Remembering Curt Ziemke: May 2011

The Greatest Teacher

Dear Friends & Family,

I gripped the steering wheel, took a deep breath, placed the car in reverse and listened to Curt’s gentle instructions. “Use your mirrors, a little to the left, straighten it out, you’re doing well.” It was one of our early trips together at the Lake House, I think we were about 17. He said it was time I learned to back up a trailer. So he hooked a trailer to the hitch of my Ford Crown Victoria, and had me back down the curvy driveway of my parent’s lake house, over and over, until I felt comfortable. I can still remember his calm, gentle voice and how patient he was teaching me. Because of what he taught me that day, I have been able to back the boat into countless lakes and the motorcycle trailer wherever needed.

The motorhome was 40 feet long and the trailer was 28, we were on a dirt road in Dove Springs in the Mojave Desert and Curt moved out of the driver’s seat and told Clarissa it was time for her to learn to drive the motorhome. She was 16. I agreed that she should eventually learn to drive the motorhome, but with a trailer? On a dirt road? I just kept my mouth shut and trusted Curt (as I always do in situations like this). Calmly and gently he explained step by step how she should proceed. He taught her to look ahead and check her mirrors often. He explained why she should look ahead for oncoming cars and how and where she could pull to the side of the skinny dirt road if a car needed to pass. He reassured her that she was doing great. Although she remained calm she wiped her sweaty palms on her jeans often.

Curt, Clarissa, Cayden, Corbin & I were on our motorcycles at the bottom of one of the biggest hills in Jawbone Canyon named So Cal, watching motorcyclists climb the mountain, some with success, and some without. Without a word, Curt took off for the hill. We all watched as he climbed one of the most treacherous hills in the desert. I am a pretty easy going person and trust Curt completely. I believe in his abilities and rarely doubt him. But something about this hill always makes my stomach fill with butterflies. The hill is so steep that many riders don’t make it to the top; they are then stuck and have to figure out how to turn their bikes towards the bottom and get down the hill safely. We have seen many people tumble and slide all the way to the bottom. I would usually hold my breath while Curt was climbing the hill and let out a sigh of relief (to myself) when he made it. The few times he didn’t make it, he expertly guided his bike around and back down the hill. The kids loved to watch their Dad climb that hill. Not many people would even attempt it, but Curt always did, and would usually even wheelie up a portion of it. His confidence and grace on a dirt bike has always impressed me and the kids.

He began taking the kids on small hills appropriate to their age (well maybe not quite) and soon they each became expert hill climbers. “Dad, can I climb that one?” Cayden would ask, “Which gear?” Curt would instruct him with which gear to use and teach him how to read the trails in order to choose the best route up the hills. Each of the kids learned to love climbing hills in the desert on their motorcycles and would always want to camp close to the hills. This year, Cayden tried to climb So Cal Hill. He made it up part of the way and fell and broke a brake lever. He had to figure out how to get his bike turned around and get down the hill with no front brake. He did it expertly just like his Dad would have.

From a very young age Corbin would beg to sit on Curt’s lap and help drive the boat. Curt would let him steer and taught him to look for other boats and to stay on the right side of the lake buoys. Soon, Corbin was too big to sit on Curt’s lap and by then he knew the ropes. He and each of the kids have become great boat drivers. Back in 2009, when Curt was diagnosed, he and Corbin would sneak off from time to time with “trouble” written on their faces. I knew they were up to something, but neither would tell me where they were going. I later found out that Curt was taking Corbin to the Los Alamitos Race Track, not to bet on horses, but to teach him how to drive his big white Chevy truck in the large parking lot. Corbin was barely 10 at the time. I guess I am glad I didn’t know what they were up to. It is because of Curt’s great teaching that Corbin can now drive the Cherry Bomb (mini-van). This weekend and Easter break he drove from the Lake House along the 6 mile curvy road to the main gate with little instruction.

Last Sunday, Cayden and Curt spent the day working around the house. With instruction from Curt, Cayden installed safety grab bars by our outdoor shower, changed light fixtures in the garage, replaced a shower nozzle and much more. That night in bed, Curt commented on what a great day he had with Cayden. He said it was fun to see Cayden “get” how things work. I love that Curt is such a great teacher and gives the kids the confidence to try things and to believe in themselves.

With all that said, it breaks my heart that Curt is losing his ability to talk. It is because of him struggling to speak that I could not write an update last week. I think this has been the hardest part of the disease to accept. When he gets tired, it affects his speech. I try with all my might to listen attentively but sometimes I cannot understand him and I have to ask him to repeat himself. He is the greatest teacher and has so much to teach us all. I cannot imagine life without his encouraging words. He has the most amazing voice; it is filled with kindness and love. More than anything, I pray his voice remains as long as possible. I hope that you will pray for his voice also. Thank you for all your love, encouragement and prayers.

We spent Memorial Day Weekend at The Lake House at Lake Nacimiento. Below are pictures of our fun weekend.

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

The Group!
Bottom - Jacob, Uncle Bill, Krystal, Cayden, Lorraine
Middle - Corbin, Emily, Clarissa, Jim (Dad), Celia (Mom)
Top - Mike, Jim, Curt, Me, Corey

Setting up the zip line (looking down from the house)

Jacob - Zipping Along!

The Zip Line drew quite a crowd of onlookers to our quiet little cove.

The guys lifted Curt into the boat and we were able to enjoy the lake for awhile!

The kids spent most of their time in the boat.

Mike, Bill & Jim were able to get Curt into the back of the Kubota and secure him for a ride through the country.

Corbin enjoyed his drive with the guys.

The guys went to the top of the mountain to get a good view of the lake.

Corey and Corbin grilled hot dogs for the group for lunch.

We are so thankful for the sweet friends of Clarissa and Cayden!

A Rough Patch

Dear Friends & Family,

Things are tough right now; for Curt physically and for me emotionally. It is so hard to watch him struggle. Please pray for our family.

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Zest or Caress?

Dear Friends & Family,

When it comes to soap, Curt prefers Zest and I prefer Caress. So we buy both and kind of trade off between the two. This morning it was time to grab a new bar and as I opened the cabinet and looked at the two stacks, my mind began racing as I decided which one to choose. Normally, I would grab one or the other and not really think about it, but today, I knew it had to be Zest. Curt loves his showers and I want him to enjoy them completely right down to the soap. I wondered how many more showers he will get to take? Will we use the last three bars in the cabinet? Would I use the Zest without him, just to remember his smell? Amazing that all these thoughts took place in a matter of a few seconds. It's just another example of how all the little things are so big to us during this journey.

Saturday we were visited by a Home Health Nurse who informed us that Curt is now on Hospice. It was a shock to both of us, the word Hospice, and the way she talked about dying so matter of fact. We talk about dying between ourselves, but to hear it come from someone else made it sound so much scarier. Anyways, Curt is now receiving VIP treatment with home nurse visits once a week, home doctor visits once a month or as needed, a social worker, a chaplain, bath nurses, prescriptions, and more. Monday they delivered oxygen to help Curt feel better, and today a lift to get him into bed. We are impressed by the people who have been coming and going and their care and efficiency.

Curt's mom, Barbara, has been coming over most days and taking care of Curt. She cooks for him, feeds him and helps with getting him ready for the day. She is super nurturing and patient which is great for Curt right now. I am so glad that he is receiving the best care possible during the day. Thank you Barbara!

Curt remains upbeat and positive although he gets tired and frustrated while performing simple tasks like getting in and out of the restroom. We are doing all we can to make things easier and more accessible. Whether it is modifying clothes, adding safety rails where needed or insisting on him letting us help him more, we try to ease the burden when possible. The kids are still amazing. Clarissa feeds him often, Cayden lifts him into bed at night, and Corbin helps him change and get ready for bed. They are so sweet and loving and would do anything to make his life easier.

Although Curt tires easily these days, he still enjoys a full social calendar. Below are some photos of our week. Once again, thank you for praying and supporting our family. We love you all and couldn't do this easily without your prayers and encouragement.

Love,
Cindy, Curt, Clarissa, Cayden & Corbin

Demetra, Martha, Leanne & I have been meeting for breakfast each month at Mimi's Cafe since our girls were all in middle school together. It seems like yesterday we were talking about them going into high school. Now they are each graduating and off to college.
I cherish my friendship with each of you!

Curt, Corbin & I went to El Dorado Park Nature Center
for a 2 mile walk around the lake on Friday after school.

These turtles were fun to watch!

Curt was challenged by the uneven and sometimes soft dirt trails.

We have enjoyed getting to know Russell and Kristina. Russell was diagnosed with ALS in October of 2008, about one year before Curt. It was great to have them over for dinner. Curt and Russell can relate to each other and what is happening to their bodies, while Kristina & I talk about being the wives and caregivers of ALS husbands. Their 5 year old son stayed home this time.

Clarissa's Senior Prom with her friend Conner

Emily with Curt & Clarissa

Corbin was invited to Lauryn's family birthday party!
Happy 11th Birthday Lauryn!

Cupcake Wars!
Sunday, Rae Lynn's home made red velvet cupcakes went up against Lynn's which were purchased from Sprinkles. It was a fun afternoon of visiting, tasting and voting!

Rae Lynn & Lynn
And the winner is.......Rae Lynn!

Cupcakes & Beer....yum!

Rae Lynn is not the only talented one in the family. Bill's hobby is Bonzai trees. They are absolutely amazing. Curt & I enjoyed learning about and admiring all his trees. He is a true artist!

The Grapevine

Dear Friends & Family,

If you live and travel much in California, you have probably driven on The Grapevine. It is a mountainous stretch on Highway 5 which is a major route between Southern and Northern California. Curt & I have traveled the steep grade of The Grapevine too many times to count. The grade is about 22 miles long and has many areas to pull off for water or brake checks depending on if you are traveling up the grade (south) or down the grade (north). Many years ago, we were traveling south (up) in our first motorhome on a particularly hot day. On a normal day you would find a vehicle or two pulled to the side of the road because of overheating. On this day we were astonished to see vehicle after vehicle lining the side of the highway. Mile after mile the overheated, broken down cars sat, as their passengers stood in the unbearable heat. We didn’t have much concern for the stranded motorists as we motored along in our air conditioned motorhome, perfectly comfortable. We were about 1/3 of the way up the grade when our temperature gauge began rising. Curt turned off the air conditioning to relieve the strain on the engine. When that didn’t work we had to pull over. We sat along the highway and waited for the engine to cool, suffering in the extreme heat. It was then and there that we learned compassion for the stranded motorists. Now every time we travel The Grapevine we share thoughts of compassion and say a little prayer for the stranded motorists.

May is National ALS awareness month. We have been reading the stories of others who are also battling this terrible disease. We personally know what they are going through. As we read their stories we share thoughts of compassion and pray for them and their families. Here is a link to their stories on the MDA page; they are featuring a new person each day in May. Curt was featured on May 6th. MDA - Anyone's Life Story

Thank you for continuing to pray. Curt is at a rough spot physically right now. He can no longer get in and out of bed without major assistance. Last night Cayden had to literally pick Curt up and put him into bed. We are waiting for a home health visit to tell us what equipment we need to assist him. Curt also struggles to step in and out of the shower and some days his legs just won’t do it. We are trying to figure that one out too. Please pray that we can get through this without Curt getting too frustrated. It is more than any man should have to endure.

Watching him struggle is really hard for me. Trying to remain encouraging and supportive when all I want to do is cry takes a lot of work sometimes. Yesterday was a really tough morning. We struggled to get him up and ready for an hour and a half. His legs were not cooperating and there is only so much I can do to help him move. After finally getting him ready, he went to the kitchen to greet his mom and brother who were cooking breakfast and taking care of him for the day. Tired and defeated, I readied myself for work in our quiet bathroom. It was then that I had a “God moment.” You know those….when you feel like God is talking directly to you. I was sad and discouraged and the following song came on the iPod, randomly. I haven’t heard this song in a long time. It told me that I am not alone. The fact that they wrote a song about what I am going through means that many others have been or are going through this situation also. I was instantly encouraged and ready for the day! Please listen:

Cayden ended his volleyball season and Corbin his football season this past weekend. We enjoyed breakfast with the gang on Friday and then a group of us headed off to get pedicures! It was a little sad as Curt is no longer able to get into the regular pedicure chair. He really enjoyed that massage chair in the past. Luckily he was able to get his feet in the tub from the wheelchair and enjoy the pedi. Saturday, I celebrated with Colleen and a ton of her friends; the end of her breast cancer treatments. No more cancer! YAY! Thank you for all your prayers for The Beedy Family. Then it was off to the Coyle’s “Siete de Mayo” party. It was great to see all our friends and the spread of Mexican food was incredible. We also learned that Ray has a talent for neck/back massages. I am hiring him for Curt’s next pedicure; he can be the massage chair! Sunday, we celebrated Mother’s Day at Paradise Restaurant. Curt & I have the most amazing Moms; we are each so blessed by them! Back at home we cleaned the garage as a family. I love to have help cleaning, and this was my chance. The garage looks great, thanks family!

We thank you all for your kindness; meals, visits, haircuts, flowers, cards and prayers. You all mean so much to us and help to make this journey easier.

Love,

Cindy, Curt, Clarissa, Cayden & Corbin

Happy Mother's Day!

Mother's Day at Paradise Restaurant

I love a clean garage! Thanks family!

Sex & ALS

Dear Friends & Family,

OMG! Really? Cindy is going to write about sex? Yes, really. This topic came to mind a few weeks ago when Curt & I were discussing the blog. At that time, I had written a post and wasn’t sure if I should share it. “Is this too personal?”, I asked Curt. He read the post and said “Go for it!” He told me that he wants to help people to learn from our experience. Whether it is friends, strangers or other people battling ALS, he hopes they will learn from our blog. As a happily married couple, once diagnosed with ALS, one of our early questions was “How would ALS affect our sex life?” Well, here it goes.

Physical Facts: Not long after he was diagnosed, I googled ALS & sex. I found very little information on the subject other than the following two statements. 1. ALS does not affect the ability to have an erection or orgasm. 2. You must have a partner who is supportive and patient. I wasn’t sure what that meant until now. It means that because Curt can barely move his body, all the work is up to me. Not a big deal. We are happy to know that he can be sexually satisfied until the very end.

Emotional Facts: This is the hard part, for me at least. Deep down inside, my subconscious is telling me to pull away and emotionally disconnect from Curt. Curt is dying, and my mind is trying to protect me from pain and preparing me to be alone. It is a constant struggle for me to fight my mind and stay connected. We have discussed this and are not sure what to do other than try to ignore the feelings and choose to stay connected. Now, more than ever, Curt needs love, physical love and touch.

I read that people battling ALS need touch more than ever. It stated they are returning to almost an infancy stage as they have to be fed, bathed and cared for. They need to be held and cuddled. At the same time this need arises they are in a wheelchair which becomes a big barrier between people. It is hard to give someone a good hug while they are sitting in a wheelchair. Curt & I try to use every moment that he may be standing (brushing his teeth, showering, or being dressed) to pause for a nice long real hug. We can no longer walk side by side and hold hands or drive side by side holding hands. We have to find other ways and times to hold hands. Curt says he feels connected when I shower him or comb his hair. That is why I continued to take care of these needs even though we had a caregiver. I love him more than words can express and I am so sad for what he is enduring. The least I can do is put aside my subconscious thoughts and keep him physically and emotionally satisfied as best as I can.

Spending time with Curt and as a family is what life is all about these days. We had a great Easter weekend plus a few more days at Lake Nacimiento. The weather was gorgeous and we were blessed to be with family and friends. Clarissa & Cayden got to take the boat out on the lake wakeboarding with their friends and no adults in the boat for the first time. They did great (Curt taught them well) and because they were so responsible, it looks like they will get to do it again next time! Weeks before we left home for this trip, the kids mapped out a place for a zip line over the lake and ordered the needed supplies. When we got there Cayden and his friends spent hours setting it up and then everyone joined in for the fun. WOW! Super Fun!

The remainder of Easter break was filled with Cayden’s volleyball game, chores around the house and watching the kids come and go with friends. Cayden had a pool party on Sunday to celebrate the last day of school break. This warm weather has been amazing. Curt is loving the sunshine! I was excited to meet my new friend Kristina for coffee, whose husband Russell is also battling ALS. It is amazing how we “get” each other. It is reassuring to know that the feelings we are experiencing are alike and therefore we feel more normal. I was excited to see her again along with Russell and Mitchell (5), on Saturday as they returned from Easter break visiting family in Tennessee and Pennsylvania. Russell is struggling, like Curt, with the devastating affects of ALS. Please keep them in your prayers also.

Curt’s mom, Barbara, resigned from American City Pest & Termite last week in order to spend more time with Curt and to help take care of him.

I have really learned through all of this that I cannot predict our/Curt’s needs. It is best to be aware of what’s to come, and then just wait until a need arises and somehow it all works out. We really needed a caregiver in January and we had a great one until April. When she left, I just kind of waited to analyze our needs, and then Barbara became available for Curt. I used to be such a big planner, super organized and ahead of schedule on everything; but with his symptoms, you can only plan so much. Mostly we are forced to wait and see what happens. God has blessed us time and time again and I have learned to be patient and trust that our needs will be met. Your prayers for us are being answered in that we can still face each day with Faith, Hope and Love. Thank you for praying.

May is National ALS Awareness Month. And guess what? Curt was selected to be featured nationally on the MDA website! Too Cool! Read his story, he will be featured on Friday, May 6th. Click the link and then Curt's photo next to May 6th. MDA Presents - ALS: Anyone's Life Story There will be a new person featured each day in May, we are interested to read how others are handling this horrible disease.

Love,

Curt, Cindy, Clarissa, Cayden & Corbin