Three Things You Should Do Every Day...

Cancer took college basketball coach in 1993. "Jimmy V" as he was known, faced his death with incomparable courage, grace and compassion for others. The quote below is one of my all time favorites:

“To me, there are three things we all should do every day. We should do this every day of our lives. Number one is laugh. You should laugh every day. Number two is think. You should spend some time in thought. And number three is, you should have your emotions moved to tears, could be happiness or joy. But think about it. If you laugh, you think, hand you cry, that's a full day. That's a heck of a day. You do that seven days a week, you're going to have something special.” - Jim Valvano

We Were On The Radio Y'all!

http://www.wlobradio.com/audio/

 

Thanks to Shannon Moss and her Producer, Debbie, for making a couple of rookie radio interviewees feel so welcome and comfortable today at the WLOB studios. We were on air for 23 minutes and it felt like 5.

Here's a link to the station's Audio archives (above). We're at the top today as I post, but in the days to come just look for the files labeled "Shannon - John and Linda Gregoire". If we can get the files to post on our website, You'll be the first to know:)

 

 

From Our Friend and Fellow ALS Warrior, Bo Stern...

I know this is a lazy man's way of posting to a blog. I just couldn't say this any better.

Living on the Right Side of However

Here's To The Caregivers

Last fall, Linda I were sitting watching a movie named "Starting Out The Evening" on the Sundance Channel, featuring a wonderful performance by Frank Langella as an aging novelist. Towards the end of the movie he has a stroke. After he comes home, his daughter's boyfriend, who he has been at odds with, volunteers to take him to a doctors appointment. Langella's character is walking with a cane and he lives on the upper west side of NYC.

As he and the boyfriend are walking down the street to the doctors office, it reminded me that the last time I travelled to NYC, I was using a cane and was noticeably unsteady on my feet. A bit later on in that same section, after the doctors appointment, it switches to a scene of the novelist in his bathtub with the boyfriend helping him. Because of the stroke, he needs help getting out of the tub , so the boyfriend gently wraps his arms around the old man, who is essentially dead weight, and helps him out of the tub and tenderly dries him off with a towel.

At this point, Linda and I come undone because, that scene is representative of our every morning ritual. Being cared for, when your legs and arms don't work, is humbling. Being the caregiver, is flat out the most difficult task - emotionally and physically - one can have dropped on them. How Linda gets from day to day is beyond me. No one, except another caregiver, can comprehend the Intense pressure of spending very waking minute thinking about the everyday stuff we all deal with AND being the eyes, ears, legs and arms for someone else.

I've said it before and I'll say it here: Linda, I loved you without end before ALS hit us. I still love you endlessly but my respect for you and all you do with such tenacity and grace cannot be measured. Good movie, huh? Love ya babe<3

Morrie: 6 Lessons

The real Morrie Schwartz, the subject of the book and movie Tuesdays With Morrie, from a series of interviews he gave to Ted Koppel. The list of 6 points he makes starting at about 4:30 into this clip should be printed on wall plaques and given to every newly diagnosed PALS…priceless

Hope-JG at the White House!

Our friends, Sarah and Kathryn Caldwell and their Mom Sharon Leskanic went to DC earlier this month. Their trip had a dual purpose. They all joined ALS advocates from around the country for the annual ALS Advocacy Day held by the ALS Association. ALS Advocacy Day is a chance for families affected by ALS to meet their Congressional delegation, tell them how ALS has changed their lives forever and ask for ongoing financial support or research.

Sarah was also honored at a ceremony at the Smithsonian with the 2014 Prudential Spirit of Community award. Sarah's Dad, 56 year old Jim Caldwell died of ALS in October of last year, about a month after Sarah had raised $23,000 for the local Walk to Defeat ALS.

The trio also kindly sent us this Hope-JG photo to add to the Hope Facebook Page (https://www.facebook.com/TeamIsaiahHope).

How about you? Won't you show support for people with ALS, MS and other neurodegenerative diseases by making a sign like this and taking a picture from wherever you find yourself? Send it to: info@hope-jg.org or post it directly to the Hope Page on Facebook.

Living With ALS

Andrew Ragan was a businessman in Saratoga Springs, NY, when he became a victim of ALS, or Lou Gehrig's disease. In this interview, he describes the onset and his life with ALS. His story is typical of ALS victims and his wife's story is shared by thousands of caregivers.

Disability, Adversity and Victory

Last year a friend posted something on my Facebook wall that I was just starting to understand about my own battle with ALS. You see, in spite of whatever accomplishments or shortcomings I may have had in my pre-ALS life, strangers now either look past me or look on me with uncomfortable (for them) pity and curiosity.

 

Yet, I'm the same person, with the same mind albeit in a physically deteriorated state. The thing I've come to realize is that my perspective on life and living, which I took for granted 8 years ago, has become a strength I can use to share with people. Hopefully, I can help them see that my life and ability to make a contribution aren't over because I have a disease with no cure. Maybe I can even turn their pity into a realization that the next guy they meet in a wheelchair who "Doesn't look quite right.",  just may be as "normal" as they are.

"Some of the world's greatest men and women have been saddled with disabilities and adversities but have managed to overcome them. Cripple him, and you have a Sir Walter Scott. Lock him in a prison cell, and you have a John Bunyan. Bury him in the snows of Valley Forge, and you have a George Washington. Raise him in abject poverty, and you have an Abraham Lincoln. Subject him to bitter religious prejudice, and you have a Benjamin Disraeli. Strike him down with infantile paralysis, and he becomes a Franklin D. Roosevelt. Burn him so severely in a schoolhouse fire that the doctors say he will never walk again, and you have a Glenn Cunningham, who set a world's record in 1934 for running a mile in 4 minutes, 6.7 seconds. Deafen a genius composer, and you have a Ludwig van Beethoven. Have him or her born Black in a society filled with racial discrimination, and you ohave a Booker T. Washington, a Harriet Tubman, a Marian Anderson, or a George Washington Carver. Make him the first child to survive in a poor Italian family of eighteen children, and you have an Enrico Caruso. Have him born of parents who survived a Nazi concentration camp, paralyze him from the waist down when he is four, and you have an incomparable concert violinist, Itzhak Perlman. Call him a slow learner, "retarded," and write him off as ineducable, and you have an Albert Einstein." -- Unknown