Different

Dear Friends & Family,

I attended college in a small town in East Texas. Although I had spent many summers traveling across the United States with my grandparents, I had never spent more than a couple of weeks outside of Southern California at a time. East Texas was a big awakening for me. The traditions were strong and steadfast there. I learned that you don’t wear white between Labor Day and Memorial Day, Sundays were completely about church, to the extent that almost all stores and restaurants were closed in order that all employees could attend church.

Not long after I arrived at Jacksonville Baptist College, I met a guy who was born and raised in that small East Texas town of Jacksonville. For the sake of this story; we will call him “Bud”. Bud was Texan to the core. He was tall and dark with big hands and long legs. His accent was so heavy I could barely understand what he was saying when I first met him. Bud was a few years older than me; he didn’t attend my college, just a guy from town, a friend of a friend. He used to hang out in the dirt parking lot behind my dorm in his big truck. A bunch of us girls would all pile in the cab of his truck and just sit there and talk. He said he liked my accent, which made me crazy, “Californians don’t have accents, Texans do.” I never saw Bud dressed in anything other than jeans and cowboy boots. It didn’t matter if it was super hot and humid or freezing cold, Sunday church or a workday. He became a great friend to me and we spent a lot of time together as friends.

When he got off work he would pick me up from school and we would drive out to the country to check his hog traps. Hog traps, dirt roads that go on forever in the middle of nowhere, and having to do this daily was a whole new world to me. It was fun to hear his stories as we would travel from trap to trap. Sometimes he would take me fishing. I had never seen a person launch a boat, tie it to a tree, park the truck and trailer and get back in the boat. I had always seen my parents and their friends do it as a team. When I offered to help Bud, he always laughed, shook his head and went on with his routine. Fishing along the shore was also new to me. I was used to big open lakes with no trees. This lake was surrounded by trees; every time I would cast towards shore, my line would get caught in a tree. He would shake his head, put his pole down and untangle my line. When I was with Bud, I felt like a foreigner in a strange land. I just kept trying to get things right. Everything was so different in East Texas and with Bud.

Once again, I feel like a foreigner in a strange land. Having Curt in a wheelchair is different. When we go places like concerts, high school football games, friends’ homes or weekend get-a-ways we have to plan ahead. Stairs, parking, accessible bathrooms and temperature (if he gets cold his muscles stiffen) are all things we have to figure out. This is a different journey for both of us. We were so used to spur of the moment, just “wing it” and go trips. I am thankful that we are still able to do so much. Our days are full and that keeps life fun and makes all the work worthwhile. We are figuring out this new way of life as needs arise. I was not excited about having to install safety grab handles in our newly built master bathroom; but Curt was able to find bronze handles that blend in perfectly. Thank you Jim for installing them and making everything look so nice.

It was different having to buy a wheelchair accessible van. Although Curt was not excited about having to drive a van, he is happy with the freedom it gives him to take his power chair and once again shop at Home Depot and all those manly-man stores.

It is different to walk beside Curt as he is in the power wheelchair. I miss being eye level with him. Sometimes I get in the other power chair that was loaned to us and we cruise down the street or around the block, holding hands at eye level. It is different.

The other day I saw a man on TV running down the beach; I tried to remember what Curt looked like running. Already my mind has forgotten. It has only been a year since he was able to run, I can’t believe I forgot what he looked like. Is that a gift? Pretty soon, all that we are going through will be normal, not different. I will cast my line and it will not get tangled, I will master what this disease is doing to our lives and all that is different.

We spent last weekend in Palm Springs with 10 of our awesome friends in a gorgeous home lying by a fabulous pool in the warm sun. We all felt truly spoiled in such a beautiful place. Curt was able to get all around the home and yard and cracked us up with his amazing wheelchair stunts. Thanks everyone for making the meals to fit into Curt’s diet and for helping load and unload our car and everything else you did to help us! Curt is leaving Thursday for a “guys only” fishing trip in the Sierra Mountains. I know he will have a great time with all the guys!

We are all doing well right now. This new team we have of a doctor, nutritionist, pharmacist, physical therapist, and the “mad scientist”, is giving us hope. They are all working together to stop the progression of the disease and hopefully begin some healing. We are all feeling hopeful and excited!

Thank you for all your prayers. God is good!

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

Curt flew from California to Texas to escort me to my Formal Banquet at Jacksonville Baptist College in April of 1986.

Please Join Us!

Dear Friends & Family,

Helping others is something our family loves to do. On Saturday, October 9, we will be able to help others with ALS by raising funds to support the ALS Association. We have formed Team CZ and will be raising money and walking as a team to help in the fight against ALS.

Please gather your families and friends and join us at El Dorado Park in Long Beach for a 2 mile walk. Bring lunch for your family and join us for a picnic after the walk. It will be fun to see everyone there, supporting Curt!

In order to join our team and walk or simply make a donation click on the ALS Website.

We had a great Labor Day Weekend. Friday, we celebrated Corbin's his actual birthday with family at Fuddruckers. Saturday, we joined lots of friends of the Popp Family in their new home in Acton for a housewarming pool party. My cousin Alyson, her husband Jeanno, and kids Dominic & Ethan came from the Sacramento area and stayed with us Sunday & Monday. It was great to hang out with them by the pool, grill steaks and catch up with each other.

As of today, all the kids are back in school. Corbin is now a 5th grader. We are looking forward to a great school year. Clarissa and Cayden have been in school a week now as a senior and a sophomore, they are happy with their classes and teachers. I have to say that we are very impressed with the teachers and counselor at Los Alamitos High School. They have been so compassionate doing all they can for our family. We could not ask for more caring and genuine people, especially Clarissa & Cayden's counselor, Mrs. Olshan. Thank you so much for supporting our family.

Curt is doing well on his new supplements and diet. He is eating foods that are good for his body. He has more energy, is speaking well and sleeping well. He has learned new exercises from Andrea Henderson, who is a physical therapist and has volunteered her time to come weekly and teach Curt. Thank you Andrea! With daily workouts these exercises will help Curt maintain the muscle and coordination he has and hopefully he can get stronger in time.

Thank you all for continuing to pray for health and healing.

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Clarissa & her Los Al friends stopped by Fuddruckers on their way to the football game
to wish Corbin a Happy 11th Birthday!

The Concert

Dear Friends & Family,

If you know me, you know I am a fan of Kenny Chesney’s music. I love his strong and pure voice along with lyrics that are sometimes fun and sometimes touching. If you have been with me when a Kenny song comes on, you know that I ask for silence in order to listen and appreciate whatever song is on. Well, about 5 years ago Kenny Chesney was performing at The Home Depot Center in Carson. As much as I wanted to attend the concert, I couldn’t part with such a big chunk of money. I came up with an alternate plan instead, Curt thought I was crazy, but was willing to go along with the plan. On the night of the concert we loaded up the kids in the truck and headed for The Home Depot Center. My heart was racing; I could hear his voice as we drove into the open air stadium parking lot. A nice security guard gave us permission to park along a curb right next to the stadium. The kids got so excited, thinking we were going in to see the concert. It took awhile to convince them we were just going to sit in the truck and not go in. We finally got them settled down and calm enough to just sit and listen. There we sat, the five of us, windows rolled down, a warm summer breeze blowing, listening to the music of Kenny. I was extremely happy to be so close and to hear Kenny’s live voice.

A few years later, we were reminiscing about this experience with Bill & Carolyn Melanson. We were surprised to discover that they were actually at that concert, inside, with real seats. They shared with us how much they enjoyed the concert, the excitement of the crowd, the big screens on either side of the stage, the lighting, the energy of the performers. All the stuff that we missed. It made me doubt that our experience was so great. Maybe we missed out? Maybe it would have been better to be in the stadium feeling the energy?

These days I wonder…. am I going through life right now sitting on the outside? Am I truly capturing all the memories I can? Am I feeling all I can? Am I missing anything? Do I need to be on the inside with the excitement of the crowds, the big screens, the lights, and the energy? Part of me says it was great on the outside; in fact, it suited us perfectly. We heard the music, felt the warm breeze and were together as a family. What more could I ask for?

Happy #11 Birthday Corbin!

This past weekend we celebrated Corbin’s 11th Birthday! Friday afternoon he had a birthday party with lots of friends, swimming in the pool and going wild on a 40 foot wet obstacle course. The party continued into the evening with our friends and their families joining in the fun. Carolyn, Lisa & I conquered the slippery obstacle course while laughing non-stop. We grilled chicken and everyone brought food to share. Curt & I truly let loose (me, more than him) and were able to relax and enjoy the party as it continued into the wee hours. Thank you Paul, Lisa and Carolyn for your help all day, and everyone else for helping with whatever was needed, it was a great party!

Curt is still doing well on the new program. Yesterday he noticed his speech was not so clear and realized he forgot to take his supplements on time. The improvement in his speech is still definitely noticeable. We know the supplements are working in his body and look forward to more results in time.

Clarissa & Cayden begin school tomorrow as a senior and a sophomore. Corbin is enjoying his last days of summer. Thanks for supporting our family through thoughts and prayers.

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

Cayden & friends hanging out in the garage

Clarissa & Emily
Ready for "Jersey Jam" High School Dance

 Having fun with our great friends!

Learning to Practice Patience

Dear Friends & Family,

In early 1991 we became pregnant for the first time. Curt & I were so excited. We had been looking forward to beginning a family since we were married in 1988. Our excitement could not be contained, and although we had been warned by people to wait until we were further along to announce the pregnancy; we didn’t listen. We wanted to shout it from the rooftops “We’re having a baby!” Seriously; it was all we could do to make it more than a few minutes without speaking of our excitement of having a baby. Well, sadly we had a miscarriage. It was a tough ordeal, even more so when we discovered I was carrying twins and lost them both. Although I was only 7 weeks along we had told sooo many people about our pregnancy. One of the hardest things for us was figuring how we were going to tell the sad news to the zillions of friends and family that we were no longer expecting. Our great friend George Kudo was kind to make many calls for us and spread the news so we would not have to. We received tremendous support from everyone which helped us deal with the loss. It seemed like forever, but in June of 1992, we were blessed with another pregnancy. As much as we wanted to make it to twelve or at least eight weeks before we told people, once again we could not contain our excitement and shared the news with everyone we knew. In March of 1993, Clarissa was born and there was no looking back! What we went through back then made us strong, taught us to reach out to our friends and family, and brought us closer than ever before.

Last Tuesday after receiving hope again, we could not contain our excitement. Seeing Curt’s speech improve right before my eyes was a miracle. We went to bed that night with hope for a future again. Wednesday, Thursday and Friday, we were both (along with the kids) floating on Cloud 9. Curt was energetic, talking clearer and more frequently; it wasn’t such a struggle as before. His legs were steady and he was trying to walk more. We talked about what we will do when he gets better. We can sell the “handi van” and get a fun car, we can plan a tropical vacation, did we sell the Harley too soon?, oh well, we can get a new one. Our dreaming went on and on. Then all our dreams crashed on Saturday when Curt’s improved health declined. He struggled to talk, his voice was not so clear and he was tired and frustrated over simple tasks. His legs were super shaky and when he struggled to take a few steps across the garage he tripped and fell. I suddenly began to think “this new regime is not going to work, it was too good to be true, everybody dies from ALS.” My heart was pounding and my stomach was sick as the pressure of running the house, kids, work, meals, shopping and thinking about the future care for Curt, all came flooding back. I want a partner, I don’t want to do it myself. Curt felt the same, he wants to take care of his family and live a full life. He doesn’t want to have to be cared for. Crazy how from Friday to Saturday we both went from looking at the future with hope to looking at no future. Sunday afternoon Clarissa sensed our moods and took the boys out for awhile. Curt & I floated in the pool and talked about our feelings. Laying there in the sun, we came to this conclusion; this disease has been slowly destroying Curt’s body for over a year, maybe more like two. It is going to take longer than 3 days for him to get better. Simple.

Meanwhile, we have told zillions of people of our new hope for a future. You all, just like us, are expecting immediate results. Please join us in practicing patience. When the news is good we want to shout it from the rooftops, when the news is not so good, we hope no one asks. This blog makes it easy for us to share news, good and bad, with everyone. I will continue to update you weekly on the status of Curt’s health including our new regime with Lutimax, supplements, and a healthy diet. I don’t mind questions about Curt’s health, so ask me anytime (preferably when the kids aren’t around). Curt would rather not talk about specifics of his progression or regression with the disease. General questions about his health and how he is feeling are fine. He welcomes and is thankful for your support.

Today we saw a doctor in Aliso Viejo, recommended by Tom from Lutimax, who will prescribe supplements to help Curt gain back the muscle that he has lost. We had been told by other doctors that once the muscle is gone you will not get it back. Tom shared photos with us of a man with ALS who had lost most of his muscles and was able to gain them back. We are convinced that this will work for Curt too. Today we met with Tom again in San Clemente and went over the protocol and discussed supplements and diet more in depth. Curt will begin light strength training and will work his legs on a recumbent bike (thank you Ed & Julie for the new bike!).

After a tough weekend, we are once again excited and hopeful. This is going to work, we believe it! Just like our miscarriage; our struggle with ALS is making us stronger, teaching us to reach out to friends and family and bringing us closer than ever before. Thank you for being a part of our lives, for caring, for crying and for praying!

Love,
Cindy, Curt, Clarissa (17), Cayden (15), Corbin (10)

Oregon - August 2010

What A Day! Hope is Here Again!

Dear Friends & Family,

Today we met a man who was diagnosed with Lou Gehrig's Disease 10 years ago. His name is Steve and he is 47, walking, talking, and living life to the fullest. He is an energetic dad with a very active life which includes baja racing, kayaking, skiing, and motorcycle riding. Steve has been able to drastically slow and even reverse the effects of ALS. He contributes this to a positive attitude, healthy diet and lots of supplements including Lutimax. Today we met the maker, inventor and patent-er of Lutimax. His name is Tom (we referred to him as the mad scientist). He is a great guy with a big heart. We (Curt, Jeff Henderson & I) sat in his office for four hours listening to stories of the people he has helped with ALS, Autism, Parkinson's, Turrets, Brain Cancer and more. It was obvious to us that this is a very caring man who is more interested in helping heal people than making money.

While we were in the office Tom placed some Lutimax powder under Curt's tongue. He waited 18 minutes (random #) and Tom asked Curt to talk. Curt's speech definitely improved. We were all a little surprised. Tom said Curt's speech should improve quickly, muscle twitching should minimize, tight muscles should loosen up and he should gain strength in his legs. He said to use the walker as much as possible and save the wheelchair for Costco. Anyways, he kept Curt, Jeff and I on the edge of our seats with his stories and encouragement. My heart was dancing! We have a chance at a future!

We left his office with supplements, Lutimax, a healthy eating plan, a work out plan, intention to get a weekly massage and most of all HOPE! What a day!

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The West High Guys (and one from North High- we still love u)

This past weekend we enjoyed dinner at Kobe Steakhouse Friday night with Mark & Kelli. So fun watching the teppan chef juggle eggs and knives.

On Saturday, Jeff & Alicia Henderson opened their gorgeous home in Torrance for a party with all the West High guys and wives. We enjoyed visiting with everyone while eating freshly prepared tacos and drinking margaritas. The kids enjoyed listening to the guys talk about their high school days and trips to the desert motorcycle riding. Thank you Jeff, Alicia, Vanessa and Victoria for such a great party!

Jeff & Alicia Henderson

We spent Sunday at Paul & Lisa Popp's new home in Acton lounging by the pool with some of our favorite families, drinking homemade Sangria. Hanging out together was just what our family needed. The sun was warm, the breeze was nice and the view was great. We love your new home, congratulations!

Thank you all for praying last week. We really appreciate all who reached out with comments on the blog, emails, cards and calls. Thank you all for offering support and helping us (me) through a tough week.

Cayden got his drivers permit this past week. He is very excited and likes to drive everywhere we go including the freeways to Torrance and Acton. He drives great and we are so proud!

 Cayden & Krystal and The Thing

We love our friends and family! Thanks for supporting us through prayer and thoughts.

Love,

Cindy, Curt, Clarissa, Cayden & Corbin