Tuesday, May 26, 2009

Farewell Bobby Brannigan Farewell

So You Know Bobby & Becky Brannigan?   
This Harley riding enthusiastic couple has been married for 30 yrs, home is the small town of Spruce Pine. Bobby has been coping with ALS since 1994 and is one of the early ALS advocacy pioneers. Becky works full time for the school system and as the caregiver she counts on their two children, daughter Betsy 23, son Rusty 19. Both are a great help and have a real understanding of living with ALS in their home. Bobby has been instrumental in the develepment of the web site, Patients Like Me. He mastered copy and paste years ago and has recorded more than 1300 posts on Neurotalk Communities. Over those years he has helped us cope with ALS and continues to have the spirit to grab additional handfuls of life. Let's say one day you get really sick of the computer and your powerchair. Bobby did, he turned to his caregiver and said, "Lets go Skydiving"! Heck, I can fall out of a plane, no problem.  That's exactly what Bobby & Becky did and it was off to the airport. Bobby suited up and jumped tandem with Sebastian Sky Dive. Located in Florida, this group is skilled at jumping with disabled people. When you see the photos the proof is in his eyes. Wait, this story goes on! Bobby turns to Becky, and says "Lets stop in Daytona and take a ride in Tony Stewart's car! Guess what? Tony Stewart's car was not available but Bobby was the first to say, "How about Dale's #8?" With racing suit, fire cap and helmet the guy from North Carolina was about to do 175 mph., a real man of steel. Stay tuned sports fans, next plan is a side car for the Brannigan's Harley.  Thank you Bobby and Becky for sharing your adventure. 
Hey, Steven Hawking, Weightlessness, Ha? 
Article from the Brick by Brick Newsletter, 7/4/07
Bobby passed Memorial Day 2009

Letter to Hilary Swank from Anonymous (Inbox)

Ms. Swank,

I am writing to tell you how excited the ALS community is to hear the news regarding your purchase of the movie rights to the novel by Michelle Wildgen, "You're Not You".  It is rumored, and I hope true that it may be in the development stage. 
As a person coping with ALS, I found the novel full of vivid descriptions that are all so familiar to ALS.  I don't need to explain this illness to you because this novel did an excellent job depicting the relationship between patient and caregiver.  I am excited that somehow maybe through you, the general public will see two sides to this tragic disease.  ALS is the ultimate challenge for ones marriage, children, family and friends.  My ALS journey started five years ago and I have learned a multitude of life altering things.
Somehow ALS always focuses on the patient but Michelle made the reader take a walk with Bec, Kate's hired caregiver.  If ALS is the disease we want to whisper about, where does that leave the one doing all the emotional duties?  I have had my share of relationships and thankfully a long time ago I found the companion that took me without any warranty.   Some people can go through life untouched by tragedy or without a real test of true love.  ALS could be the prelim that brings out real qualities we never thought possible.   Love can be measured in many ways but high marks are rewarded for the loved one that steps up to handle the most discrete of daily duties. 
During my five years of coping with ALS, I have found it painfully hard to get anyone to look normally in the ALS direction.  I would thank God above for sixty seconds of airtime on the tragedies of ALS.  To think that an actress like you could create a buzz never before heard is a dream come true.  You have the heart as well as the art to tell Kate's story with grace and dignity. 
I'm not sure what your intentions are for the big screen, but I'll keep my fingers crossed that ALS has a chance for real awareness.  I wish you success in whatever you plan to do with this novel but I'd like to thank you in advance.


Wednesday, May 20, 2009

$4 Gas 4 ALS B4 July 4

July 4 is the big day when ALS will be front and center to millions of Americans as MLB celebrates its 4 ALS campaign and the anniversary of Lou Gehrig's farewell.

Remember Memorial Day just a year ago when gas was over $4 per gallon? That was painful, it forced us to conserve, and we dug deeper into our pockets to fuel our cars.

Here's an idea. Buy "pretend $4/gallon gas" between the two holidays. It might actually cure a disease. Every time you fill up between now and July 4, do the mental arithmetic on how much that tank would have cost you a year ago. Put the difference in an envelope. On July 4, pick an ALS charity and send your pretend $4 gas money to one of those charities to support ALS research.

It's that simple. We found a way to pay for $4 gas last year, and we can find a way to pay for a cure for ALS this year.

Tuesday, May 19, 2009

ALS Community to Join a Nationwide Network of Independence Day Events

The ALS Therapy Development Institute (ALS TDI) announced its BBQ For ALS Awareness, is a national initiative designed to increase the awareness and understanding of ALS (amyotrophic lateral sclerosis), otherwise known as Lou Gehrig's disease. To accomplish its goal, the campaign brings together three undoubtedly American activities on July 4th, 2009 -- an Independence Day celebration, the traditional summer barbecue (BBQ), and America's pastime -- baseball.
"The only weapon we currently have against this disease is raising awareness and funds for research. The BBQ For ALS Awareness program is a simple and fun way to accomplish both, and an important opportunity for everyone to help fight against this deadly disease", said Michelle Dupree, a volunteer ALS TDI Advisory Council member. Ms. Dupree has helped to organize several BBQ For ALS Awareness events in the greater Sea Bright, N.J. area where she lives. Michelle became one of the first ALS TDI Ambassadors shortly after her friend Pam Callahan was diagnosed with the neurodegenerative disease that affects more than 30,000 Americans at any given time.

Sunday, May 17, 2009

Annual Lou Gehrig Day at Wrigley Field

Catch the Chicago Cubs Take on the Cincinnati Reds at the
Les Turner ALS Foundation’s 15th 
Don’t miss the excitement at the Les Turner ALS Foundation’s 15th Annual Lou Gehrig Day at Wrigley Field on Sunday, July 26.  The event begins at 11:00a.m. with a two-hour pre-game party at the Vic Theatre emceed by 93XRT's Lin Brehmer followed by a 1:20p.m. match up between the Chicago Cubs and Cincinnati Reds at historic Wrigley Field. 
Guests will enjoy unlimited food and beverages provided by Lou Malnati’s Pizza and Goose Island Beer Company, an exciting raffle and live auction and a terrace reserved ticket to the game.  One lucky auction bidder will throw out the ceremonial first pitch at the game and four attendees will have their photograph taken in Wrigley Field’s on-deck circle.  
$110 per person
$85 children 10-years-old and under
Inquire about premium seating packages. 
Tickets can only be purchased by contacting 847-679-3311.
   All proceeds benefit the Les Turner ALS Foundation.

Saturday, May 16, 2009


Midway through ALS awareness month I took those three letters and put them under a microscope for a closer look.

Normal - Content - Thankful
Normal popped up first because it has been fading daily from my world.  While coping with ALS (Lou Gehrig's disease) normal begs to be redefined each morning and I am not alone.  As science continues to search for the ALS triggers, they continue to attack veterans, the young, the old, male and female.  As we wait for a clue and a cure all I can do is send out SOS's when possible and raise my voice one keystroke at a time.
As muscles waste, ALS forces your body into a small box of content.  There are fingernails uncut and itches unscratched.  Towards the end of this complacent journey we will be left with the use of two objects, eyes and mind.  Most ALS patients call this a blessing to examine the past and gaze the future.  Without ALS awareness, people may think they're normal but may never understand involuntary content. 
Thankful, of course I'm Thankful.  With ALS you are going to require special care.  I used to have a wife but today she also serves as my caregiver and forever thankful to her.  I am thankful she feeds me, brushes my teeth, baths me, shaves me, and combs my hair.  When a spouse becomes a caregiver, true love is displayed most when they have no objections to their new role.  I am thankful for those simple one directional hugs because I will always have the sense of feel.
So, I type onward with two fingers, two eyes, I feel sort of normal, content and evermore thankful.  

Thursday, May 14, 2009

You Can Measure A Theatrical Agent's Worth By The Disease That The Actor's Character Gets

Izzie is the buzz on Grey's Anatomy tonight. Her seriously ill character can go in many directions from the complicated choices she is presented by the beautiful and talented (albeit dysfunctional) physicians at her hospital. Katherine Heigl has a good agent so far. Keep those options open in case you ever want to come back to the series. Of course, if she dies in tonight's episode, it will not speak well for her agent.

James Woods played a character with ALS on ER. That was a short gig.

Actors and actresses, if your character gets ALS, fire your agent.

We Should Be Talking About PPALS

At ALS Advocacy Day, two healthy women in our group were in a family with multiple cases of ALS. If there is anything worse than the ticking clock of ALS, it's the ticking time bomb of familial ALS. They were advocating on behalf of their healthy aunts and uncles and cousins and siblings who are at extreme risk for ALS. We must find the cause and cure to keep their relatives healthy.

Their words made a big light bulb turn on in my head. We should be talking more about potential people with ALS. There are millions of healthy Americans who are at risk for ALS. In a family with known cases, certainly the odds are high and the threat of ALS hangs over relatives constantly. They are all PPALS... potential people with ALS.

The rest of America is at risk, too. Every American is a potential person with ALS. We should be making every American aware that there is a terrorist disease in our midst that can strike at any time. We know not why or when. It's time that we invested nationally to find out. Until then, we should all squirm a little and advocate against this disease. We are all PPALS. Squirm.

Wednesday, May 6, 2009

Future Advocates: From the mouth of KIDS.

Next week in our nation's capital there will be a large group of amazing people gathering to advocate for ALS. Some of those advocates will be bringing letters from PALS (People with ALS) and Caregivers who aren't able to attend. All voices need to be heard and counted. Even the voices of the children who's lives have been affected by this wicked disease. The following letters are from two children (names are not shared) who have lived under the shadow of ALS their entires lives.

Dear Seniter,
My name is J. I am almost 11 years old. I am writing to tell you my personal ALS story, so that you don't view us as numbers. We are the face of ALS. Right now, there are about 30,000 faces with ALS. My granma died from ALS. She had the diesease for almost two years. When she died she was only 45 pounds! My grampa took good care of her. He also took care of his five kids and his big farm. When my granma couldn't talk, she had to use a Magnet Doodle, which is a baby's toy! My grampa didn't know of another way to talk to her. My granma had cousins who also died from ALS. My granma was a good person. Even though I didn't know her, I know she was a special person. I don't want any other of my family to get ALS. I know kid's in my school who have family members who have ALS right now. I'm afraid my mom will get ALS. She is only 33 but I know she can still get the diesease. We need you to help us get more money for research to find a cure. I know the govament gives lots of money for the flue but more people die from ALS than from the flue. Can you please help the faces of ALS?

Sinceraly: J.F.

Dear Senater,
My name is G. and I just turned 12. I'm in 6th grade and science is my favorite subject. I am writing to tell you about ALS. It is a terrible disease and it killed my Grandma Jane. She was only 45 pounds when she died and I did not even get to know her. I was only 1 years old when she died. Do you know there are 30,000 people with ALS in America right now? Did you know that someone with ALS dies every 90 minutes? 20% of all cases are genetic. I lost my Grandma and three other family members to ALS. I do NOT want my mom to get it, or my sisters. I don't want anyone in my family to get this disease ever again! I am asking you to help us get more funds for research. It is like a helping hand to the scientists who work day and night to find a cure. It is hope for people who have ALS.
Very respectfully,

Tuesday, May 5, 2009

ALS And Mothers' Day - Are We Missing An Opportunity?

ALS can take a lot of the fun out of Mothers' Day.  

There are families whose mothers are dealing with ALS today, and it's a handful.  There are orphans (some young and some old) who are encountering their first Mothers' Days after having buried their mothers who died from ALS (but probably did not succumb to it).  
We all try to make the best of a painful situation.
But, wait... are we really making the best of it?
Every year right around Mothers' Day, the ALS Association holds its advocacy conference in Washington and there is an advocacy day when concerned citizens swarm on Capitol Hill to get some attention for this nasty and largely ignored disease.
Perhaps it's time to mobilize the daughters and sons who have lost their moms.   What better day is there to have a few thousand people remember their mothers lost to ALS than by becoming active advocates on Capitol Hill?  After moms die from ALS we can't order Proflowers and we can't take them out to dinner at terribly crowded restaurants, but we can sure remember the unfinished business of ALS that stole our mothers and continues to make ALS orphans every day.
We need to keep celebrating Mothers' Day for all mothers lost to ALS by doing some good for the cause.  ALS daughters and sons need to show up and be heard.  Perhaps with a little encouragement from all of the ALS not-for-profits, Mothers' Day in DC will be identified with those thousands of people whose numbers grow every year until ALS is cured.  
Thousands and thousands of us can fight back and remember our mothers and make some good come from a holiday that can sting after a visit from ALS.

Friday, May 1, 2009

ALS Milestone was a Sugar Packet?

Saturday morning I sat in Mc'Donalds having breakfast with a wonderful hot cup of coffee.  I have always liked my coffee decorated with a little cream and sugar.  ALS had made my fingers so weak that doing a simple task like opening a sugar packet was a real challenge.  As I struggled with the sugar packet I had a flash back of an old Candid Camera episode.  Mr. Allen Funt had sugar packets made from a material that even the healthiest person could not tear open.  The scene took place at a breakfast counter with a poised colored man who was about to be one of many Candid Camera victims.  The man tugged and tugged at the packet, looked around to see if anyone was watching and continued to tug. Next he held the packet up to the light examining and confirming a little paper packet was not going to get the best of him.  He tried again with no success and became very anxious to fix the problem and wanted only to get on with his coffee.  He looked both directions to see if anyone was watching and without hesitation dropped the whole packet into his cup of coffee.  At that point Allen Funt came out and approached the man with this question, "Excuse me but did I just see you put that sugar packet in your coffee "?  His rapid reply was, "Yeah man, I always do it this way"! That was the coolest man I ever saw on camera and I will never forget his strong witty reply. 
Just like that candid camera star, I turned around to see if anyone was watching me and very slowly placed the sugar packet in my coffee.  
Then I thought, wouldn't be great if Allen Funt came out from hiding and told me "Smile You're on Candid Camera".
When a simple sugar packet wins it could be the beginning of something really horrible like ALS.  May is ALS Awareness Month.

Do We Have Some Interesting Supreme Court Nominees In Our Midst?



Dear Mr. President,

As you evaluate nominees to replace Justice Souter on the U.S. Supreme Court, please consider two outstanding law professors - Steven Gey and Michael Goldsmith. Both are accomplished attorneys who have shown courage beyond belief and have taught the law to a myriad of students. As they both deal with ALS, you can be assured that their minds are as sharp as ever and their judgement has the added wisdom that comes from confronting the really important things in life.

Oh, you had someone with a longer life expectancy in mind? If we would simply have funded ALS research correctly and attacked it smartly and aggressively, that would not have been a problem.

Are you up for a really daring choice for Supreme Court nominee? ...or else some really smart and aggressive ALS research funding? Either or both would be fine with many of us.