking in.

I read the stories on the ALS Forum and blogs like the one posted earlier, and I feel paralysed. I cry and I want so desperately to make these people's lives better, but I am paralysed.
I am on the outside looking in. We all are. I find that I can only read so much and participate so much before I have to take a break and revisit normalicy for a while.

I have that luxury.

It isn't easy to ask the world to pay attention to a problem that we all wish would simply go away. No one likes to think about ALS too much, especially me. It is frightening, it is lonely, it is sad and I am unable to do much more than sprinkle water on a roaring fire and pray for some miracle to put the damn thing out.

I am on the outside looking in and I am paralysed.

Can I make a difference? Maybe. Maybe I can make people aware so that when they hear the acronym which is ambiguous to most, they will know what it means. Really means.

Do I want to shock people, make them cry, make them lay in bed and night and thank God that they can still scratch an itch or roll over in their sleep?

No. Not really. There are plenty or real and heart breaking stories out there if anyone wishes to read them, but from my own experience I know, I can only bear so much. I can only cry so often and then I have to return to my life for a while. Ignorence is bliss, or at least, it seems so.

No, I am not going to ask people to eat, sleep and breathe the reality of this terrible disease as that serves no one, least of all, those who are trying to cope with ALS.

What I want is to make you ask the questions I have begun to ask.

What causes ALS and why is it that it seems anyone can get it:?
Is ALS a disease at all, or is it a product of our environment ?(You can't catch it and it isn't necessarily genetic)
What is the link between ALS and Quam? (http://www.als-mda.org/Publications/als/als10_6.html#guam) and (http://www.alsa.org/news/article.cfm?id=221)
What is the link between pesticides, herbicides and chemicals and ALS? (http://www.medscape.com/viewarticle/481984_5)
Why is there an increase in cases of ALS among war veterans? (http://www.alsa.org/news/article.cfm?id=1052)

I want to ask these questions because as much as I am on the outside looking in, it may well be that one day I will be on the inside looking out, hoping someone out there is asking these questions as well. It isnt that the information isn't out there, but not enough of us are aware that we are at risk or that we should even be asking the questions.

How many people are just like me, living their lives day to day, worried about work and paying the bills and not thinking about the water they drink or the food they eat? How many people are just like me, on the outside looking in? I suspect, unless you are touched by the disease, most of you.

I am asking that you unfog the glass and see more clearly.

I am hoping you will ask the questions and ask others to ask the questions. I am hoping that we all opt to make a difference while we can; while we have the luxury of being on the outside looking in.

Raising ALS Awareness - My Life With ALS - Home

2010-02-17T21:37:00.000-07:00

Raising ALS Awareness - My Life With ALS - Home

Do you have a positive message to share?

2010-02-16T12:33:00.001-07:00

If you have a short story or a quote of inspiration and hope, please add it here. We appreciate the sharing of postive thoughts and messages as great words inspire great deeds.
Jodi

About Hope for Joy

2010-02-14T16:45:00.005-07:00

I have been asked numerous times why Hope for Joy and what is my relationship to Joy.
First of all, I will talk about Hope for Joy and in a later writing, I will tell you more about my relationship to Joy. I created Hope for Joy when my dear friend and cousin, Joy Styles, was diagnosed with ALS in August of 2009.

Prior to that time, I can honestly say that I knew nothing about ALS. In fact, when she told me that they were testing for a variety of diseases including cancer, I was relieved to learn it was ALS and not a cancer. However, I immediately got onto my computer, did a little homework and learned that cancer might have been a blessing when compared to ALS.

ALS robs the person of their ability to move, eat, speak and eventually breathe while the person remains completely conscious and utterly helpless. There is no cure.

I created Hope for Joy to help Joy, and with the help of so many of her friends and family, we were able to raise almost $45,000 when we concluded the fundraising for her in November. I might have stopped there as our goal was achieved, but I felt that there was and is a need to help others as well as generate more awareness about this disease.

The purpose going forward is to continue to raise funds for others who have ALS but not through the traditional fundraising efforts. I believe in helping everyone, and I believe in fundraisers that help all involved, not only those receiving the funds.

Therefore, Hope for Joy is about raising funds through initiatives such as a writing contest, which allows writers to showcase their work, allows readers to gain hope and inspiration through the stories, and it helps the families of those who are living with ALS.

The goal is to spread hope and joy to everyone involved... and I hope that you are able to help and show support in the journey, not by donating money but by sharing your story and sharing this website with others.

To learn more go to: http://www.hopeforjoy.ca/

Thank you

Social Entrepreneur - Wikipedia Definition

2010-02-14T13:43:00.000-07:00

Wikipedia defines Social entrepreneurship as the work of a social entrepreneur. A social entrepreneur is someone who recognizes a social problem and uses entrepreneurial principles to organize, create, and manage a venture to make social change. Whereas business entrepreneurs typically measure performance in profit and return, social entrepreneurs assess their success in terms of the impact they have on society. While social entrepreneurs often work through nonprofits and citizen groups, many work in the private and governmental sectors.

Join Hope for Joy in its efforts to make our world a better place to be

Inspirational thought of the day:

2010-02-09T10:22:00.000-07:00

Take the leap and grow your wings on the way down

2010-02-01T11:46:00.000-07:00

I found this site which is women trying to change the world. Thought I would share it.

http://braveheartwomen.com

2010-01-31T22:36:00.000-07:00

Project A.L.S and Packard Center Take Aim at ALS with $15 Million Program - http://www.projectals.org/PDFs/P2_ALS_draft_press_release.pfd

2010-01-31T17:58:00.000-07:00

I have taken the following from Project A.L.S.

http://www.projectals.org/media/CBS_POPUP.html

2010-01-27T21:37:00.001-07:00

If you have questions about the writing contest, feel free to post them here as well. In brief:

It is non-fiction
stories may vary, but the idea is hope, over-coming adversity, learning more about oneself through trials or loss, enlightenment or sharing of a touching period in time. The story need not necessarily have a happy ending, so to speak, but it should leave the reader feeling moved emotionally and better in or changed some way because of it
electronic submissions are preferred, but an address and further information will be provided prior to the opening of the contest if you wish to mail an entry

If you have any questions that you did not find answered on the site or above, don't hesitate to drop a note.

Introduction

2010-01-27T14:12:00.001-07:00

I have created this blog as a forum for you to leave notes, post questions or comments and share information. It allows you to provide feedback and thoughts here rather than through email, and perhaps share ideas. The sky is the limit... but please be aware that this is an open blog. We are not responsible for the comments which are posted here by members, and we do not support any statements or claimes which may be made. Please be aware that there are individuals and organizations which prey on people in need, and may try to sell their services here... as anywhere. Please do your homework and please respect others thoughts and opinions.
JAM