Sat 18 Oct 2008
Posted by
October 18th, 2008 under
General[11] Comments
Last week Wednesday, on October 8th, 2008, President Bush signed into law Senate Bill 1382, The ALS Registry Act, which will create the first ever national patient registry of people with Lou Gehrig’s Disease (ALS). The registry will compile information to help decipher the cause, appropriate treatment, and finally the cure for this horrible disease.
This was a bill that Nick was very passionate about; he posted about this Act on the blog more than once and encouraged us all to write our Congress members to ask for their support in getting this passed. After almost 4 years of advocates lobbying for this bill, it was signed into law late on the afternoon of October 8th. That day may ring a bell for some of you, as that same day, Nick would have turned 29 years old.
Although it is sad that Nick was not here to see the Act that he fought for finally make it into law, it is a tribute that it happened on his birthday.
Mon 28 Jul 2008
Posted by Ann
July 28th, 2008 under
General[7] Comments
Nicholas ‘Nick’ Aron Huber 28, of Alta, Iowa passed away Saturday morning, July 19, 2008 at Buena Vista Regional Medical Center from the result of injuries sustained in a motor vehicle accident and complications from ALS (Lou Gehrig‘s Disease).
Nick was the youngest child born to Allen “Jack” and Karen Huber of Menno, South Dakota on October 8, 1979. He attended Menno Public School while being very involved with oral interpretation, music and FFA. He showed passion for the game of baseball, playing since the age of six through his freshman year of college. He graduated high school in 1998 before attending Luther College in Decorah, IA. Nick, a communications major, was very involved with the sports information department at Luther. He got interested in radio broadcasting, covering not only college sports, but many area high school games over the radio. Nick was involved with the Luther choirs as well as hosted a weekly KWLC sports talk radio program.
Upon graduation from Luther in 2002, Nick was a graduate assistant in sports information at Gustavus Adolphus College in St. Peter, Minnesota while working towards his masters in Sports Administration at the University of Minnesota Mankato. After Nick was diagnosed with ALS he married Ann Jorstad, whom he met while attending Luther College, on November 28, 2003. They lived in Denver, Colorado until his dream job took them to Northwest Iowa.
From August of 2004 Nick excelled as the Director of Sports Information at Buena Vista University until July 1, 2007 when his ALS progression forced him to begin a career of writing from home. He supported a blog on his website as well as writing a weekly sports column for the Storm Lake Tribune. He had faithful readers worldwide as he shared his opinions and passion for topics ranging from sports and democratic politics to advocacy for ALS research and everyday life.
Nick is survived by his wife Ann Huber; his parents Allen (Jack) and Karen Huber of Menno, SD; his brother David Huber (Marlys) and sister Kim Niedringhaus (fiancé Joe Herdina) of Sioux Falls, SD; his sister Karla Anderson (Mike) and sister Penny Mattson (Kurt) of Denver, CO; his father-in-law and mother-in-law Larry and Lana Jorstad; his sister-in-law Rebekah Tarras (Jeff) and brother-in-law Joshua Jorstad; his nieces and nephews Amanda, Matthew, Jennifer and Jacob Huber, Ben, Whitney and Anya Anderson, Luke and Nicole Niedringhaus and Eva Mattson. Nick is also survived by many aunts, uncles, cousins and countless friends.
Nick is preceded in death by his grandparents Walter and Linda Huber and Alfred and Mabel Sorlien.
Funeral services will be held Tuesday, July 22 at 11:30 am at Schaller Chapel on the Buena Vista University Campus. A visitation with the family will be Monday evening, July 21 at the Nicklas Jensen Funeral Home in Alta, IA from 5pm – 8pm. Nick has requested memorials be directed to the ALS – Therapy Development Institute or www.als.net.
Sat 19 Jul 2008
Posted by Ann
July 19th, 2008 under
General ,
Health[52] Comments
This morning I witnessed a very majestic and peaceful passing of my soul mate. Nick took his final breath around 6:30 am with me and a nurse standing by. The planner that Nick was, has already set most of his final wishes into motion. There will be a visitation at the Jensen Funeral Home from 5pm - 8pm on Monday, July 21. This is located just down the street from our home in Alta. The Funeral will be held at the Schaller Chapel on the Buena Vista University campus at 11:30 am on Tuesday, July 22. There will be a luncheon to follow provided by BVU.
Nick has requested that in lieu of flowers, memorials be sent to the ALS Therapy Development Institute to support ongoing ALS research. Donations can be made online at www.als.net if that is most convenient.
Tue 15 Jul 2008
Posted by Ann
July 15th, 2008 under
General ,
Health[44] Comments
Nick is laying very peacefully next to me tonight. I feel like sharing that because it has been the one thing he has wanted for quite a few days now. We have battled a lot of things, but secretions, saliva and mucous are never going to be a PALS (person of ALS) friend - especially in a cervical/thoracic collar. Even up until this morning we had every intention of getting Nick in the wheelchair to get him home hopefully by mid-week. However, the last two days have been a constant battle with a cough and some thick secretions that have required suctioning and have created enough of a panic for Nick. One of Nick’s final wishes was to not feel that fear and panic as if he was suffocating or drowning. We have had a plan in place since we first talked about end of life stuff and planned our funerals. Oxygen, narcotics and muscle relaxants are very dangerous for ALS patients because they depress the respiratory system and the drive in the brain that keeps them breathing. We have avoided these things thus far in order to keep him where he was prior to the accident. The use of these things, however are what make those ALS patients and many others most comfortable in the end of life. In most cases the respiratory system is the most fragile and what will ultimately fail for them.
Nick being the fighter he is felt like he was letting people down by telling us he couldn’t deal with this coughing anymore. He made sure that he wasn’t disappointing me and his family by taking some medication to make him feel more comfortable. His parents and I sat with him and shed a few tears, but ultimately reminded him that he wasn’t ‘giving up’ or that he was disappointing us by going along with his wishes. Today after his last two sisters arrived from Denver, and the entire family was present you could see the peace that washed over him. He talked with me alone a couple of times and had to ask me some questions about whether I would be okay etc. When he felt okay with my answers then he said ‘good, then I am going to see the joy in this time now’. A little more aloof and relaxed, Nick spent the afternoon listening to stories and slipping in his usually witty comments. At one point there was a lull in our conversation he said ’so, are there any family secrets I need to know?’ It was just the perfect line from him and for the moment.
The coughing reared its ugly head still intermittently so we got a more sedating medication ordered. This will allow him to rest and relax a bit more and perhaps he will have a larger dose tomorrow. Tonight he took his usual ambien with this med and was slurring his words within minutes. He had quite the goofy smile on his face and was talking about the most random stuff. We spent the forty minutes prior just cuddling and talking and of course sharing our tears. Those are the moments that I will remember forever. Earlier in the week he told me that even if he gets gunky and has a hard time breathing and doesn’t make it home at least he got to spend this week with me. Its almost like he knew. I am sure he is including his family in there as well. Its pretty special to be surrounded by this group.
Talking with the hospice team today they asked me if there was anything they could get for Nick or do for him. I mentioned Ylvi coming up for a visit. Those two have spent the days that I have worked, alone in the house taking care of each other. I have forever been amazed by their bond - especially Nick the cat person. Ylvi came for about 3 hours this afternoon. She jumped right up on Nick’s bed and was licking and nuzzling him. She laid right down next to him and buried her nose under his arm. She kind of whimpered a few times and then just relaxed. A little while later I had her jump up again and she fell asleep right next to him after a few much needed foot pets by Nick.
As far as not knowing how long Nick has, we are making it our mission to keep him comfortable and cough and panic free. He has been so thankful for all the comments on the blog in response to the accident news as well as to his writing in the past two years. I always wondered how he was going to handle quiting his job and staying home. He found a passion and a purpose that I am sure has touched much more than me. It pains me to write this post, but again Nick having the profound wisdom that he does, said it was only a matter of time anyways. He said he wasn’t thinking he would have made it to Christmas this year. I find it interesting to hear that since as often as we talk about end of life and planning, this never came up.
I will continue to keep our readers posted on Nick and any further news that should come up. Keep the thought of peace in your minds as that is what Nick wishes for the most.
Fri 11 Jul 2008
Posted by Ann
July 11th, 2008 under
General ,
Health[19] Comments
Nick and I share a very odd sense of humor and sometimes it peeks out in front of others. I guess that is how we get along so well. During Nick’s bed bath this morning I used the foaming no-rinse shampoo to do a little hair washing. I guess it actually felt good to have his hair washed as long as I kept clear of the lacerations on the right side of his head. I then took a soft hairbrush since it was feeling good and ended up with a little mohawk. We were having enough fun that I had to take a picture so he could see what I had done. I thought this look showed my Nick . . . the cool cat that he is.
Although each day seems to show many improvements, last night was not our greatest night of sleep. Nick didn’t feel like he relaxed very well and once we fell asleep around 1:30 am he woke up coughing about 4:00 am. This seem to last for an hour or so, but then we slept our best between 5:30 and 8:00 when the doctor stepped in. His spirits, however, remained high this morning. He got up to the recliner with me and physical therapy again and sat fairly comfortably for 1/2 an hour. He says he knows he is feeling better because he is so annoyed by this brace. This is true along with not being able to be in one position for much longer than 15 minutes. His shoulders remain very sore and other than that, just comfort in bed is his only complaint.
Last evening Nick was feeling content and secure in his ability to handle his secretions that he hung out with his parents for an hour. This gave me a chance to return to the house for the first time since before the accident. My mum was curtious enough to drive me as I wasn’t sure I wanted to do that just yet. I spent some much needed time with the Ylvi girl and brought back a couple of puppy kisses for Nick. It felt weird being home and I pretty much just paced around while mum asked me questions about laundry, the compost and contents in the fridge that she was all taking care of. Although I needed to get home, it certainly felt great to get back to Nick’s side.
We are overwhelmed by all of the positive support we are receiving. From the e-mails, to the cards in the mail, to the flowers, to the balloons, and to a VCR that was brought back from the last century, we are humbled by your acts of love and kindness. Thank you.
Wed 9 Jul 2008
Posted by Ann
July 9th, 2008 under
General ,
Health[20] Comments
As many of you may know our 4th of July weekend was a little more eventful than we would have asked for. Nick and I were involved in a car accident around 5pm on Friday the fourth and have been dealing with the consequences ever since. I can imagine that people have been missing Nick’s writing and I do wish that he was telling this story, however he hasn’t been out of bed a whole lot since the accident.
Nick suffered a fracture of the C7 vertebrae and quite a few lacerations on the right side of his face from the passenger window shattering. I am certainly sore and my skin is many pretty colors, but no major injuries. We both were very fortunate in being saved by our seat belts and airbags. Nick was wearing a chin rest while we traveled and along with being in his wheelchair we think the combo made the result much less horrible. We both continue to go through many emotions; a lot of them having to do with anger and sadness that this happened at all, but just being together only reminds us how grateful we are to have walked/rolled away.
We were at Nick’s 10 year high school reunion on Friday and although we wished we could have stayed the full day, Nick was getting a little tired and we planned on heading home. Just entering into Iowa from South Dakota we passed through a little town called Akron and continued to head east on Hwy 3. On one of the intersecting county roads a suburban heading north failed to stop, or even slow for that matter, at their stop sign. They entered the intersection at the time that we were heading through it and we hit them going around 55 mph. Not remembering anything else really about the accident other than where we landed, I continue to replay the episode in my head, missing pieces and all. The man driving the other vehicle had some alcohol on board, however it will be at least 40 days before the blood work comes back in order to charge him with anything in relation to the accident. We are still finding out details in regards to insurance and if or what his injuries were.
Nick and I were taken by ambulance to Mercy Hospital in Sioux City and he remained an inpatient there until Monday around 3pm. We then transfered him to the hospital in Storm Lake where he has gradually made improvements each day. He is in a cervical/thoracic collar that has been the biggest pain in our sides, but is most likely his best option to regaining his previous, or close to, health status. Surgery can sometimes be a fix for these types of fractures, but isn’t always the first option when a more non-invasive one can work. This is especially true when the fracture is displaced which we don’t believe Nick’s is. I am hoping that this means he will have an easier time healing. Having ALS certainly complicates things, but besides surgery a halo set-up is the only other option. He will most likely be in this collar for 6-8 weeks, but perhaps up to 12. Time will tell.
We are grateful to be closer to home and I really have to admit the familiarity of this hospital has made things a little less stressful. I have yet to get to the house, but mine and Nick’s mom have certainly brought the important supplies to keep us clothed, fed and entertained at the hospital. I am certainly missing that pup of ours and if Nick’s days continue to improve I can perhaps step out for a couple of hours. He is talking more and more for short periods of time, but there are still very few to understand him fully. I think it will come. The doctor did understand yesterday morning when he stopped in and exclaimed to Nick about the accident. Nick’s response was “I needed a challenge”. Thats my guy!
Today’s biggest accomplishments were seeing him smile and make a few jokes, getting up to the recliner for 10 minutes with the assistance of me and two physical therapists and finding out that Robitussin of all things keeps his secretions from getting the best of him. He is currently sleeping peacefully beside me and we are hoping for a good night sleep with few interruptions. We are BOTH in need of that more than anything.
We aren’t sure what the next couple of weeks will hold. I am sure plenty of therapy, tv and repositioning, but I hope to keep you up to date now that I am online again. Thank you to all those that have kept us in their thoughts and prayers. Stay tuned.
Wed 2 Jul 2008
Posted by Nick
July 2nd, 2008 under
General[10] Comments
When he woke up this morning, life was different from what it was yesterday for my father. After 37 years of working for Vigortone Ag Products, he has joined the ranks of the retired. Yesterday was his last official day on the job.
The day passed with little fanfare. My mom, siblings, and I thought that we should have a party. Some of his colleagues and friends repeatedly asked my mom when it was going to be. She had to reply, “there won’t be one”. Dad didn’t want one. That didn’t really shock me. That’s not his style. Although there are lots of us who do, he likely doesn’t believe that there are people who want to pay tribute to his career. He also doesn’t like being the center of attention. He would prefer a nice quiet dinner with family. And that’s exactly what he and mom did last night.
Still, I feel the desire to honor this man’s career. I want to give him something to mark the occasion. But I am on disability. I can’t buy him a gold watch or a vacation to the Caribbean. Just about all I can do is type. One of the lessons he taught me was to use what you have been blessed with. So I am going to take this opportunity to tell you about my dad.
Working as an area manager for Vigortone wasn’t the only job for my dad. He and my mom also raised livestock and grain. I think that’s what ultimately made him a good salesman. He understood the challenges and concerns facing the farmers he was working with. their problems were his problems. His solutions could be their solutions.
When I was growing up, sometimes I would ride along to his clients. I never really learned anything about calculating feed rations, but I learned a lot about how to interact with people. Stereotypes will tell you that farmers are all alike. My dad understands that their personalities can be as diverse as any other segment of the population. The truly beautiful thing was his ability to recognize that and interact with them accordingly.
Some of his clients were obviously always in a hurry and didn’t want to spend much time with a salesman that drove in the yard. But most of them were ready to chat. I think that’s because they learned that dad is a good listener. He’s not going to dominate a conversation and always lent a sympathetic ear. He would talk for an hour with a guy who just had a field hailed out and needed to vent. He might spend another hour at the next farm eating pie and taking about the futures market. He might spend five minutes at each place talking actual Vigortone business, but I came to understand that he was cultivating relationships. relationships that lasted.
The ability to maintain those relationships made dad good at his job. It’s also why he got to keep his job. As Vigortone was bought and sold by different parent companies and family farms began disappearing, the company made cutbacks. Dad was spared but his territory expanded. When I was growing up, he rarely traveled more than an hour from home. Now he had to go three hours to get to some of his clients. After having given up tobacco years ago, he turned to sunflower seeds to help keep him company on those lonely South Dakota highways.
When he got home after a day on the road, it wasn’t time to relax. There was always a barn to be cleaned or some other chore on the farm. After supper, it was time for bookwork and phone calls. Those could last until the ten o’clock news. The next morning he might take a load of pigs to market before going off again to Vigortone, a word that was a noun, verb, and adjective in our house.
He did all of this without complaint. Sure, he grumbled about filing reports or learning a new computer program. But he never complained about having to work hard. Never complained that he missed out on going to college because his brother got in an accident. Never complained that he had to have another job in addition to farming. Had it not been for the equally hard work of my mom, he wouldn’t have been able to pull it off. Thirty-seven years ago, they were raising four children and needed more money. That extra money ultimately helped to put five of us through college.
Vigortone is without a loyal, hard-working, honest employee today. But I still have my role model. He taught me how to treat people. He taught me how to live as a Christian man in my daily work. He taught me the importance of giving maximum effort. He did it not with words, but with actions.
Congratulations dad. I am proud of you. I love you.
Tue 1 Jul 2008
Posted by Nick
July 1st, 2008 under
Health ,
Political[4] Comments
It has been 248 days since the ALS Registry Act passed the US House of Representatives by a 411-3 margin. However, unlike the unicameral Nebraska legislature, Congress has two bodies that must approve a bill before the president can sign it into law. Republican Senator Tom Coburn of Oklahoma has done everything that he can to prevent the legislation from passing. About 200 days ago, he placed a hold on the bill, which prevented its quick passage. Time is running out on this congressional session, but there might be something in the works that will save this legislation which is critically important to people affected by ALS.
Last week, Senate majority leader Harry Reid announced that he is working on a “Coburn Omnibus” bill that would group together some of the roughly 100 bills that Coburn placed a hold on into one big bill. He hinted that the omnibus bill would be ready by the end of the month.
According to politico.com “But in a stroke of legislative creativity that may have no precedent, Reid could lump all of the bills into one package and bring up the Coburn Omnibus for a single vote. Coburn can still object, but the broad popularity of the bills means that there would likely be more than enough support for veto-proof passage.”
When Coburn originally placed his holds, he did so to stop the bills from being voted on without debate or amendments. On the surface, that might sound like a noble act. After all, bills shouldn’t be passed without being thoroughly vetted. But as a matter of logistics, there simply isn’t enough time for every single piece of legislation to be debated in front of the entire Senate.
That’s what committees are for. Contrary to the messages in the media, Democrats and Republicans work together frequently, especially in committees on non-controversial bills. That’s where they discuss and rework bills so that both sides are happy. that way when popular bills are brought to the floor, members are happy to be able to quickly pass them. That’s what happened with the ALS Registry Act, which was recommended by the H.E.L P. committee.
Coburn might not actually oppose the legislation. He’s just trying to make a point about government spending and be a true small government conservative by obstructing good legislation. But he might have bet on the wrong horse this time. Reid is carefully selecting bills that have widespread support for the omnibus. According to his staff, some Republicans have already asked about having some of their bills included.
Reid, one of the original co-sponsors of the ALS Registry Act, has not announced which bills will be considered. But with over 70 co-sponsors, I hope that the ALS Registry Act would be included.
The establishment of a national registry will help identify the incidence and prevalence of ALS in the United States and collect data which is urgently needed for ALS research, disease management and the development of standards of care. A national ALS registry also will promote a better understanding of the disease, help to determine causes of ALS and significantly enhance the nation’s efforts to find a treatment and cure for ALS.
I contacted the ALS Association to see if they had heard anything. Unfortunately, I have not heard back.
Sure, it would be nice if the ALS Registry Act was passed on its own. But time is running out. This might be the last best chance to get this vital piece of legislation passed. And getting the Act, supported by both parties is all that matters to me and the 30,000 other Americans who are watching our bodies slowly waste away.
Tell Senator Reid to include the ALS Registry Act in the Coburn Omnibus
Tell your own Senators to pass the ALS Registry Act
Sat 28 Jun 2008
Posted by Nick
June 28th, 2008 under
Sports rants[6] Comments
For the number of hours I have spent watching sports in my life, I am not particularly skilled at being able to predict future outcomes. I have a hard time forecasting when the next touchdown will be thrown or where the next ball will be hit. To the casual observer, this probably sounds normal. You don’t get your own show in Vegas for not being psychic. However, many of my sports enthusiast friends can predict, at least with more than random accuracy, what is about to transpire in a given game. My mom even called a homerun in tonight’s Twins game. This drives me nuts!
I think it drives me nuts because I don’t have that gift and I don’t know why. These guys aren’t bigger sports fans than I. We watch the same things and yet I fail to pick up on the subtleties that allow them to make an educated guess on what is going to unfold. I think that I am so programmed to record what happens that I have permanently deactivated the part of my brain that can analyze a situation and select the next logical event. It’s a good thing that happened after I took the ACT.
But one time, one glorious time, I went out on a limb during a game and accurately predicted an outcome. The best part about it was that it took place in a very public setting and one of my best friends was there to witness it, so it really happened.
We were sitting in left field at Coors Field watching the Cubs and Rockies. The Cubs were down the whole game and the sea of Cubs fans around us was pretty somber. Late in the game, the Cubs made a bit of a rally to pull within a few runs. Before it got too close, the Rockies decided to slam the door and brought in their closer at the time, Shawn Chacon.
At that moment, I believe the spirit of Harry Caray entered my body. Out of nowhere, I leapt to my feet and yelled “Chacon! They’re bringing in Chacon! Hey everyone, we are going to win this game. They’re bringing in Chacon!”
A public outburst like that is roughly the exact opposite of my normal behavior. And I was stone sober at the time.
As Chacon took his warm up pitches, I could tell the fans around us were eyeing me suspiciously. I think that they were trying to decide if I knew something they didn’t or if they should flag down a security guard. When your team is trailing, seeing the opposing club’s closer take the mound is hardly an occasion to cheer.
Since I am sharing the story, you know what happened next. Chacon uncorked a couple of wild pitches, gave up some hits, coughed up a few runs, and blew the save. The Cubs won the game and the people in my section looked at me like I was a prophet. I am left with a great memory, all because Chacon choked.
Chacon performed a different form of choking on Wednesday. He was suspended indefinitely by the Houston Astros for insubordination after reportedly grabbing general manager Ed Wade by the neck and throwing him to the ground.
Chacon, upset after getting demoted to the bullpen over the weekend, told the Houston Chronicle this problem began when Wade saw him in the dining room before the game against Texas. Wade wanted to meet with Chacon in manager Cecil Cooper’s office, the pitcher said. The two exchanged several heated words before Chacon ultimately ended up on top of Wade on the floor.
Chacon was initially suspended indefinitely. The chain of command in a professional sports organization can be difficult to define, but Wade was roughly Chacon’s boss’s boss. What would happen to you if you threw your boss’s boss to the ground? Chances are you would be updating the old resume.
Will Chacon have to do the same? He wasn’t exactly having a horrible year. Chacon, who was released by Houston, is 2-3 with a 5.04 ERA in 15 starts. The right-hander set a major league record with nine straight no-decisions to start the season. He has starting and relief experience. Since pitching is always in great demand around the trading deadline, I am going to put my fortune telling hat back on and predict that he will be active in the majors by August 1. That way someone else can shriek with glee, “They’re bringing in Chacon!”
Wed 25 Jun 2008
Posted by Nick
June 25th, 2008 under
General[3] Comments
I want to share with you an email I got from my brother-in-law Mike. The statistical nerd in me loves this stuff.
A while back you had a post regarding golf balls that you retrieved
from your yard and the types of balls you recovered. I thought I’d
share with you some statistics of balls from Fox Hollow that we
collect. Here is a summary of total balls:
Titleist 1,793
Nike 721
Top Flight 692
Callaway 672
Pinnacle 553
Maxfli 341
Precept 281
Ultra 205
Misc. 219
Dunlop 92
Wilson 64
Of all the balls collected, 1774 have logos, so 31% of the balls have
some logo. This figure is skewed by a couple hundred or so from people
who have given me logo balls. I am having a logo ball display case
being made for a wall. It will be 40 sq. feet. But I need to get 2100
balls to fill it, so need to get about 300 more logo balls before the
snow flies.
Now, this is only representative of Fox Hollow Golf Course in Lakewood,
CO (and a few balls from other courses) but I would think fairly
representative of the golf world