No Suit? No Problem!

Mister Neat’s partners with Angels for ALS Gala again!

Just in time, we have partnered with Mister Neat’s Formalwear to outfit the black tie optional Angels for ALS Gala.  They have generously offered a $40 discount on all Designer Tuxedo’s starting at $99.95 and up for this event.  Simply mention our event name to receive the discount.  Visit their website at www.misterneats.com or call 1-888-NICE-TUX (1-888-642-3889) for a location near you.  Simply download the Mister Neat’s Flyer here, print it out and bring it with you.

 

If you are coming in from out of town, Mister Neat’s is affiliated with Savvi Formalwear & Friar Tux.  You can go to any of their locations to be measured.  Then simply call 303-980-5999, the Mister Neat’s store closest to the Belmar Center and provide your information.

How often do you allow yourself to get completely dressed up and have the chance to document the occasion?  Bring your cameras, but we will be taking pictures, too!

 

Mister Neat’s respectfully asks that you try to come in four days prior to the event for the best choices and time for fitting.  That would be October 9th for us, so don’t delay.

 

If you haven’t registered for the Gala yet, click here to RSVP or donate.  Thank you.

Is your RSVP in?

Hi everyone,

We have been planning for months and the Angels for ALS Gala benefiting Extra Hands for ALS is less than two weeks away.  We will be ready for an incredible event!  The RSVP date was Friday, September 28th and due to our new electronic format, the online registration form closed the guest list completely.  Oops!!!  I didn’t know that was going to happen.

If you were planning on attending and attempted to register online, please try again as I have changed the RSVP date to October 7th.  That is the drop dead date for the caterer to know how many meals to prepare?  You still have the opportunity, convenience and security of online registration.

I apologize for the confusion this may have caused and please forward this email to anyone you know that was considering the Angels for ALS Gala!

Noodles & Company Update

In regard to the previous posting about Noodles & Company, we are honored to announce that $418.51 was raised on August 21st to benefit Extra Hands for ALS.  Thank you to the many satisfied diners and the generosity of the folks at Noodles & Company who donated 20% of their gross sales that evening.  This is the restaurant located at 12023 East Arapahoe Road at Peoria in Centennial, Colorado.

Every once in a while we find a gem of a company in our locale that is community oriented.  Please help us in showing our gratitude by patronizing this location.  The food is great and you will feel good supporting a local business that cares.

Noodles & Company

For all you local readers out there, the great folks at Noodles & Company have been so kind as to offer 20% of their sales for the night of Tuesday, August 21st, 5-9pm to benefit Extra Hands for ALS.  This is for their restaurant located at 12023 East Arapahoe Road at Peoria in Centennial, Colorado.

Please join us for a great meal from a generous and community oriented company!

Save The Date!

The second annual Angels for ALS Gala is scheduled for October 13th, 2007 at 6:30 pm.  Last year, over 250 people attended with almost $90,000 raised benefiting Extra Hands for ALS and our research partner, the ALS Therapy Development Institute (ALS/TDI).  This year we are reaching for 400 people to enjoy this beautiful night out.  We will be honoring the student, mentor and family volunteers that make Extra Hands possible.

We are fortunate to be at the same venue at the Belmar Center in Lakewood, Colorado.  Our sit down dinner will be presented by our friends at Gourmet Fine Catering.  The evening will include silent and live auctions, dinner, entertainment and dancing all in a black tie optional theme.

Table sponsorships from $1,500 to our $10,000 are available with multiple marketing and recognition opportunities as well as individual tickets for $125.  Click here for more details and online registration.  If you did not receive a formal invitation last year, please respond to this posting with your contact information as soon as possible so we can include you in the mailings.  We would appreciate you forwarding this posting to anyone that you think might be interested in participating in this incredible event as it is our main fundraiser for the calendar year.

If you are unable attend there are still many ways to participate.  We are always looking for silent auction items and volunteers for the evening to help with all the details an event like this requires.  Also, if there are companies that could help offset the hard costs, i.e. venue and caterer, we would be honored to have you listed as event sponsors for marketing purposes.  Please contact Steven or Jennifer Bishop at 303-423-3779 or email denver@extrahands.org for more information.

Of course, we always appreciate a donation of any kind which can be done online by clicking here or sending a check made out to Extra Hands for ALS at 8237 Swadley Court, Arvada, CO 80005.  Lastly, thank you all for your continued support of ALS awareness, programs and research.  It is your involvement in these issues that provides purpose and hope in our lives.  We are humbly touched by your dedication and interest.

Independence Day 2007

Last night, on the 4th of July, Jennifer and I snuggled up and watched the annual fireworks display that the City of Arvada hosts and the radio station KOOL 105 sets to music.  Just prior, we had a great dinner with friends at our house with their two boys, so Christopher had a play date as well.  The food was great and the company even better.

We arrived somewhat late to the Stenger/Lutz Sports complex where the fireworks take place.  I was worried that we might have trouble getting a parking space, even with disabled plates.  As it turned out, we ended up with very close parking and a perfect view of the celebration directly below the massive booms and lights above us.

Since this is a regular tradition with us, it’s kind of a marker of my progression.  Jennifer and I were laying down with Christopher in a sleeping bag at our feet staring straight up when it hit me we were able to spend another 4th together.  Most of our other holiday plans are somewhat variable in activity, but we have made this an annual event for quite sometime.

After being married for 17 years, Jennifer said she was thinking the same thing about how blessed we were to still be able to watch the fireworks together.  I think it’s almost impossible to dwell in negativity when you see the majesty of a grand display such as this.

We tend to take in all the details.  The younger couples behind us that had been drinking, albeit a bit loud and obnoxious, were simply enjoying the show.  Christopher and his buddies were ever vigilant with the constant question, “Was that the finale?”  The wind was blowing pretty good which actually blew the smoke away from the lights for a crystal clear view of each explosion.  The designs that the fireworks can make now are amazing, from hearts to interlocking rings and stars.  This year added a new one that blew up into scores of bright lights and then propelled themselves like fireflies until the ember extinguished.  That was our favorite of the evening.

I woke up early this morning and let our two dogs, CJ and Tumnus out, and made a cup of coffee.  We planted some trees in the backyard this year and I went out to check on their progress.  They had been in shock after being transplanted and were now showing signs of new life.  For some reason the moon was still out as if watching me take things in.

 

This was a series of events that I haven’t pondered in a while and it is refreshing beyond belief when you take the time.  So on this day, take that extra moment to breathe the fresh air, walk up close to a tree or plant that is showing new growth, smile at a newborn and choose to make a positive difference in someone’s life.

Weekend to Remember

The first weekend in March brought Jennifer and me to a Christian couples retreat entitled, “Weekend to Remember.”  We had heard about it through our church and others who had previously attended.  Jennifer was the true catalyst in attending and booked it months prior with a general nod of approval as I quickly forgot about it.

As the date approached, I realized that our marriage could definitely use some revitalizing.  Now understand that we have been married for almost 17 years and the last six have been together 24/7.  With me not able to work or drive, I am mostly homebound.  This statement is not for pity by any means as I have an incredible support system that is ready to take me anywhere if I need to go.  It simply means that most married people get a break from one another during the work day, for better or worse.

We basically were coexisting and co-parenting without realizing it.  This may seem difficult to fathom when we are faced with ALS everyday.  However, as I pointed out in the posting dated February 28th, “I’m still here,” we had fallen into the doldrums of life only to be reminded a little more often than most that life is precious.

The timing of the retreat was perfect as I had just finished that article and was ready for a fresh start.  Christopher stayed with our dear friends and his guardian’s for the weekend.  We headed off to Colorado Springs at the Cheyenne Mountain Resort about an hour and a half south of our house.  It is a beautiful resort set at the foot of Pikes Peak.  We were joined by Jennifer’s brother, John and wife, Shelly.  Although, this is a time to work on your own relationship, it was great having their company as well as perspective.

We would spend Friday evening, Saturday and Sunday in a conference setting with incredible speakers, breakout projects, homework and a date night.  Our first night project was spent with some brutal honesty about our relationship and what wasn’t right.  Why did we feel like we were coexisting when we were in love with each other?  We figured the organizers wanted to break you down before they built you back up over Saturday and Sunday!

Each session was biblically based, but non-threatening to the general public.  We found out that there were married, remarried and premarried couples in attendance.  The married couples varied from two weeks to 46 years together.  Some actually had divorce papers sitting at home based on the outcome of this weekend experience.  They told us at the end of the weekend that they were going to throw them away.

The majority of the sessions had to do with how to achieve oneness with your spouse, the way God intended.  Communication, expectations and responsibilities were main concepts of discussion.  There were so many stories that hit home for most that the mood was kept light by these anecdotes.  One of the sessions had the women separate from the men.  That was hilarious and yet so educational.

One of my favorite parts was date night on Saturday.  We were looking in the local directory for restaurants in the area.  We found one with a decent menu and off we went.  It turned out to be a bar with pool tables and loud music…not what we had in mind.  Just around the corner was another restaurant that looked a little more docile.  Walter’s Bistro was the name where we had the first date of our rekindled marriage.

The ambiance was perfect with an upscale feel, comfortable seats and serene lighting.  Two martinis’s, one up and slightly dirty, the other on the rocks with a twist, our usual.  We were going to have an appetizer but looked at the dessert list and found one of our favorites so we held out.  The main course was fantastic but what made the night was the wine.  The last wine on the last page of the wine list was one of Jennifer’s favorite, a 2001 Marques de Riscal.  I ordered it without her noticing, so when the waiter brought it, her eyes lit up.  It turned out to be the last bottle of the 2001 they had.  We finished up with Crème Brule that we had saved room for…yeah, right.

It really did feel like a first date, but we had no camera to commemorate it.  The couple next to us had one and we asked if they would take our picture and email it to us.  True to their word, they had sent it to us on Monday after we had returned. Click here for the picture.

We came back from the weekend rejuvenated with life and the oneness of our marriage.  Thank you to www.familylife.com for their dedication to improving marriages and building the bonds of oneness that allow these relationships to persevere.  I invite you to peruse the website with an open mind and heart.  On a similar note, our dear friend, Randy Ferguson hosts a series for both individuals and couples called Love, Courage and Achievement or LCA for short.  His web site is www.lcaproject.com.

Jennifer and I have been reading quite a bit lately and hope to put up a list of books with short reviews at some point.  We bought several books from the weekend.  This is part of my new adventure and pursuit of purpose in my life.  The books are diverse and contemplative.  They invite introspection.  So many times we don’t know what questions to ask ourselves to make us better spouses, parents and friends.  How many of us want to know?

Slow Progression Question

There were an incredible amount of supportive and encouraging emails that followed the last posting.  Thank you all so much.  One person in particular brought something to my attention.  She was wondering if there were any other slower progressing patients out there.  Let’s define slower progression, generally, as still mobile and independent approximately three years from diagnoses.  This doesn’t mean you aren’t using any assistive devices, i.e. AFO’s (Ancle Foot Orthosis, aka Ankle Brace), canes, occasional wheelchair for long periods of walking or standing, etc.  Simply put, if you feel your progression is considerably slower than you anticipated, you are who we are looking for.

The purpose of identifying this demographic is that slower progressing ALS patients begin to feel slightly out of place in support groups.  The feeling is that we aren’t relating to the relatively normal progression of ALS very well.  We don’t quite experience the “Always Loosing Something” perspective of the disease.  This is not a reflection on either progression, simply an observation.  Therefore, if we can identify some people in this slower progressing group, we could begin a forum that would be helpful in dealing with some of the feelings outlined in the previous post, “I’m Still Here.”

Soooo, if you fit into this slow ALS demographic (physically, not mentally, ha ha) or know someone who does, will you please reply and let us know if this separate forum is of interest?

Yes, I’m still here.

It has been a long time since posting to our site.  This has been a particularly hard winter.  Yes, we do live in Colorado, but the meteorologists here say it’s been the coldest in 30 years and we have had snow on the ground for two months.  We’re used to getting a foot dumped on us and it being 57 degrees and sunny the next day when everything melts.  At last, we had a major meltdown the last couple weeks and we can see most of the grass again.  Yet today, it is cold and snowing again.

However, the weather hasn’t been the only tough thing.  We have lost 5 of our patients in the last two months.  Emotionally, it has been a strange time dealing with ALS and my unusual longevity.  Jennifer and I thought and planned on me being dead by now.  Thank the Lord, I am not.  However, I feel a bit like I’m in Purgatory, right now.  Don’t get me wrong, by any means; I feel completely blessed with this slow progression as it has allowed me to enjoy and experience so many things that I thought I was going to miss.

It’s how I imagine outliving your retirement might be.  Now what?  I don’t feel like I’m living up to my potential right now and the motivation factor is running low.  Half of me is in this end of life mode of taking everything in and enjoying all the little things God has set before me; the other half is in the rut most people deal with of day to day life.  It’s the second half of this that is troubling me.  I have this constant reminder (ALS) of how precious life is and yet, because of my slow progression I get caught up in the monotony of life.  I am so used to my own symptoms that my body often compensates to changes before I realize anything has happened.  Then, all it takes is a visit to an ALS patient with a typical progression to bring me back to the reality of the disease.  And they say ALS doesn’t affect the mind.  Ha!  Maybe it’s time to see a counselor.

I still know I am making a difference through Extra Hands and thoroughly enjoy meeting the patients, students and mentors.  These are truly beautiful people and inspirational to me and others they come into contact with.  It is so refreshing to see how selfless and compassionate people can be.  They are really my role models and make me wish I had done a smidgeon of what they are doing during my previous life before ALS.

Overall, I am coping and staying positive as much as possible.  It is just one of those transitional moments when one contemplates the next stage of life.  It is time I take my own advice I have offered on this site:

If you don’t know what your passion is, then make finding it your passion.

I am in the process of reinventing myself and improving my relationships.  How can I be a better husband, father and friend?  What can I do to make my life more meaningful?

Spring will soon be upon us and with it brings new life.  I plan to ride that wave and create a new adventure.  However, I’m not going to wait until then, as it takes some planning and a strong will.  Who will join me?

Making A Difference

Aside from my last posting summarizing the gala, I realized that not much has been mentioned about Extra Hands for ALS in a while.  We have developed an incredible organization over the past year that now services people across the metro Denver area as well as a satellite group in Steamboat Springs. We have 18 families, 17 mentors and 27 students registered for full or project only services.  Our student volunteers, mentors and families with ALS are making a huge difference in each others lives as well as others that have had the pleasure of their company.  Thank you all so much for what you all are doing for ALS.

I want to give an example of the kind of individuals we have had the honor of getting to know.  In the last posting, I talked about three very extraordinary individuals from Cherry Creek High School (CCHS): Aly, Cynden and Addie.  I’d like to get a little more specific about their involvement with and the affect they have had on Extra Hands and the Bishop family in general.

Jennifer and I had been recruiting student volunteers in various high schools around Denver and speaking with scores of students at a time.  We had the opportunity to introduce Extra Hands to their Distributive Education Club of America (DECA) made up of students in marketing classes. It is an active club that develops business leadership and social activities. Competitive events are held at the local, state, and national levels in salesmanship, advertising, display, and job interviewing. They have over 200 members at CCHS alone and we were very excited to tap into this wonderful network of people.

When we arrived, there were three students and their teacher, Mr. Konrad.  Honestly, we were slightly disappointed in the small turnout, but it goes to show you to be careful with expectations.  We had five families in the immediate area that needed assistance so we were going to give this opportunity all we had.  Ironically, we happened to be talking to three of the most intensely motivated students we have ever met.   Cynden, Addie and Aly were at the end of their junior year and looking for their senior community service project for DECA to add to their existing plans with the Muscular Dystrophy Association (MDA).

Apparently, Jennifer and I struck a cord with them as they immediately told Mr. Konrad that he would be sponsoring their Extra Hands for ALS club!  To try to make a long story shorter, these student’s involvement has become much more than a community service project and more of a symbiotic relationship with us and Extra Hands.

They have spent a significant portion of their senior year raising ALS awareness and funds as well as providing help and hope to those dealing with ALS.  Sound familiar?  Check out our life mission list on the home page of www.alsliving.com.  They have demonstrated a tremendous team effort with resounding results.

Aside from their contributions with the Angels for ALS Gala, they developed an end of the year blitz, called Give It Up For ALS, where over $4,000 has been raised during the holiday season by members of their DECA club.  Addie, Aly and Cynden didn’t tell us about this campaign, instead wanting to surprise us with the results.  I was brought to tears as we were told about all the effort that went into it and all the people they brought ALS awareness to.  There were scores of donations from people who likely knew nothing about this disease prior to their campaign.

One of the main reasons for posting this article is to encourage them as they start the process of the DECA competitions with an extensive essay and speech regarding Extra Hands for ALS and MDA.  They continue working as a team with the very difficult task of putting the passion into words that has transformed this community service project into a life changing event for all of us, and hopefully, an award winning combination of prose and dialogue for DECA.  All this is being done during their winter break.

Jennifer was much more involved in high school than I was, but even she admits that the thought of what these students are accomplishing was beyond her contemplation at the time.  The dedication and thoughtfulness with which they have approached the Bishop family and Extra Hands for ALS is beyond words and we would like to simply say thank you for all that they have done and continue to do for ALS.

As for the deeper meaning of all this to the readers of this posting; remember that you never know how much you can impact the people with whom you come into contact.  With that in mind, try to make sure those contacts are positive in nature even if it doesn’t seem to make a difference.  Two of our favorite movies with powerful messages are Pay It Forward starring Haley Joel Osment, Kevin Spacey and Helen Hunt as well as Mr. Holland’s Opus starring Richard Dryfus.  Rent them sometime when you think you can’t make a difference in this world.  If you’ve seen one or both of them, you know what I mean.

Happy New Year to all!