Dear Friends & Family,
Wow, I didn't realize until yesterday, when I was compiling all the Updates into one file, that I had written 41 of them. It seems like only yesterday (it was actually November 2009) that I had to break the sad news about Curt to everyone. Since then our Update email list has grown to over 160 addresses and I have heard that many people forward them to their friends and family as well. We appreciate everyone that is praying and are honored that you take time from your busy lives to think of Curt & our family. Many of you have told me that you print & save each of the updates. Some of you are new to the update list. Therefore, I have attached a PDF of all the updates. It is 41 pages long. It is arranged by date from oldest to newest. I have also attached "Curt & Cindy's Story, Chapters 1-3." Some people said they had to search through old emails to see where the story had left off in order to piece it with the new chapter. Anyways, it is all attached, do with it what you may.
As far as an update this week, I am sad to say, that Curt's walking is progressively getting worse. I know I have been saying that for months, but we are at the point where he only walks as much as he has to. He stays in the car while picking up Corbin from school, runs very few errands where lots of walking is involved, and parks as close to destinations as he can. He is really struggling and it is really obvious. Watching him struggle makes us all sad. We try to help, but there is only so much we can do. The kids have been so sweet and thoughtful, jumping in to offer help often.
We are looking forward to spending Memorial Day Weekend at Lake Nacimiento. We have a group of friends going, as well as my parents, and friends of the kids. Hopefully the change in scenery will give me a break from our overwhelming schedules and household chores.
I have spent countless hours getting Curt set up on Social Security and Medicare this past week. Hopefully after I drop all the documents off tomorrow, that will be done and he will be accepted. This should help with any medical bills outside our regular coverage. Tomorrow afternoon, Curt has an appointment to get fitted for a walker. Please pray for him, it will be a big step for him to begin using a walker. He is such a manly-man, and walkers are not very manly. We will see how this transition works out. So far he has handled everything with such dignity. He amazes me each day!
Speaking of amazing.....Cayden wrote a letter to Uncle Bill, Curt's brother, who lives in Lake Forest about 30 minutes from here. Bill is a super-great guy and this letter Cayden wrote will give you some examples. I asked both of them if I could share it in today's update and lucky for us all, they both agreed.....
Dear Bill Ziemke, May 24, 2010
First of all I'm not a formal writer but I will try my best!
Thank you, for being the amazing uncle that you are. I have grown up watching you and you have never let me down. You lead by example, you walk the right path. I am so lucky to have grown up with an uncle I can watch and want to be like. You are a perfect example of what a man should be, you are a gentle man, you are extremely caring and always want to put others before you. As I have grown I have seen that in you and I've always been impressed on how much you will do for others with no personal gain to your self. I think watching you has helped me grow into the young man that I am.
I am so lucky to have role models in my life like you and my dad. You two are the definition of men. The way you care for others, I have watched you guys over the years and you have always put others first. You are not selfish, whether it is letting someone go before you through the door or driving all over town helping move houses. You always do the right thing. I see the way you love my dad, and my family, and your mom, and Sharon and the way you love me and its crazy how much you do. You care so much about us and it is obvious how much you do, I know you would do anything for anyone of us.
I wanted to thank you for always being there for me and trying to teach me the right way. All the things you tell me I do listen to because I know you are a good man and you are trying to teach me the right way. Things you have told me in the past years I remember and I try to apply them to my life. You are a Strong Christian man and I know I can always look for you for advice or help. I also wanted to thank you for the way you treat my dad. I can see how much you love him and care for him. It amazes me the things you will do for him. I know this time is hard for everyone but thank you for being strong and for helping my dad. He loves you so much and you are a great older brother. I hope that one day I can be the same brother to Corbin. Your example in my life has shown me how to be a good brother. I hope that I can be a good influence on my brother like the influence that you and my dad are on me.
When I grow up if I'm just half the man that you and my dad are I will be so lucky. I hope that I can grow to be just like you guys. Thank you again for all that you do for us, thank you for taking care of my dad. I try my best to take as good care of him as I can. I love you so much Uncle Bill.
Love, Cayden Ziemke
We are blessed to have Uncle Bill in our lives. Thank you Bill for all you do for us. Thank you to everyone for your continued thoughts and prayers.
Cindy, Curt, Clarissa (17), Cayden (15) & Corbin (10)
Dear Friends & Family,
As I was driving off to college in Texas, girls were lining up at Curt's door, ready to go out with the guy who had been off the market for the last two years. It was August of 1984 and we had agreed to date others while I was away. Curt has never told me too much about what went on while I was gone, but I know for sure that he was busy with friends both male and female. Although I was having a great time at Jacksonville Baptist College, a small two year college with 200 students in a town of 12,000 people, I missed my parents and Curt. I was privileged to be able to fly home once a month for weekend visits. Curt & I always spent those weekends together catching up on what we missed.
When I came home for the summer we spent time at Lake Nacimiento and the beach, like we had never been apart. When it was time to go back to Texas in August, Curt drove me. We felt very mature being able to drive that far, stay in hotels and make our own travel plans. We visited Carlsbad Caverns in New Mexico and other small attractions along the way. Looking back now I am amazed at the trust my parents put in us. When we got to Jacksonville, Curt helped me move my belongings into my dorm room and then we spent time visiting with Texas friends. I had babysat the previous school year for the Banks Family who lived in town. Michael and Rose Mary Banks had three children; Michele, Melissa & John. I was anxious for Curt to meet the family that was so special to me. I was happy when everyone boned and we began creating memories which continues today. I had fun showing Curt the sights of Jacksonville; the lake, the old cemetery, the rival college and the Rose Gardens located 30 miles away in Tyler. Jacksonville was located in a dry county (no alcohol sold), but it wasn't far to the county line where Curt enjoyed purchasing beer since the drinking age was 18. I was not allowed to drink alcohol on or off campus, so I watched him enjoy a few beers, far away from the college. After purchasing his first pair of cowboy boots, we said our goodbyes at the airport and he flew home.
I graduated from college in May of 1986 with my Associate of Science Degree and returned to California. A part of me wanted to continue my education in Texas and become a teacher there. I absolutely loved Texas and the people there. I knew if I made that decision, my relationship with Curt would be over, and I would miss my parents tremendously. After much thought, I decided to continue my education in California. Curt had been working for my parents at American City Pest Control since high school graduation and was really enjoying his job.
In August of 1986, Curt & I had been out with friends celebrating a birthday at Black Angus in Torrance. Driving home in his 1981 black Chevy Step-side truck, with music blaring and us laughing, Curt suddenly blurted out; "Would you marry me?" I said "yes!" The next morning Curt called and asked me if I remembered what he had asked me last night. I said "yes?" He came over to my house and we went across the street to the park to talk. We sat at Entradero Park on the bench swing and talked about our future. Before college, we were not sure that we were meant for each other. After dating others while we were apart, we knew that we had something special. We planned our future on that bench swing and decided we wanted to spend the rest of our lives together.
At the time of our engagement we had been together for four years. Curt knew since the beginning of our relationship that I wanted to save myself for marriage and he never once, in four years, pressured me to go against my desire. He was an honorable man back then and still is today. We set the date for our wedding for June 4, 1988.....
....to be continued
We hope you are enjoying reading Our Story. It has been fun re-living and sharing memories from the past.
An update on Curt. He says (and I can see) each day is getting harder physically. Walking is really tough, he drags a leg and people really notice now that he is having trouble. Strangers are beginning to see him struggle and are holding doors open for him. He cannot walk very far and has to sit down often. He knows he will not be walking much longer. I am checking in to Medicare and equipment for the house. He has a hard time getting out of bed, so we need something to help with that. Also shower rails and such. We will also be needing some type of wheelchair or electric scooter soon. This is very hard to accept for both of us, but we have no choice. As I am researching I just try to keep it in my mind as a task in order not to get too emotional.
Corbin & I had a great time in Sacramento and San Francisco last week for his 4th grade field trip. There is a moment fro the trip I want to share; to show you where his mind is. We ended the Alcatraz Tour and were walking down the hill towards the boat. He asked me something about our weekend plans at home. I asked him if he was ready to get home and he said no. I asked if he missed Sissy (Clarissa) and Bubby (Cayden). He said he missed Sissy but not Bubby. I said "Why not Bubby? He has been so nice to you lately, helping you with projects and teaching you things in the garage?" Corbin answered, "Mom, he is only being nice because Daddy is dying and Cayden wants to help keep our family happy for the next year or two until Daddy dies." He looked up at me and began crying, we stepped off the trail and hugged and cried for about 30 seconds until suddenly Corbin looked up at me and said "OK, that's enough, let's go." He dried his tears and my tears and we continued on our way. I said "That wasn't much time for crying, I didn't even get all my tears out." He said, "We can't just cry all the time."
Clarissa enjoyed Prom this past weekend. She looked beautiful and I wondered as I do on many special occasions, if Curt will get to see her next year. Cayden was busy filming a project for school and Clarissa's last volleyball tournament on Sunday.
Our great friends, Colleen & Jim Beedy, had bracelets made that say "Praying For Curt". They are Curt's favorite color - blue. If you would like one, ask me next time you see me, I have them in my car. If you are out of town, send me an email and I will send you one or how ever many you need. Thank you Beedy Family, what a thoughtful gift!
As I say often, thank you for praying! Thank you for being there for us. Thank you for the kind notes, meals, and phone calls.
We love you all!
Cindy, Curt, Clarissa, Cayden & Corbin
Dear Friends & Family,
That first kiss on a warm summer night on August 4, 1982, was the beginning of a relationship that continues today. We spent that summer hanging out like teenagers do. Curt was working at the Union 76 Gas Station around the corner from my house. I made a lot of trips to get gas in those day. It was back when the employees stood out by the gas pumps. He would take your credit card and after running it through the manual imprinter, he would hand you this mini clipboard with the card placed in a slot so you could sign the receipt. I was so impressed with his customer service skills and how everyone knew him by name. Even though I went to self serve he would always pump my gas and wash my windows (and he still does today!). He worked in the evenings so that left our days free for the beach.
Hermosa Beach, 2nd Street, was where all the kids from West High hung out. Curt would go with his group of friends and I would go with my group, we would all meet there and stay until the late afternoon. At lunchtime we would all walk to Mickey's Liquor. The guys would get big deli sandwiches; Curt's favorites were meatball or salami & cheese. I would get a bag of Funyuns and an Orange Crush. When we were not at the beach or work (I worked at F & H Nuts and Candies in The Old Town Mall, and then later at Baskin Robbins on Torrance Blvd.), we would hang out at my house. Curt was not allowed inside when my parents weren't home, so most of the summer was spent on our front porch. Curt always came over drinking a Big Gulp from 7-11. Sometimes we would go to the park across the street from my parents house and swing on the swings or sit in the shade under the trees.
Many weekends throughout the summer, my parents let me invite friends to their vacation home at Lake Nacimiento. We would go as a group, the girls would sleep in the house and the guys would sleep in a huge room above the garage. My mom would wake us up early and we would all go water skiing while the lake was calm. She would drive the jet boat and she taught everyone to ski. She then taught Curt to drive the boat so he could pull her skiing. My dad was happy to let Curt do the driving, as he had chores to do around the property. I don't remember shopping, planning or buying food for these weekend trips, I guess my mom did it all. Wow, thanks mom & dad, you guys were so awesome to have us all there!
Our Junior & Senior years were full of all the typical high school activities. We attended all the football games, dances, proms and parties. We went to lunch together everyday, usually with a group of friends. We enjoyed Perry's Pizza at Del Amo Mall, Taco Bell in Redondo Beach, Del Taco on Del Amo or Steve's Char-broiler. One time we were having lunch at Del Taco and Curt was fiddling with a packet of hot sauce. Back then the hot sauce was in little trays with a cover you would pull back so you could dip into it. Anyways, as he was fiddling the packet suddenly split open and squirted all over my white sweater. I mean all over it. There was no time to go home and change, so I grabbed Curt's jacket and ran for class. I remember sitting in short-hand, sweating and smelling like hot sauce. I was so embarrassed and nervous that someone would notice, it seemed that the clock was barely moving. I made it through and to this day whenever Curt is fiddling with a packet of hot sauce or ketchup, I gently remove it from his hand. The memory comes back and we both smile!
Much of our high school years were spent surrounded by friends. It seemed we never did anything alone. We would cruise the beach, enjoy the Spring Car Races at Ascot or go to parties. Always with a group of friends. George, Steve-O, Ray, Jim, Darrin and Michelle, along with many others are still special friends to this day. We have many memories that we all cherish from those days.
Curt & I graduated West High School together in 1984. I decided to attend college in Texas. Leaving my parents, my friends, my home, and most of all, my Curt was very emotional. Curt gave me a teddy bear and a ring the night before I left. We hugged and cried and were nervous about the future. We decided to break up in order to date other people. The morning I left for Texas, he stood in my driveway, waving until I could no longer see him.......
....to be continued
Cindy, Curt, Clarissa, Cayden & Corbin
Dear Friends & Family,
A few years ago my kids persuaded me to ride the Xcelerator Roller Coaster at Knott's Berry Farm. The roller coaster accelerates from 0-82 miles per hour in 2.3 seconds. I boarded the roller coaster and tried to mentally prepare for the ride, but there was no time. It took off so fast that my stomach was still back at the station as we were soaring straight up the first hill. I had no idea what was ahead; I only knew that we were climbing extremely high, 205 feet to be exact, more than 20 stories. I could only guess that it was going to be a really big drop. My stomach had finally caught up to me on the hill climb only to be left at the top of the hill as we plunged 205 feet straight down the 90 degree drop. The twists and turns that came next left me dizzy and disoriented. I wanted to get off the ride, but that was not an option; I was strapped in and committed, it was too late for the chicken exit. I tried closing my eyes, but that did not make it any easier. In the end I decided all I could do was hold on tight, be thankful my loved ones were next to me and try to enjoy the rest of the ride.
Lately most of my days have me feeling like I am strapped on a roller coaster, my stomach somewhere else and feeling dizzy and sick to my stomach. I have cried many tears and begged to get off this ride. I close my eyes but the pain gets worse. If I think about the past, I am not living for today. If I think about today, I am sad for Curt. There is no future to think about. Seeing Curt struggle is indescribable. Seeing his strength and upbeat attitude slowly diminish makes me sad. He used to wake up energized and ready to start the day. He used to hold doors open for strangers. He used to greet everyone with a cheerful hello. Now it is all he can do to just get up in the morning, get himself through a door and to speak what is necessary.
Thankfully we are still able to get out and be with friends and have friends over. When we are with people, the pain lessens, I can breathe and best of all I can laugh. I see Curt having a good time, laughing and forgetting his struggles for awhile. Seeing him happy makes me happy. Without friends the pain would be so much worse. Thanks to all of you who come and hang out at "party central" on a moments notice. You have no idea how much it helps us to be with friends!
Many people have asked if we are seeing results from the Mexico treatment. At this point we have not. It has been one month since the treatment, the doctor said it would take two months which will be May 29th. We talked to the doctor two weeks ago and we have an appointment to call him again this Friday. He asked a lot of questions about Curt's symptoms and encouraged him to keep fighting what ALS is doing to his body. He encouraged him to work his muscles by lifting weights. Curt has been working out and eating good. We are still hoping and praying for results.
Many of you contacted me about an episode of 60 Minutes which aired a couple of weeks ago. They did a special report on ALS patients and the "doctors" who are scamming them with Stem Cell Treatments. The doctor they filmed undercover practiced in La Jolla, CA and then escorted patients to Monterrey, Mexico for treatment. There are many scams like this out there which I am very aware of. These types of doctors have websites that make all kinds of promises. They have "sales people" that call relentlessly. Even when I ask them to not call anymore they continue to call (luckily they only have my work phone number). They promise to cure. They charge $30,000 - $150,000 for a single treatment which is usually performed in the Caribbean or Mexico. They have no data or proof of results.
We trust that Dr. Ramirez (the doctor who treated Curt in Mexico) is not a scammer for the following reasons. He was recommended by Margie's uncle who was treated and saw great results. Dr. Ramirez is a Neurologist who works at the hospital by day and has his own practice in the evening. He does not have a website. He does not have sales people. His wife is his receptionist. He is a very humble and caring man. He never promised a cure or even healing. He hopes this treatment will stop the progression. He made no guarantees. He travels the world speaking about Neurology.
We are glad we had the opportunity to be treated by Dr. Ramirez. We felt that we had to do something proactive for Curt. We are praying everyday that this works. If it doesn't, I would do it all over again. Right after Curt received the IV, his happy and fun loving self come back to life. It was awesome to see the old Curt; to watch him joke around, to see him take off and climb a ton of stairs to the top of a memorial. He was truly happy; like a weight had been lifted off his shoulders. He had finally received hope. Hope for a future. He has not received a bit of hope since he was diagnosed in November 2009. Although his "high" only lasted a few days, it was worth every penny we spent to see him that way again! Depending on what happens in the next month we may go back to Mexico in June for another treatment. If we do, I hope he gets that same feeling of happiness and hope even if only for awhile.
Currently, we are all doing our best with what we are facing. We all try to keep busy. It helps to have regular schedules and lots of activities on the calendar. Clarissa and Cayden are just about done with their volleyball seasons and Corbin is finishing up Flag Football. We are planning a trip to Lake Nacimiento for Memorial Day Weekend and we are all excited to go boating and soak up the sun! Cayden was not able to wake-board last year as he was recovering from knee surgery, so he is very excited to wake-board again. Clarissa is busy getting ready for prom next weekend and thinking about how she will spend her summer. Corbin & I are going to Sacramento and San Francisco next week on a school trip for three days. Curt has been fighting a cold this last week so he hasn't gotten out too much. He has a list of friends and family wanting to get together as soon as he feels better. His attitude is positive even when he is feeling bad. He has not let being sick keep him from any of the kid's games or activities. He is an incredible man and I am the luckiest girl in the world to have him as my husband!
Please continue to pray with us for healing and comfort.
Cindy, Curt, Clarissa, Cayden & Corbin