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!

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Angels for ALS Gala Review

The dust is finally settling on the Angels for ALS Gala.  What an incredible ride it has been.  The Belmar Center lease was signed on June 16, 2006, thus committing us to full-time planning for this event.  Four months later on October 14, 2006 we experienced one of the most rewarding, emotional and successful events of our lives.

Jennifer and our incredible army of committee members and volunteers spent the afternoon decorating and organizing for the gala that evening.  At home, I was still working on seating arrangements and fielding calls.  I did manage to sneak in a nap to save some energy for the evening.

We arrived at about 5:30 p.m. in order to address any last-minute details.  This was my first opportunity to view the venue in its entire splendor.  From previous experience, I brought my walker which has a seat on it.  It would be a very long night if I had to stand for the whole evening.

As we entered the elevator that took us up to the vestibule, a rush of excitement and nervousness overwhelmed me.  The doors opened and our trusty volunteers were busy at work setting up the registration tables.  Behind them the dining room remained closed.  Jennifer and I made our way out to the terrace where the silent auction was set up.

It was just beautiful.  Lights twinkled above our heads as we gazed over the tables draped in black and tastefully covered with 105 graciously donated items up for bid.  The tables also had black and red painted “Angel” and “Believe” signs carved out of wood, emphasizing our theme for the evening.  Each auction item was meticulously described and/or displayed. What an amazing first impression!

Guests began filtering in while I was able to absorb the joyful look on their faces as they experienced their first impression.  Everyone looked incredible decked out in their suits, tuxedos, cocktail dresses and gowns.  It was such a privilege to greet people as they came in and thank them for attending.  Soon the area was buzzing with guests scribbling in their bids and having wonderful discussions.  Delicious appetizers were hand served to the mingling crowd.

Jennifer and I strategically separated so we could visit with as many people as possible.  I sat in my walker right in the middle of the auction area so I could catch people as they walked by.  Jennifer fluttered around like a butterfly, gracefully greeting everyone she could.  Time flew by and according to the schedule we needed to shut the auction down and move into the dining room.  It seemed as though things were just getting started so we extended the time another 15 minutes.  All too soon, we had to get the dinner program started, therefore ending the silent auction.

Enormous blinds were lifted exposing the elegantly decorated Main Ballroom.  It seemed as though our guests did not want to leave the Terrace, however, dinner beckoned.  The walls were decorated with large photographs of Extra Hands for ALS families and volunteers, tastefully outlined in black with red trim.  The tables were adorned with stylish centerpieces, black linens and white place settings.

Appetizers and dinner were catered by Gourmet Fine Catering and received accolades for days after the gala.  Apparently, people expect rubberized chicken and soggy vegetables at these types of events as opposed to our succulent meal.  With the decadent caramel cheesecake and coffee being served, the evening’s program began.

Angie Austin and Chris Parente from KWGN/CW2 Morning News co-emceed the event with flare and wit offering light moments as well as emotional praise.  Angie has been a dear friend to us for five years and brilliantly suggested Chris for her counterpart.  Together they were a terrific team and we are truly grateful for their time and generosity.

Next, our CEO for Extra Hands, Jim Presbrey was introduced and provided the general greeting and introduction of our organization to the mix of 255 attendees.  Jim is from New Jersey and made a point to arrive two days early to help us with the final plans.  His eloquent and sincere presentation offered an air of integrity to the gala as well as setting the tone for the whole evening.

We then had the opportunity to address the audience.  I had to take a moment and absorb the whole atmosphere with the venue and all the incredible people glimmering in the warm candlelight.  Jennifer greeted everyone and thanked them for attending along with encouraging everyone to introduce themselves to someone they didn’t know.  We believe in the power of positive influence and all these people had something to offer someone else.  I closed with several definitions of the word “Angel” when used in the human sense and the description that stood out the most was the act of being selfless.  We were definitely among angels on this night!

In a shroud of secrecy, three of our student volunteers from Cherry Creek High School and founders of their Extra Hands for ALS club had been planning a presentation and video for the gala.  At last we were able to hear and see the fruits of their labor and love.

They had prepared a heartfelt speech in which Addie, Cynden and Aly all had roles.  The words spoke from their heart and touched us deeply.  A standing ovation followed and then their video presentation.  They had interviewed several Extra Hands families, mentors and volunteers.  The participants expressed their sincere gratitude for the program in a way that made it real for all guests attending.  We have watched it three times since the gala and are continually moved.

This turned out to be one of the key elements in the program.  It showed how much these students were emotionally involved in Extra Hands and the people they are affecting.  It was also evident how they were affected in such a positive manner by the families and mentors involved.  That is the magic of this organization.

The live auction ensued with the donated items of a Lasik eye procedure, a bronze angel sculpture, professional wall glazing, a week stay in High Country Club property and finally a private plane ride over the Rockies.  The auction was a bit confusing, but fun and quite successful.

Extra Hands has partnered, in essence, with an ALS research laboratory called the ALS Therapy Development Foundation (ALSTDF), located in Boston, Massachusetts.  Mat Mendel, Event Development Director, introduced a video from the Founder, Jaime Haywood of ALSTDF in which he described the efforts of their organization and the importance of research.  Mat arrived a day early to help and his presence added even more integrity to this event.  This was followed by an auction for research minutes in which over $12,000 was raised!

It was a long program, but with all the right features.  We were able to recognize some very inspirational people with trophies for Outstanding Students (Addie, Cynden and Ally), Mentor (Lisa Terry) and Family (Chris Hoeffner) as well as special recognition for Courage (Ellen) and participation (Suzanne Bellis) in honor of her late husband John Bellis.  She sponsored three tables of ten for the gala.  We were also able to recognize our own student volunteers, Carly and Allie, who opted to forego their Senior Homecoming in order to attend this event.  That meant more than they will ever know.

One by one the student volunteers present at the gala were invited to come forward for a plaque presentation.  Nineteen students shared the stage.  It was incredible to have them there and show the audience that these lives were a large part of why they were there supporting Extra Hands for ALS.  Mentors were then recognized in the same manner for their dedication to the organization.  Thank you, all.

With that, the formal program closed and the rest of the evening was opened for dancing to the music spun by DJ, Barry Sterling from Sterling Entertainment.  Most of the students jumped right in with many others and then the night ended all too early.

We simply cannot thank everyone sufficiently for their participation with this event.  We had an incredible team of gala committee members along with volunteers who gave up their Saturday night to work during the evening.  Over a dozen companies donated services and there were about 100 individuals and/or companies that donated items for the silent and live auctions.  The attending guests were both generous and gracious and hopefully had a joyous and memorable time.

Finally, we got to honor the people that make Extra Hands for ALS more than just a vision and turn it into a reality that is changing lives for the better and making a real difference in the fight against ALS.  Pictures will be added to our site, shortly.  Thank you all for this very special night.

P.S.  Just in case anyone was curious, we grossed over $88,500 and netted almost $70,000 with funds still trickling in!  That is a return rate of over 78.5%.  Not bad for a first year event.  Wait ‘til next year.  We can’t wait to see you there!

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Missing in Action

It has been so long since we have posted anything, there are probably many of you thinking all sorts of things.  The lack of communication is not indicative of my health, thank God.  My progression remains blessedly slow.

The title of this posting is extremely accurate as we are in the midst of an incredible amount of action due to the planning of our Angels for ALS Gala on October 14th.  We are nervous, anxious, excited and blessed now that we are in the month of the actual event!!!  It is like planning a large wedding and asking people to pay to attend.  Just for fun we’ll add live and silent auctions!

It has been busy, but very fun and rewarding.  We love our volunteers!  Thank you to all who have helped with either planning the event or donating in kind or auction items.

For anyone wanting more information on the gala, we have updated our site with the logo on the upper right side of the main screen.  Simply click on the Angel’s Wing on www.alsliving.com.  All are invited, but we do need to get the final numbers in by the end of this week for the caterer!!!  So please, if you have any interest in attending you can register online with the link at the bottom of the event description.  If you are unable to attend, please consider a donation and proceed in the same manner, but choosing “I am unable to attend…”  You can always contact us if you have any questions.

FYI, the bicycle from the Tri-State Trek is still in the box!  Thank you so much for supporting us with that effort as we did meet our goal of $6,000.  Yea!

 

More Reflection and Christopherism columns to come after October 14th!

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Jennifer’s Trek Reflections

I did it!!!  I can’t believe I actually made the entire 270 miles, but I did.  I could not have made it without the support of so many.  First and foremost, God. The support of Steven has truly been a Godsend from the beginning of training to the very end. Of course, I can’t forget all of our friends and family that have helped us along the way as well as the volunteers and staff at the Tri-State Trek and ALSTDF.

The first day started out with a big hill. Just getting out of the hotel parking lot, many people fell so I just waited back in the pack of 70+ riders.  Gearing down and pedaling hard I made it up that first hill just fine. The gentle mist, wonderful cool temperatures and rolling hills made the first morning not too bad.  I hung out with Ted (our friend, Angie’s brother from Boston).  He is a far better rider than me and he provided great tips for the upcoming challenge.  Beautiful scenery, great little towns, and then the first rest stop (rest stops were set up every 13-21 miles) seemed to come in a blink.  I was starting to think I can do this; maybe I did prepare enough.

Then right before the lunch stop the sun started shining through with high humidity.  This creates a heat index.  Something people from Colorado are not that familiar with.  Think of wind chill then reverse it.  The temperature seemed to rise dramatically and really slowed me down.  I drank as though I had never drunk before and I ate more than I have ever eaten in any three days of my life.  Every rest stop the first day I had an Uncrustables (a no crust peanut butter and jelly sandwich from Smuckers) and fresh fruit with plenty of Gatorade and water.

I was hearing about the hill at the end of the day, but nothing could have prepared me.   I was in the lowest gear possible and wishing for more, but I made it up the hill.  Towards the end, I wanted to get off my bike because my legs were burning and I was incredibly winded  I just kept thinking of all those who can’t ride and have died from ALS and started crying.  Those angels really helped me up that hill.  It was amazing sight seeing Steven at the top of the hill ringing that bell saying “Great job Jennifer, I am so proud of you.”  We pulled into a room where all the bikes were to be held.   I got off and started bawling (kind of like when we were diagnosed.)  I told Steven that all I could do is think of all the people that have died from this terrible disease and I wasn’t going to stop.

So we headed for the dorms.  We were in Storrs, CT at the University of Connecticut, UConn for short.  They were nice and clean with sheets and towels provided.  The shower felt sooooo good.  I have to admit that it felt like when I gave birth to Christopher.  My legs were shaking, I felt like I had to throw up, my knees hurt so bad that I couldn’t sit on the toilet and my shoulders felt like they were up to my ears.  I got dressed (didn’t do my hair or put any makeup on) and headed to my massage that Steven had so kindly set for me!!!  It was great, and after 11 hours of riding I just wanted to head to bed.  I had had it.  But Steven said no, you have to eat something.

We went down to the eating area and I got a little food down, still feeling terrible.  I remember telling Steven that if I feel this way tomorrow it wouldn’t be possible to ride.  On the way back to the room we ran into Mat (the Event Coordinator.) He said he would send up the nurse to check on me.  So in the room Mary Beth came to my rescue with a little help from Steven and Ty.  With both knees iced and elevated while trying to eat some crackers, I went to bed.  I know some of you are thinking I might have been dehydrated but I don’t think so because I went to the bathroom 5 times that evening.  Well, about 4am I woke up and was feeling quit a bit better.   Still sore, but I was determined to ride, so I Chamoise Butt’rd (slippery goop for a rider’s groin area) my bike shorts and went back to bed until 5:30am.

I woke up and got dressed, figuring if I can just make it to the 1st rest stop, maybe I would quit there.  We lucked out with another cool start, but this time a bit more rainy.  Ty hung with me most of Saturday and I started out with my knee brace on.  Most everyone was moving a little slower on the second day, but just as determined.

The most motivating person I met for the day was Daryl Goss with his girlfriend Robin.  Daryl was set to ride the second day and so was Robin until she injured her knee two days before the ride, but it worked out good for us because Steven rode with her that day.  You see Daryl has ALS and was riding!!!!!  What an inspiration he is to me and so many others.  While on the ride we talked a bit.  I remember we were waiting for the ferry to take us across the CT River and he asked if I was really selling my bike after the Trek was over.  I told him yes and that riding didn’t fill my soul.  It was a lot of work for me and very lonely.  It seemed to represent what it is going to be like when/if Steven is gone and I’d rather put on a headset of great music using our Nordic Track at home for an hour and call it good for the day.  Anyway, it took too much time away from Steven and Christopher training and I felt extremely guilty leaving all the time.

Daryl seemed to be kind of miffed at my response but didn’t say much.  Later that day he told me that he thought about it and told me that it means more that I did this ride because it is something I don’t even enjoy and to train so hard and do such a long ride so unselfishly he highly admired me.  I thanked him and told him how much I admired him, and he said he loved to ride!!!

Saturday was a much easier day on the whole but it was very still difficult for me.  There were several large hills, but not like the prior day.  The big issue for Saturday was the rain.  It was really coming down and I had never trained in the rain so I was especially scared going downhill!  With the help of Ty saying don’t think about completing to entire ride just little legs you can do it.  It reminds me of ALS or any other disease if we think about the entire disease it’s overwhelming and seems impossible.  If we take each day as it comes we can make it through it!!!

Saturday was the day of incredible views as I especially remember being right next to the ocean.  It was the day we called our riding troupe the “scenic group” because we would stop and take pictures together at great spots.  Our group consisted of Shannon, Tracy, Ty, Ted, Sylvia, Diane, Andrea and Billy (our ride marshal), with Mike coming in and out and many others at times.  We worked well together and really helped each other when needed.

The second day ended at University of Southern Connecticut after another 11 hours of riding with much poorer room conditions than the night prior.  I physically felt much better than the night before and actually dried my hair and put some makeup on after my shower.  The massage therapists were awesome, for both nights I had Bill who I “LOVE.”  He was great and took extra time with me each night…thanks Bill.

 

After very little sleep, we woke up at 4am so we would have time to eat and have it digest a bit before riding.  We were told that the slower riders had to start early since we needed to be at the staging area by 2:30pm, so our group decided we would leave at 5am.  It was still a bit dark and besides a little stop to fix my seat we were off.  Well, only two miles into the day we were given a huge hill!!!  I made it three quarters up the hill before my calf cramped up.  Ty stopped with me and we walked the last bit to stretch out.  I was on an adrenalin rush all Sunday knowing that I could make it.  Sunday was another day filled with hills both up and down; I think I actually went over 38 miles per hour which is the fastest I have gone yet.  Incredibly scary to say the least, but you start thinking that if I don’t get going it’s just going to be more work for the next uphill.

The third day was also the day I got to try out my tire changing skills.  I had never really changed a tire before, but during training a friend and I took a class at Bicycle Village on bike safety which included how to change a tire.  Luckily, I wasn’t by myself but I am sure I could have done it.  Ty was with me and said “well let’s call Rick to change the tire.”  I said no and that I took a class and knew how.  Ty really helped a lot, but when we looked down for my pump, it was missing, at some point it must have fallen off the bike.  So we had to wait until Harold came by with his CO2 pump which made the inflation much easier.  But I/we did it, and we were back on the road in no time at all.

Rest stops were well supported and after that first day I stopped eating Uncrustables and starting eating Clif bars (an organic energy bar) and fresh fruit.  Butt balm was all our best friends.  I do have to say that by the third day my butt and girl region were quit sore, but bearable thanks to butt balm.

There was an incredible hill that everyone kept talking about all day starting on Jon’s street.  It was at the end of day three; I was becoming more tired and just planned on walking it.  I made sure everyone was aware of my plans so as not to have anyone worry.  When we got to the hill, Ty was in front of me and said that he was going to pull off and walk; something or perhaps someone else (hmmm….) had other plans for me.  It was like I was being pushed up that hill by angels.  I just remember saying to myself just keep going.  It helped having people cheering us on every hundred yards and I made it.  With huge tears rolling down my face, I knew all my angels helped me up that hill.  Ty later told me I actually got faster as I went up the hill.  It was amazing, a definite “God moment.”

The rest of the ride about 10-13 miles, was pretty uneventful.  When we all rode in to the finish together in White Plains, NY, I got off my bike where Steven and I hugged and cried for I don’t know how long. We cried for so many reasons.  For me, I couldn’t believe I actually made it.  I was so proud to do this for so many; so thankful of all that had supported the ride; so thankful of all that supported and prayed for myself and all the riders for the weekend; thankful to experience the feeling I had and finally to have such a wonderful husband to be there for me.

It was incredibly nice to see Jim Presbrey, our Extra Hands COO, and his wife Joann who drove 1 ½ hours just to pick us up and take us to another friend’s home who lived another 45 minutes away, only to drive back home, we feel so blessed!

I have recovered better than I expected.  I actually worked out Thursday morning (back on the Nordic Track.)  Steven and I actually went for massages as well.  Overall I discovered during the ride that instead of feeling this was God preparing me for the future without Steven, now I have the feeling that I have so much support from so many sources that I don’t even know about.  Special thanks to Team Bishop for all you have done. Thank you to all that have supported us for so many years.  Also, for those of you who continue to support us.  I know there is a long journey ahead but I can’t be focused on the end result.  I only have today to make it through, which I guess that’s what we all should do, because the future is not guaranteed for any of us.

It WAS the hardest thing I have ever done and don’t plan on riding again next year; however, I would love to support the riders!!  I assimilate my ride to having Christopher everyday for three days.  I hope that gives perspective of my feelings!!!  I am so glad I did it as it was an amazing experience. It will forever be something I will look back on when I need extra strength and be able to pull from.  Thanks Mat and Jim for talking me into it last year…..God Bless

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Jennifer’s Trek – She Made It!!!

Jennifer conquered 270 miles, three states, insane hills, high humidity, high anxiety, pouring rain, extreme pain, early hours and dorm rooms.  She got a flat tire, the rear one, of course and changed it herself (with a little help from fellow riders. Her tire pump fell off at some point.)  I’ll leave the rest of Jennifer’s details for her to express in a future posting.  I simply could not do justice to what she went through to accomplish this feat.

As far as my details; honestly, there were times when I felt so useless, because I couldn’t ride or even help much.  I struggled as the ride proceeded with fatigue and pain from too much walking and standing, yet I survived.  That’s not what this posting is all about.  By the end, I realized how selfish those feelings were.  Overall, it was an emotional, humbling and inspiring event.

I was so happy to have been able to participate in the whole ride this year as I saw the event truly unfold and reveal itself.  It was like popping the cork on a bottle of wine; smelling and tasting it develop as apposed to just looking at a bottle sitting on the shelf as in the previous years when Jennifer and I just spoke the night before the ride and had to leave the next morning.  (Sorry, I had to get a wine reference in the article somehow!!!)

 

Last night, I thought of some things I wish I said to all the riders, volunteers, sponsors and our event coordinator, Mat Mendel.  I’ll do that now because I think a lot of what I have to say applies at least in part, to all the people reading this posting.

After the ride, most everybody settled under a tent at the finish line in White Plains, NY for some dinner and a few speakers.  I surveyed the crowd and began to tear up.  These people just worked their butts off, some literally, for the last three days.  There were months of preparation leading up to the event including training and incredible fundraising efforts.  Some people participated to honor a loved one lost to ALS, others to support those still in the battle and still more simply out of the goodness of their hearts.

I am humbled by the fact that all of this took place to raise money for ALS research via ALSTDF.  This action benefits me directly by providing me hope for a treatment or cure, possibly in my lifetime.  Attitude is everything when dealing with this disease and hope is the cornerstone.

I am inspired by the overall goodness in people and the extremes that they are willing to go to even if something doesn’t affect them directly.  It’s easy to turn a cold shoulder with all the negativity that permeates the media.  When you experience an event like the Tri-State Trek and the people that are involved, you can’t help but be in awe of the power of humanity.  The more we work together, the more we can accomplish.  Jamie Haywood, founder of ALSTDF, mentioned at the closing ceremonies; what a better world we would live in if more people would ask, ‘How can we help?’ versus, ‘What do you want?’

Most of all, I am grateful.  I am grateful to all the people who worked so hard to make this event possible.  I am grateful to everyone who rode their bikes and fundraised.  I am grateful to all who sponsored, whether corporately or personally.  I am grateful to ALSTDF for their determination in finding a treatment or cure.  And finally, I am extremely grateful to Jennifer for being my hero and pushing herself far beyond anything she could have imagined and finishing this ride in my honor.

Jennifer had many moments of struggling, but you can ask anybody I talked to and they will tell you I never had a doubt that she would finish.  She had the prayers of hundreds of people for safety and strength.  She had her angels of those we have known that have passed away from ALS.  She had the support of all who are reading this now.  Thank you, everyone.

WE ARE SO PROUD OF YOU, JENNIFER!!!

XXXXXXXXOOOOOOOOO

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Jennifer’s Trek

Two weeks from today, Jennifer will be crossing the finish line for the 4th Annual Tri-State Trek.  It has been a while since I wrote about it so feel free to click on the link to find out more.

Let me first add some perspective to the situation.   We have been the motivational speakers for this event for the last two years, an honor to be sure.  Somehow, she was convinced to ride in this year’s event by the riders and event coordinator from last year.

It’s easy to say “Yes” when it is a year away!

In no way do I mean this to be insulting, but Jennifer is not an athlete.  She takes pride and feels good working out for a few hours a week, whether it’s walking with a friend or using our Nordic Track.  Cycling is not and never was even an occasional activity.  Yes, we had mountain bikes that I think we rode a handful of times, but they still have the little rubber knobs on the tires!  The bottom line is that this ride is WAAAAYYYYY out of her comfort zone.

I really need to put Jennifer’s efforts into writing as I think it will make me appreciate them even more, it that is possible.  She has been training on our Nordic Track since August of 2005, three to four times per week.  In November of 2005 she joined a “spinning” class designed to simulate riding, build the correct muscles and perform cardio-vascular training.  The first gym changed from paying by class to requiring an expensive full membership.  The second gym had a reasonable membership price with great classes and then promptly went out of business after 5 weeks.  It was late March at this point, so we decided to buy the road bike Jennifer would need for the ride.  This way, she could experience actual road conditions and get used to her bike at the same time.

The main psychological reason Jennifer is doing this ride is similar to many other riders.  The premise being that if ALS patients can endure their symptoms and circumstances  daily than surely 270 miles of cycling and 3 days of physical and emotional stress can be tolerated by one in good health.  It doesn’t hurt that we are raising money for ALS research!

I cannot imagine what she will go through or quite frankly, all she has already experienced in preparation for this ride which it is so out of the norm for her.  I know she is dedicated, overwhelmed, nervous and scared.  She is frustrated with the amount of time training takes from all the other things she feels responsible to do.  All prayers are welcome for Jennifer, but most of all for her safety.

Several people have asked how to sponsor her so please click on Sponsor Page and make sure you put her name and rider number 44.  We ask for your financial support at various times throughout the year, so please do not feel obligated if this particular effort does not call you.  This is just one of those opportunities.  To those that have already generously sponsored her, thank you so very much.  The money Jennifer is raising goes to ALSTDF for ALS research.  We know the people in this organization personally; they are very dedicated as well and are doing an incredible job with their work.

To Jennifer,

I am so incredibly proud of you.  The dedication you have shown emphasizes one of the characteristics in you that I love so much.  Your willingness to participate in this event and follow through with it inspires me to continue my fight with unending vigor.  Thank you.

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New Therapy

After five years of living with ALS, most people know we’ve developed a fairly dark sense of humor.  It was common to hear the phrase, “I was hoping to be 6 feet by the time I was 40; I just didn’t think it would be 6 feet under.”  Jennifer also received a considerable amount of grief for not letting her only child and dying husband have a dog.  Humor is a strong weapon against this disease even if it’s in the dark sense.

Funny how things change.  I’m now 41 years old, still in the ALS fight, but have remained only 5’7” tall.  I can’t use my 6 feet under joke anymore and now…we have a dog.  Yes, you read correctly.  On Friday, April 28 at 7 p.m. a puppy Bichon Frise was delivered to our door.

Christopher and I had been working on Jennifer for quite some time.  She was constantly barraged with the dark humor joke.  The ice was slowly melting as we kept visiting friends that had dogs.  Christopher’s eighth birthday was coming up and he proclaimed his responsibility of being able to take care of a new dog.

Research ensued via the Internet, pet stores and friends.  One of those friends just happened to have a Bichon Frise.  The cuteness and wonderful temperament of Sophie were hard to resist.  That was quite awhile ago but the memory lingered.

In all fairness, Jennifer loves dogs.  It was really the prospect of taking care of Christopher, me and a brand new puppy that overwhelmed her.  I can’t blame her for that.

Jennifer found a breeder in Longmont, Colorado that had one male Bichon Frise left.  It had all it shots and even a microchip implanted for identification.  As it turned out, the breeder decided he was too cute and kept the dog for himself.  What a bummer.  That would have been too convenient.

Jennifer decided to call our friends with Sophie and find out where they got her.  They had apparently referred this breeder to several other family members, all with joyful results.  Unfortunately, he was in Nebraska.  Jennifer thought that he might know some breeders in Colorado so she gave him a call last Tuesday.  As it turns out, he had two male dogs and happened to be coming to Denver on Friday.  Jennifer hung up both excited and nervous.  He sent us the following picture: click here.  Christopher’s birthday is May 5th and the an early birthday present just landed in our lap, literally.

For the next couple days, while Christopher was in school, Jennifer and I spent time shopping for dog stuff.  We had to buy books, a kennel, food, snacks, toys and yes, carpet spray for those accidents sure to come.  The financial commitment of a dog just slapped us in the face.

Christopher did know that we were looking for a pet but really had no timeline or immediate expectation.  As far as he knew we were still considering fish or maybe a guinea pig.

Jennifer was leaving for a women’s retreat with Cherry Hills Community Church in Breckenridge at 5 p.m. Friday.  The breeder, Norm was trying to get here from Nebraska by 4 p.m. so Jennifer would be able to meet our four legged friend before she left.  Norm called and was not going to be in town until later, so Jennifer missed him and didn’t return until Sunday.  She was kind of sad, but at the same time we were chuckling at the irony that Christopher and I wanted a dog, we got one and Jennifer was leaving for the toughest two days of adjustment.  Poetic justice!

Christopher had already been talking about what name he would give a pet if he got one.  When Norm arrived that evening, Christopher thought it was a cute dog and was petting him gently.  I had the video recorder on and announced that Mom and Dad wanted to wish him an early Happy Birthday and it was his dog.  He looked back at the camera blankly and asked, “This is my dog?” and, “I didn’t know that!”  Christopher asked if he could name him and much to our surprise…NOT…it was C.J., short for Christopher Jr.  They took to each other quite quickly even though C.J. was a little scared and timid.  Bichon Frises are known to cuddle and that’s all he wanted right now.  Christopher was more than happy to oblige.  We decided that C.J. could also stand for couch jockey.

The first two nights were accident free, but not uneventful.  Friday night, there was no whining like a puppy missing his mother or littermates, simply a small whimper to wake me up and let him outside.  It was about 2:30 a.m. and he did his thing during playtime for about a half-hour.  We went back inside to cuddle so he would get tired again.  The next night he woke up twice, one time even waking Christopher.  Christopher tried to get him to go back to sleep but to no avail, he wanted to play and eat.

Jennifer came home early Sunday afternoon and was overjoyed to meet C.J.  It didn’t take her long at all to bond with him.  Christopher and I told her of our adventures during the weekend.  She had had a wonderful time as well, but was happy to be home to greet our new puppy.  Oh yeah, she missed us too.

The final irony in all this is when the time came, Jennifer really ended up doing 95% of the work in finding C.J. and she is just as thrilled about this dog is Christopher and me.  She’s really just a softy with a big heart…but, we already knew that.

I have to work on some new jokes to keep the dark humor going!  Welcome to the family, C.J.



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Out of the Mouths of Babes

I was joyfully overwhelmed at the number of responses I received from my “Five Years” posting.  I can’t begin to tell you how much all the well wishes mean to me.  I apologize that I have not been able to get back to everybody.  Thank you so much to everyone who took the time to write and everyone else for their silent thoughts and prayers.

I have to share a quick story with you.  I was having a frustrating day last week as my left thigh decided to spasm and twitch for several hours.  Think of this is as continual use of a weakened muscle for an extended amount of time.  Some of you may know this is one of the symptoms of ALS.  My leg was quite exhausted so I decided to take a rest, put my legs up and watch some TV.  Jennifer and Christopher joined me.

Jennifer knew my leg was bothering me and came over to see if massage would help.  This got Christopher’s attention because of his similar compassion and he wanted to help.  I wanted to show him what my leg was doing and why it was so exhausted.

The first thing he said when he saw the muscle spasm over and over again was “It’s beeping!”  I never quite thought of it like that, but it certainly added some levity to the situation.  He then proceeded to help Jennifer massage my leg.  I know I can always count on Christopher to make a situation better.

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Five Years!

Imagine getting told that you have only two to five years left to live, get your affairs in order, and don’t plan anything more than three months in advance.  What would you do?

It was five years ago today that I was formally diagnosed with ALS.  I had a total of three opinions, the last of which was requested by the one and only Jerry Lewis.  He refused to believe that I had ALS and set up the third opinion with one of the leading ALS neurologists in the country, Dr. Stanley Appel from Baylor College of Medicine in Houston, TX.  Even Jennifer allowed herself the thought that they might be wrong with my diagnoses.  I had hope, but I knew in my heart it was ALS.  I had every symptom, it was just moving slowly.  Unfortunately, Dr. Appel had to make the call the Jerry Lewis that it was indeed ALS.

Statistically, I had an 80% chance of being dead by today.  I haven’t been in the top 20% of much, so I’ll take the top 20% of survival!  Today is the completion of my first goal I set after my 40th birthday, making it to five years.

I have been to more funerals than I thought I would attend in a full lifetime.  The vast majority of these were for people diagnosed with ALS after me.  I’m astounded by that fact.  On occasion, I also experience a sense of guilt that I’m still here.  I’ve been told that I shouldn’t feel that, but I do.  The other side of that is the experience of being truly blessed.  That, by far outweighs the guilt, I assure you.

Physically, I’ve been told I look quite similar to days gone by.  I wish I felt that way.  My progression is quite different from that of most of my ALS comrades in many respects.  The doctors and textbooks say that pain is typically not a symptom of ALS.  Technically, I would agree that the loss of motor neurons is not painful.  However, for me, the loss results in a constant level of discomfort in the form of twitches, spasms, cramps, fatigue, joint aches, soreness and sharp pains.  Many ALS patients do not experience pain, but most have a steady stream of muscle function losses leading to paralysis.  Some patients have both.

I have not yet had a complete loss of function in any particular limb, speech or swallowing.  However, my endurance in these areas has been dramatically compromised.  Muscle loss is evident in my arms, shoulders, hips and legs.  I cannot stand or walk for long periods and use a wheel chair for extended walks, i.e. airport, malls, etc.  There has been a couple choking incidents, leading to more cautious habits.  Personal hygiene is manageable, but can be exhausting and frustrating.  I find I can start many things only to succumb to fatigue.

I have not driven in 4 1/2 years, primarily do to the frequent repetitive movements and endurance required.  The last time I drove was to take Jennifer to the hospital for an emergency Appendectomy.

Due to breathing difficulties, I have been using a BiPAP (Bi-level Positive Air Pressure) machine for 1 1/2 years.  This noninvasive ventilation is used at night, frequently by sleep apnea sufferers.  There are actually clinical studies being done to test whether early intervention with BiPAP leads to enhanced longevity.  This machine essentially allows all my breathing muscles a chance to rest while I sleep.  I still get winded doing simple things like even talking too much.  That may come as a relief to some of you!

The ALS Association was kind enough to purchase a specialized mouse for me.  The brand is RollerMouse and puts the mouse capabilities right below my keyboard, minimizing my shoulder movement.  I have written the last several postings using voice recognition software called Dragon Naturally Speaking.  This is on loan from ALSA as well.  It allows me to dictate into a microphone, correct words or phrases, all without touching my keyboard.  The common theme to all this is energy conservation.

The reason for writing this physical summation is not for pity.  It’s more for my own reconciliation of where I’m at after five years.  It may sound like a lot, but considering the alternative, I am very, very lucky and thankful.

I’m beginning to understand why this disease is so difficult to research.  It manifests itself and progresses so differently in each patient.  It has to be difficult to find patients that are similar enough for clinical studies to have meaningful results.  Why do some people have limb onset ALS while others have bulbar symptoms first?  Why do some people have pain and others not?  How can there be a sporadic and a hereditary type?  Why are there fast progressions and slow progressions?

Emotionally, I’ve never been stronger.  I feel I have lived more in the last five years than many people do in a lifetime.  I did not grow up with any religious background.  It has grown over time and curiosity.  My belief in God and Jesus Christ as my Savior has blossomed and I am comforted by where I am going next.  Everyone is on their own spiritual journey.  I respect them all.  I guess I feel that if I am wrong in my beliefs than what harm has been done me?  I have lived happier, more lovingly and been comforted by it.  I do not fear death which allows me to concentrate on this life.  There are many things I give credit to for my slow progression; specifically many prayers, my family and friends, low stress and a positive attitude.

Jennifer and I continue to feel oddly blessed by this disease as it has changed our life perspective for the better.  We have been immersed in the ALS community for a long time now and to varying degrees.  We started with the MDA and continued with Northwestern Mutual Insurance, the ALS Association, Tri-State Trek and the ALS Therapy Development Foundation.  We now continue with our mission by launching Extra Hands for ALS in the Denver area starting last November.  The feeling of positively affecting other people’s lives is intoxicating.  It has brought a stronger, more meaningful purpose to my life.

I could not do any of this without my wonderful bride, Jennifer and incredible son, Christopher who give me inspiration everyday!

On to the next five years…

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Simple Pleasures

On Monday, February 27, Christopher came home with a folder full of letters from his fellow students.  These letters contained requests for me to read to their class.  Some of them were short and to the point, while others were elaborate including drawings and questions about me and things I liked to do with Christopher.

Now Christopher’s teacher is the kind that you remember for the rest of your life.  She loves the parents to be involved with their children.  One way to accomplish this was to invite parents to read to the students for about twenty minutes in the morning. I have to say it’s pretty difficult to say no when you have almost twenty letters from second graders requesting it.  I found out I was the first parent to be invited and was quite honored.  Friday, March 3 was decided to be my day for reading.

The night before, I carefully went to Christopher’s bookcase and selected several options.  One book was too long, another too simple, and then the perfect book revealed itself.  That night, Jennifer was the lucky one, and apparently in Christopher’s prayers he requested that I didn’t embarrass him in front of his classmates.  Jennifer shared that with me when we went to bed.  No pressure!

The next morning Jennifer drove us all to school.  I walked into the classroom and watched all the morning rituals of a typical second-grade class.  The students have a board where they are supposed to record their own attendance and select which lunch they want.  Their teacher calmed the class down and made several announcements.  And then it was time to watch the TV where a couple of older students give the school wide news and lead the Pledge of Allegiance.

I was then introduced as the guest reader.  Christopher was all smiles.  Then each of the 21 students introduced themselves with a handshake and their name, and promptly sat down in front of me.  I thanked them all for inviting me and all their wonderful letters.  Answering some of their questions from the letters, I told them my favorite color was blue, and that my favorite thing to do with Christopher is hear him laugh.

Hoping I had their attention, I finally showed them the book I was going to read, Scooby-Doo in the haunting mystery, “Howling on the Playground.”  I tried my best so that I wouldn’t embarrass Christopher.  I had a little bit of difficulty holding up the book while showing the pictures and reading as my shoulder muscles fatigued, so the book was a little shaky.  All in all it went very well and I did get a pretty good laugh out of my Scooby-Doo voice.  When Christopher came home that afternoon I was presented with twenty one thank you’s in the form of bookmarks.

I feel so incredibly blessed that even after almost five years of being diagnosed with ALS, I am still be able to go into Christopher’s classroom, interact and experience the sheer joy of participating in my child’s life.

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