Feeds:
Posts
Comments

Archive for the ‘Events’ Category

Extra Hands on WB2!

We were just notified that KWGN, Channel 2 will be running a story that Vida Urbonas, WB2 News Weekend Anchor and Reporter, taped a few weeks ago.  This is our local Denver WB2 station.  The segment is about ALS and Extra Hands for ALS.  Jennifer and I were interviewed along with one of our teams of volunteers and a family dealing with ALS.

We don’t have any more information, other than it will air during the broadcast of WB2 News at 9pm MST on Saturday, February 25th.  Over 4 hours of video was shot during the taping, so we don’t know exactly what will be discussed in the 2-4 minute segment.  Vida was just a sweetheart to work with and we trust her implicitly with the content.  News being what it is, we are always subject to rescheduling or scrubbing in the event of an emergency.

Thank you to WB2 and Vida Urbonas for taking the time to run a human interest story so close to our hearts!  Our dear friend, Angie Austin, morning Weather Anchor for WB2 News got the ball rolling for this story.  Thank you, Angie!  It means the world to us to continue to get the word out about ALS.

Advertisements

Read Full Post »

ER Reaction

I can’t believe that it’s been two weeks since that powerful and extremely moving ‘ER’ episode entitled ‘Body and Soul,’ guest starring James Woods.  I must congratulate NBC, the producers and writers of ER, all the actors, specifically James Woods and the ALS Association.  It’s quite an undertaking to portray the progression of a person with ALS in a one-hour episode less 15 to 20 minutes of commercials.

I know I have a slow progression of ALS, but I’ve been around long enough to see all stages of this disease.  I simply don’t believe they could have done a better job of educating the public in such a short time.  The episode included such details as assistive communication technology, noninvasive ventilation (BiPAP), DNR orders, emotional incontinence, slurred speech and the possible range of feelings, one with ALS might experience.  I’m sure I even left out a few.

The caregiver role was addressed, but just barely.  To be honest, that could be a whole other episode.  At least they showed her in the early stages as young, energetic and vibrant.  At the hospital, she wore no makeup, had tousled hair with bags under her eyes.

I thought it was very clever to use flashbacks in order to view the progression of ALS with James Woods’ character, Dr. Lennox.  In the last flashback, 1999, he is seen in his classroom full of energy, even lifting a 155 pound student.  His first symptom was subtle, as it usually is, by the simple dropping of the molecule model, as he talked Abby out of dropping his class.  The emotional struggle was evident after he got his diagnosis and decided not to pursue the relationship with his assistant.  Dr. Lennox was having trouble balancing and was trying to use his opposite hand on the stair rail, when he fell and broke his wrist.  Finally, slurred speech and breathing difficulty was evident in the first flashback.

This script writing for this episode was very well done.  They were able to include so many descriptive details, as opposed to simply mentioning the assistive devices.  I contemplated the possible double meaning in one of the first scenes when Dr. Lennox’s voice synthesizer says, “want out, please.”  And again, “let me out, please, let me out.”  I think the writers could have used many different phrases; however, this one said to me, let him out of his body, as well as out of the hospital.

James Woods was interviewed by Katie Couric on the Today Show the morning the episode aired.  He obviously went over his allotted airtime as Katie kept trying to cut him off.  He was so passionate about getting as many details in as possible.  James shared that he had the opportunity to speak with six different ALS patients in different progressions thanks to the ALS Association and the patients that volunteered their time.  The show would not have been the same without their help.  Thank you all.

The talents of James Woods will not go unnoticed.  I have no doubt that he will win the award for Best Guest Actor in a Series.  The community of ALS has a dear friend in James Woods.  I have to imagine more awareness was brought to ALS in this one-hour show and related interviews since ‘Tuesdays with Morrie.’  We now have one more frame of reference to allude to when describing ALS.

It was extremely emotional to watch the show, but necessary all the same.  My biggest concern was that they got it right in the allotted time they had.  I feel they did.  The most difficult part of the episode was the discussion and procedure of inserting the trach.  It seemed as though Dr. Lennox’s advance directives were known yet there remained confusion.  When Dr. Lockhart assumed she had consent to put the trach in, my bride Jennifer broke down in tears.  She wasn’t sure if she would be strong enough to handle the same situation if it were me.  She knows my wishes and they are documented.  Even so, if Jennifer is not ready to let me go and there is a persistent doctor, she is concerned about the ability to follow those wishes.  If there is any doubt, I know the right decision will be made.  I am at peace about it all.

I welcome and encourage any comments to this posting.  It is a great conduit for discussion and awareness.

Read Full Post »

Network Correction

This is what happens when you try to do to many things at the same time!!!

‘ER’ airs on NBC at 9pm MST, Thursday, February 2nd.

‘The Late, Late Show with Chris Furguson’ airs at 11:35 pm MST on CBS, Wednesday, February 1st.

Sorry about that.

Read Full Post »

ER Reminder

In case you haven’t heard, Thursday’s (Feb 2) episode of ER (CBS at 9pm MST), will be entirely devoted to a character with ALS. Actor James Woods will play ALS patient, Dr. Nate Lennox. The episode will employ a series of flashbacks, beginning with his diagnosis years earlier, to underscore the many phases of the disease that patients experience and the associated challenges.

 

To further promote ALS and the ER episode, James Woods is scheduled to appear on “The Late Late Show with Craig Ferguson” on CBS on Wednesday, February 1st. In addition, this week’s issue of TV Guide features a story on the ALS episode.

Read Full Post »

ALS Episode on ER!

The February 2nd episode of ER, entitled “Body & Soul”, will be entirely devoted to a character with ALS.  James Woods, who plays the man with ALS, met with 6 individuals with ALS last December for a crash course in living with ALS.  For the full story, click here.

Also featured in the episode is Eye Response Technology, which allows people to communicate through eye movements via a a computer and voice synthesizer that can attach to a wheelchair. For more information click here.

This is the type of national exposure we need to make ALS as well known as Parkinson’s and MS.  Thank you to the ALS Association for their involvement to make sure they got it right!

‘ER’ airs Thursdays on NBC, at 9:00pm MST.

Read Full Post »

Tri-State Trek Total

I wanted to write one final note on the Tri-State Trek.  As of last count we reached $4,454 in Team Bishop contributions for ALSTDF and support for our incredible riders.  This ended up being 44% of our $10,000 goal.  I guess that is just a number that is prevalent in our life!  That goal was simply a nice round number to shoot for and please know we are thrilled to cover our dedicated riders commitments and exceed that by over $1,000 in this first year of our fundraising for this event.

Jennifer has vowed to do this ride next year and she has been very dedicated since August working out on our Nordic Track.  She is looking forward to taking a spin class soon as well.

Please take a look at the following email we received from event coordinator Mat Mandel in regards to summarizing this years efforts and looking forward to next year:


Good morning!

On-line registration for the 2006 Tri-State Trek is now open!  We’ve already begun receiving paper registration forms, and are well beyond where we were this time last
year!  Thanks to the folks at active.com, on-line registration is available to both Crew and
Riders.

As of now, reg fees for the 2006 event will remain what they were last year ($125 for Riders and free for Crew).  However, after November 25, these will increase to $150
for Riders and $35 for Crew.  Why?  We’ve spoken to our friends at UConn and have secured air conditioned dorms!  Because we don’t fundraise for air conditioning, we
need to pass these costs along to continue to ensure that as much money as possible is returned to the ALS TDF.  Next year’s fundraising commitment will remain $1650.

Though not all 2005 fundraising has been collected, we are able to project that we will bring in almost $92,000 in participant fundraising.  This, along with about
$18,000 in sponsorship income and registration fees will bring the total funds generated for 2005 to over $109,000!   So now you have an idea of what kind of growth we’ve
seen, two years ago (our first year) that number was $41,000.  Not too bad!

Finally, here are some more great pictures of this year’s event sent in by Craig Roth.  Click on Tri-State Trek Photo Gallery.  Then click on “Slideshow” at the top of the page for best viewing.

See you all soon!

Mat


We would love to go back to Boston with a much larger contingent of riders next year.  We know a lot of you reading this are avid bicyclists.  This is an incredibly well run and beautiful ride.  Don’t hesitate to register early under Team Bishop!

All of Team Bishop consisting of Todd Morin, Ty Ricker, Jennifer and myself want to express our overwhelming gratitude to everyone that contributed financially and in spirit.  You are our inspiration to continue our fight and maintain our positive attitude.  Thank you so much for your generosity!

Read Full Post »

Parade Magazine

In conjuction with the Jerry Lewis MDA Labor Day Telethon, Parade Magazine publishes a story relating to Muscular Dytrophy.  Jennifer and I were honored to be on the cover in 2003.  ALS is one of the 43 neuromuscular diseases MDA services.

We were contacted a few weeks ago about doing a follow-up from previous covers.  They asked for pictures and interviewed us.  We have no idea what to expect, but please make sure you get the Parade Magazine in this Sunday’s newspaper, September 4, 2005.

The Telethon airs on KWGN Channel 2 in Denver starting this Sunday at 10pm.  Go to http://www.mdausa.org/telethon/TVStationListings.pdf to find your station and times if you are not local.  They are accepting pledges for Hurricane Katrina relief as well in the first and last 4 hours.  Please take the time and donate to both of these worthy causes if you can.  It feels so wonderful to give something…anything.  Thank you.

Read Full Post »

« Newer Posts - Older Posts »