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

Prayers & Support

Dear Friends & Family,

I didn't post last night because I didn't have anything positive to say. We are all really struggling right now. Curt's ability to walk has decreased so much in the last two weeks that he is in the wheelchair just about full time. This happened so fast we haven't had time to adjust. Our activities are getting more and more limited. When Curt does try to take a few steps he is very unstable and is falling more often. The kids have been great to help him when needed but they are all very sad. I am barely sleeping due to insomia for the last month so my ability to make the best of everything is not present. I am tired, defeated and heartbroken. I am sad for Curt and sad for the kids. I want to protect them emotionally, but there is nothing I can do. I feel defeated by this disease. Curt is, as always, taking it as it comes and trying to keep his spirits up for us. We are still laughing and carrying on with life, but the sadness is more present more often.

All I can say for now is please pray for our family and thanks for supporting us.

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

The Ziemke Family
2002
one of my favorite photos!

Life Goes On

Dear Friends & Family,

As much as I would like to check out of life and spend these days holding hands with Curt watching the sun set into the ocean….life must go on. There are bills to pay, laundry to fold and ortho appointments to get the kids to. Since I cannot check out of life, I have to continue on with the normal day to day tasks, including work. Lucky for me, I have the best job and co-workers in the world!

My parents started American City Pest & Termite in 1979, running the business out of their home. My Mom manned the phones while my Dad serviced a monthly pest route of 300 customers. Now, 30 years later, we have 44 employees and over 4,000 regular monthly customers along with a full service termite department (sounds like a commercial here, but hey, why not? You can check out us out at http://www.americancitypest.com/ ). In 2005, when our long time manager moved on and my Dad was considering selling the company, in order for Curt & I not to have to work for anybody else, I convinced my Dad I could run the company. I was promoted to President and worked hard to learn the business and prove I could carry on. My stress level soared trying to balance a busy company and a busy family. As my hours at work increased Curt jumped in and took over more of the family duties. Eventually things got easier and the workload became manageable. Today; thanks to great managers and great employees, I am able to come and go more freely. I work 4 days a week, sometimes 3, depending on Curt’s needs and appointments.

The best thing about our office is; everyone there knows and loves Curt (after 25 years working there he went on permanent disability in February 2010). They are as sad as I am to see him battling this disease. I cry, they cry. It is good to have my parents and Curt’s mom working there also, we can all cry together, away from Curt & the kids.

Andi, our General Manager, has worked with us for 15 years. She knows everything I know and more. She runs the company when I am not there (and even when I am) and has taken over a lot of my duties. She is a great manager and a great friend. Our Manager Greg, our secretaries, and the rest of our employees are the best co-workers I could ask for. They understand and feel the pain; we are all in this together. A lot of my workday is spent dealing with Curt’s needs and everyone understands that.

I thank God everyday for this company, the employees and my parents who have trusted me with it.

As many of you noticed, I did not post an update last week. I had way too much on my schedule; unpacking from our weekend at the lake, repacking for the next week in Oregon, trying to get the van ready for Curt, and ramps built (thanks Bob) for the house. On top of all that, I lost internet service for two days and spent many hours on the phone with people on the other side of the earth trying to help me fix it. Lastly, I have been fighting insomnia for the past few weeks. This all caused a bit of a mental breakdown Wednesday. After spending most of the day in my office, with the door closed, crying uncontrollably, I decided I could only do what I could do. I pulled myself together and focused on one task at a time instead of my mile long list. It all worked out and we left Friday for Oregon. We are enjoying our time here with my parents, most of my cousins, and friends that come and go. We will head for home on Saturday.

Curt is happy being in the outdoors. The weather is great and he can go all over in his power wheelchair. We are busy entertaining and he enjoys socializing with everyone. The other night as we were settling down for bed, Corbin came to me, in front of Curt, and said “So, how much longer for Dad?” I thought I knew what he was talking about but was surprised that he was so matter of fact about it, especially with Curt sitting there. So I asked him what he meant. He said “You know, how much longer for Dad?” I answered, “Hopefully a long time.” He agreed and jumped into bed. That was that. Curt and I just kinda smiled at each other and kissed him goodnight. Curt said he was glad that Corbin could talk about it so openly. I fell asleep wondering how much longer…..

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

All the Cousins having fun in Oregon:
 Dominic Pace, Ethan Pace, Abby Shepard, Corbin, Amy Shepard, Clarissa, Ashley Shepard
(missing Cayden & Colin)

Clarissa, Cayden, Grandpa Jim, Corbin, Grandma Celia