2010 Townsend Family Newsletter

MERRY CHRISTMAS!

We sincerely hope this letter finds you well and happy. You have been in our prayers each day as we thank our Heavenly Father for all those that bless our lives in so many ways.

FAMILY

The education theme continued in 2010 with everyone in the family in school or on an internship. Books, homework, deadlines and tests are the popular topics around the dinner table these days. I never thought about it before hand, but it’s amazing how much we all have in common now. “This girl kept talking to me during reading time today”; “I totally didn’t get the lesson today”; “I need your help on my homework tonight”; “My teacher is a total dork”; or “Why do I have to do this assignment?” have all been heard at the dinner table in the last week. See if you can guess who said what. But all is not toil and misery- we did get out for some fun this year, too.

In July, Ellen, Nikki, Abbie and I drove to California to visit my family in the Bay Area. At my sister’s pool party, the perfect day at the beach, the amazing Chaminade Resort, and in my grandmother’s backyard -- we had a wonderful time renewing our relationships with each other. It is a great blessing to be members of the Townsend family.

Sunday dinners are the highlight of the week as everyone comes home. Even our occasional Sunday visitors know they can expect a pot roast banquet and a rowdy game of Mad Gab, Pit, or Scripture chase when they come over for the evening. Sparky continues to be a good old dog, companion, foot warmer, guinea pig guardian, and ball fetcher.

ABBIE

Our youngest, Abbie, had an amazing year of growth in body, mind and talent. We continue to be amazed at Abbie’s creative talents, including learning how to cook at age 9. She started with the important things – cake, cookies, candy, hamburgers, French fries, mashed potatoes and masterful garden salads. She particularly enjoys the table presentation with flowers, cards, fancy napkins and other artwork. Abbie makes us smile with her ingenious questions, such as, “When we get sick, why is it always in our face?” and “I am late to school every day and the lady in the office STILL spells my name wrong! When will she get it right?”

NIKKI

Our Nikki is an official teenager now and decided to allow the Jr. High to enjoy her presence. She has made the transition very smoothly and continues to impress us with good grades and a winning, friendly attitude, punctuated with a beautiful smile (she got that from her Dad). She is preparing to join the High School Marching Band color guard with lessons from the ‘winter guard’. If this isn’t exciting enough, she can use her new dance moves and flag skills as a Ninja.

Through a series of negotiations involving a mop, lemonade, and KSL.com, the girls now have a soft, cuddly guinea pig named Sasha, and Adam no longer has a cold, wet turtle named Flem. While selling the turtle, we found out that she was a male after caring for him for 9 months. I hope the animal recovers from its gender identity crisis as he had painted nails for a number of weeks.

ADAM

Adam started his second year with the award winning American Fork High School Marching Band. They participated in many community parades and perfected their performance in the amazing field show, “Pandemonium”, including a national performance in Indianapolis. His summer was booked with the BSA National Jamboree, tour of the East coast, daily marching rehearsals and a week at Band Camp in horrid Delta, Utah. Never one to get bored, Adam saved for and recently purchased a high definition video camera to feed his love of movie making. Look for his latest productions on YouTube – search ‘adamrtownsend’. He is currently working on a video commercial idea for a dating service; check with him for a public release date.

NATALIE

After a fall semester at UVU, Natalie took a spring internship opportunity at Disney World, working with characters like Chip, Dale, King Louie and Bolt. She returned to her apartment in Utah and toiled in the difficult job market. After part time work at Bath and Body Works and Plato's Closet, she is settling into a receptionist position at Novell and a fun opportunity at Pirate Island, a pizza restaurant where she gets to play dress up and act like a pirate. If you know Natalie, you know she loves this type of "work"! She's currently saving up money so she may travel more and gain new experiences around the world. Natalie continues to be a loyal friend and counselor to her roommates and siblings.

ANDREW

Andrew was serving an LDS mission in Little Rock, AR and returned honorably. He got a job at Myler Disability (interactive law firm) as a screener for new cases. He earned enough money to go to Florida to reconnect with his sister Natalie. Then he saved up for an apartment in Orem, and a trip to Arizona to visit friends. Andrew continued to excel at Myler and is now a paralegal over hundreds of cases in California. He completed his first semester at UVU studying Digital Media with an emphasis in Visual Design (ie. pictures and movies). Andrew also purchased a diamond ring for a young lady named Ashley, and they will be married in the Spring.

ELLEN

Ellen is taking classes at UVU, with an emphasis on non-profit leadership. She loves her classes about social behaviors and business management. When she is not sitting at a desk, or driving kids to and from their corners of the universe, Ellen spends her time as a volunteer to many community events, including the AF Symphony, Cub Scout Day Camp, Webelos Woods, Reflections Art Program, Crescent Jazz Band Festival, Merit Badge Pow Wow, and the Gingerbread House Festival and Gala. She is looking forward to helping with a wedding in March, but not very excited about losing her first little cub to marriage. We try to keep her focused on the fact that she is gaining a wonderful daughter, and will eventually gain little babies to tend!

STEVEN

I spent the year working at Novell, studying business at BYU and doing my best to be a supportive husband and father. I am so proud of each of our children as they pursue their passions and try to follow the Savior's example. I love everything about the Executive MBA program at BYU. I don't know what I'll do with myself after summer graduation. We keep time available each week for home evening, a date night, and the Sabbath. We are fortunate to welcome the ward choir to our music room each Sunday. The kids don't realize it (yet), but they, too, are blessed to have heavenly praises sung in our home as they eat their lunch.

We are always grateful to be blessed with such wonderful friends and family. May your heart be merry and your future bright.

With Love,

Steve, Ellen, Andrew, Natalie, Adam, Nikki, Abbie (Sparky and Sasha) Townsend

Wheelchair Update

Well, I noticed that in my last post, I shared the news that the Insurance company had determined that I didn't need a wheelchair. That meant that they hadn't paid for it, nor paid for any repairs. So I had been taking care of maintenance for about three years. It wasn't so bad really. Just replacing bolts, cleaning bearings, crimping steel here and there, etc. All this while I was trying to figure out why an insurance company would say a wheelchair wasn't medically necessary. So here's what the hang up was.

As I contacted the call center, I would get a different story each time - fax something here, request something there, etc. Eventually, after faxing multiple departments there, I ended up receiving a copy of all communication between IHC and Aetna from their legal department. It actually took two tries and a conference call with one of their lawyers to finally get the letter of denial and the explanation and the denial of appeal. Since the chair was billed as a package, they denied the whole thing because of three things they said were not necessary:

• I did not need an 'ultra-light frame'
• I did not need light wheels (carbon fiber 3 spoke X-cores)
• I did not need solid core/no flat tires

The reason is that Aetna only covers medical equipment that you need to function at home. All of those things would be necessary for going out doors or transferring into a car. That's not covered. They were saying, in affect, 'Stay home Mr. Townsend. You are disabled.' I couldn't believe that lack of logic, and apparent discrimination. I secured my insurance through my employer but the insurance company would not provide the equipment I needed to retain that employment. I figured I had an open and shut case.

So, acting on advice from my colleague in HR, I called our benefits coordinator at headquarters. She said she was going to look into it and to fax just the denial letter to her. Three days later, I got a call of the IHC wheelchair shop, the 'provider' in Insurance speak:

"Hey Steve this is Shane from the Wheelchair Shop."
"Hey Shane. I'm working with the insurance company. I hope to get payment to you soon. Can you give me a couple weeks?"
"Well, um, that's why I'm calling. We got this weird letter from Aetna today. It says, 'After a voluntary self review, we have determined that all wheelchair claims are covered and we have approved the purchase of the recently specified replacement chair.'"
"Holy Toledo! That's awesome! I know exactly how that happened and it had nothing to do with a 'voluntary self review'."

I called Zelia Magliozzi in Novell Benefits and thanked her to the ends of the earth. She simply said that it shouldn't be a problem any more, chuckled a little, and said goodbye.

So long story, shorter, I'm writing this post in a new chair that fits absolutely perfectly. It's got a light titanium frame with the right push-rims. But most of all - IT FITS! The center of gravity is exactly where I need it so I can push hard AND still wheelie when I want to!

I still have the old chair. But the axle completely failed, the brakes are worn out, the bearings on the right caster are shot, the upholstery is ripped and the solid core tires have worn flat. But other than that, it's still a good backup chair. ;-) This is a good thing to have. Because when one of the caster tires completely ripped off once, I was stuck at home for two days. Now I have no excuse. :-)

There you have it. Up to date on all things wheelchair. I'll try to write a little more about the rest of life. Ta Ta for Now.

Another Anniversary?!

Last year, on March 10th, I completely forgot about marking the anniversary of the accident. I chalked it up to acceptance. You know, if there was no pain, no regret - nothing special about the day - I must be in the 'acceptance phase' of the grief cycle. Right? Well, that may be the case, I'm not really sure. But the anniversary of the accident should serve a purpose in my life and the lives of all those affected by the accident and resulting paralysis. At least, that's what I'm feeling this year. ;-)

So with this post, I intend to answer a lot of the questions that people are asking lately. And perhaps I'll tell a couple other stories. We'll see how it goes.

Physically, I've settled into a pretty healthy state. It's common for people with spinal cord injury to have various ailments related to sitting (a lot!), limited exercise, medication and the unique way we have to use the restroom. From this set of common causes of problems, I haven't had a lot of problems at all. But I must say that I do much better in the summer time. Exercise is really the key.

It's hard to get outside and push in the wheelchair in the Utah Winter. Pushing for reasonably long distance means that I keep my heart and lungs healthy. My arms and shoulder are totally ripped :-). And I feel better about life. It also significantly reduces the nagging pain of nerve injury that encircles my chest and the burning feeling in my legs and bottom. A couple of Sundays ago. I decided to push home from church. The sun was shining, although it was a little chilly. So I kept my suit coat on and headed out of the parking lot. Just then, a steady wind kicked up - right into my face. It's about 300 yards up a slight incline that took me 15 minutes! Little girls in in their Sunday shoes were passing my by trying not to make eye contact. :-) My suit coat acted like a parachute more than it kept me warm! LOL But I got home after 20 minutes and I felt pretty good! Can't wait for Spring and Summer.

Some of you that have seen me in the little community races around Utah County are surprised that I do these things in my normal 'everyday chair'. I keep telling myself that I need to get a racing chair. But they are so dang expensive that I keep putting it off for other priorities. The only problem, besides excessive wear and tear, is that my everyday chair is what is called an open frame design. It's basically just a letter L. This keeps the weight down and makes it easier to transfer in and out of the car. But without reinforcing tubes, the frame tends to vibrate at higher speeds - like greater than 5 miles per hour or so. One of the front casters will vibrate a little, transfers the vibration to the frame which transfers it to the other caster, which then resonates back until the whole front end of the chair lights up with vibration. This slows me down - a lot! If I'm headed downhill, I lean forward and grab the frame to dampen the vibration. I can steer a little by pushing the caster housing with my fingers as I'm holding the frame as well. A little dangerous, I know. But I've only crashed once, so... LOL

Just a funny thing about my wheelchair that I thought I would throw in here. I had been receiving bills from IHC periodically saying that Aetna had not yet paid for the wheelchair. Every time I called, the IHC person would tell me that it was just a clerical thing and I didn't need to do anything, until now... I got a call from IHC three weeks ago. The lady was a little sheepish and said,

"Well, Mr. Townsend, um, your insurance company has refused to pay for your wheelchair. We have exhausted all of our appeals. So, um, we need to remind you that payment is your responsibility. So, um, I'm sorry, but we need you to pay us for the wheelchair."

What?! "Yes, I understand that it's my responsibility. But can you tell me why they won't pay?", I asked.

"Well, from the codes they used to decline our appeals, it seems that they don't believe your wheelchair is medically necessary," even more sheepishly.

What?! But this time, I couldn't hold it in. "What?! What part of my wheelchair isn't medically necessary? The wheels? The casters? The cushion? The brakes? I'm sure they know that I'm paralyzed"

"Apparently, the whole thing."

So there you have it folks! After four years, I discover that I don't really need a wheelchair! Hallelujah!

Speaking of discoveries, some of you have asked what has happened with recovery. What can I feel and move? What will happen in the future? And similar things. There could be a long discussion about this. But this entry is already pretty long. So I'll just give the highlights.

• I still have no normal sensation below the injury level. And I don't expect I will ever have any normal sensation return. I can feel when I need to go to bathroom. I can feel tickling feelings on the bottom of my left foot when Ellen tries to tease me. And I feel discomfort when I have been sitting in the same position for too long. I'll just shift in my chair, lift up for a minute, or stretch my legs out.
• I have very limited recovery of movement - called volitional movement. This is the kind of movement that my brain is telling my body to do. I can straighten out my left leg with what looks like very low voltage control. I can push my left foot down and push my left and right toes down a little. The only use I've found for any of this is when lying in bed: I can stretch out a little. That feels good. And when I'm in my chair, I can stretch by left leg a little bit. Everything else is just for parlor tricks. :-)
• Tone and spasticity is still with me in full force. My thighs and feet have muscle tone - meaning they like to stay in whatever position they are currently in. When any of the muscles from my hips down feel a rapid stretch, they reflex by constricting. This sometimes causes spasms. At times, my feet will bounce or my legs will want to lift or straighten, and my IQ will jump by twenty points. (just making sure you were paying attention). On rare occasions spasms and tone get in the way. Bumpy paths are a royal pain. And when I've been sitting without stretching for a while, my body really gets tight, making it hard to transfer and push. See above about exercise. Just think of spasms like having to carry a two year-old around with you all the time. ;-)
  

I take medication to keep the tone and spasms down. But I don't take more because it would make me VERY DIM in the head. Who wants that? So I'll deal with the occasional spasms. There have been some very hopeful advances in preventing the scar tissue that cause most of the spinal cord injury in accidents like mine. But I don't expect that they will be able to help people that already have scar tissue. They are focusing on prevention immediately after the injury. We're all awaiting the outcome of the clinical trials that started last year. It will be more like the polio vaccine. People that had already contracted polio lived to see the disease eradicated. But it did not benefit them personally.

Currently, I am working at Novell in an engineering operations role. I am also attending graduate school at BYU. I'll have my MBA next summer. It's been a GREAT experience so far. My wife Ellen is also attending school at UVU. She hopes to complete her Bachelor's degree in Youth Leadership within two years. We have similar courses at times. So it's been fun to discuss. So my life is fun and busy with school for the whole family!

Although most days are good and 'normal'. I still have days that are challenging. Sometimes, pain will be a problem or I'll get frustrated with something I can't seem to reach :-). And sometimes, very rarely, I feel sorry for myself. But hey! Don't we all?

I still appreciate the offers to help. I appreciate the thoughtful people that hold the door open. I appreciate the people that carry things for me when my lap just won't due. And I always appreciate the people that treat me like a normal person without ignoring the disability. In fact, that's the way I like to think of myself. Except, without feigning humility, I actually think of myself as an extraordinary paralyzed person. But it is not paralysis that makes me extraordinary.

Anybody can be extraordinary if they choose to be.