Wine Time

Dear Friends & Family,

We have always been "party" people. It seems there is always a reason to celebrate and/or just gather friends together. Now more than ever, there is reason to gather friends together. Curt loves being with family and friends and enjoys the energy of constant activity. Gatherings just seem to happen around here. Some parties are planned but many are impromptu. For as many photos you see of gatherings at our house there are many more where no photos where taken. People just pop in and suddenly it's party time! We love spontaneous parties where there are no expectations, just friends hanging out.

Curt says that the clock is ticking and we have no time to waste. He cherishes his time with friends and family. This weekend his high school/motorcycle friends planned a party at our house. They brought food and bbq'd a delicious dinner. It was great to hear all the stories from the past. It was also touching to see how much they care for Curt and support him. The night before, we had plans to go to dinner with The Melansons, but as soon as they arrived, some friends stopped by and soon it was a pizza and salad party in the backyard complete with a full moon and warm breeze!

I have said over and over again how great our friends are. As things are getting more difficult for us, everyone is jumping right in to help. Jacki comes to our house every four weeks and cuts Curt's hair and spends the day with him. Friday, a few friends took Curt for a drive down the coast for the day. They had a great day exploring the Coast and getting out together. While they were away, my friend Rhonda treated me to a makeover and lunch. Thanks Rhonda! We got news this weekend that Rosalie, Curt's caregiver, accepted another job. As I fretted about what to do with Curt so I could go to work, our friend Bernie jumped right in and spent the day with Curt on Monday. Knowing that Rosalie is no longer here, many have already offered meals, which we may accept soon. As hard as it is for us to ask for help, our friends have been great to offer, this has made our lives so easy. The pressure of this disease is tough but the support of all those around us makes it easier to cope. Thank you all!

Cindy, Curt, Clarissa, Cayden & Corbin

Thanks Candy for the great seats at the Angel game!

Friday with the Boys

Don, Jeff R, Jeff H, Curt, Ray, Bill, George
In back, Brian, Steve-o, Darren
Great party guys! 

Cayden and his friends meet up Sundays for lunch.

It's Official!
Clarissa will be attending California State University Long Beach!
(She just returned from her workout, when we snapped this photo of her in her new CSULB sweatshirt)

Curt is teaching Corbin the art of how to pick a fragrance.

I love the new perfume they chose for me!

Dinner at the Chart House with Ed & Julie!

Roses are blooming everywhere!
I snapped this photo as I was pulling into the office today.
The yellow roses remind me of my Texas friends.

Our friend Mike Casey is here tonight from Palm Springs.
We enjoyed dinner at Macaroni Grill and then a treat from Baskin Robbins!

The Cost of ALS

Dear Friends & Family,

First off, let me say that I am not asking for money. My purpose for writing this is to show that ALS not only takes a toll on your body and emotions but also on your bank account. We have all been told to set aside money in case of emergencies or hard times, but how are you supposed to know how much? Thankfully, Curt & I have always lived within our means, have never relied on credit cards and have taken loans only for our mortgage and motorhome (and now the handi-van, aka, Cherry Bomb). I feel compelled to write about the high financial cost of battling this disease because it is a big part of ALS. Meanwhile, we are thankful that we have financial freedom to take care of Curt in the best manner possible. Not having to worry about money frees us to enjoy our time together without having to worry about finances. Don’t get me wrong, we are putting out a lot of money and are being very careful to stay within our means, it’s not like we have an abundance, but we are doing fine.

When Curt was first diagnosed, I hit the Internet and collected all the information on treatments I could find. I purchased a few books and nutritional products. We spent a lot of money at the chiropractor about $2,000 over the course of a few months trying herbal supplements and acupuncture. Curt had a hard time swallowing all the pills and we were not seeing the progression slow so we stopped the supplements but kept up with the acupuncture, because it made Curt feel better. Soon we learned of a doctor who healed based mainly on nutrition. We went to him for a few months and no results after $675.00 on office visits. We took a trip to Mexico for a stem cell/DNA treatment. The cost was about $5,000 for treatment, airfare, hotel and expenses. It was well worth it because we went with our good friends Ray & Margie, met her wonderful family, stayed in a posh hotel and had a great vacation/medical trip (oh, and we connected through Dallas, so got to see Mike & Melissa on the way through).

Doctor visits are infrequent so $20.00 co-pays for visits, prescriptions and tests don’t really add up to much. The only prescription for ALS is Rilutek which is $986.00 per month, but thankfully our insurance covers it for a $20.00 co-pay. Curt stopped taking Rilutek after a year. The only benefit to it was a 3 month extension to your life, but doctors don’t know if that is on the front end (healthy side) of the disease or 3 extra months in the end when you can’t talk or walk. Meanwhile, it damages your liver, so what’s the point? We have a 20% co-pay on durable medical equipment which includes Curt’s power wheelchair. We haven’t been billed yet but we are expecting to pay about $4,000-5,000 for it (ouch).

You can’t have a power wheelchair unless you have some way to transport it. We were connected with Joaquin who is a paraplegic and specializes in finding vans to fit the needs of disabled drivers/passengers. You tell him your budget and he will find you a van. From $5,000 to $70,000, depending on the year, type and equipment. I guess this is one area I splurged a bit. Curt was not happy about having to give up his super cool 4WD lifted Chevy truck for a mini-van. He didn’t want to look at vans and didn’t care what I chose. After looking at a few different vans, Joaquin brought over the Cherry Bomb and I knew that was about the nicest looking handi-van we would find. The van was one year old and cost $40,000. Crazy, huh? The van itself was $20,00 and the modifications (ramp, lowered floor, etc) were $20,000 on top of the van. Our payment is $730.00 per month. Joaquin assured us, it will resell better than any other van because it is a Honda Odyssey.

Things really got expensive when we met The Mad Scientist. He sent Curt to be implanted with testosterone $700.00 (including blood work and doctor visit) to help prolong muscle life. Injections of HCG ran $150.00 a month, plus syringes, etc. Natural supplements and weight gainer protein along with Lutimax ran around $500.00 per month. We were willing to pay, because Curt was feeling better, talking better and we had HOPE at that time. The testosterone helped prevent Curt from being so sensitive to cold weather which would impair his mobility and speech. Everything we did with The Mad Scientist was worth the $$ spent. When we realized the progression of ALS was still happening, we weaned off some of the products and now spend about $200.00 a month for muscle gainer protein and Lutimax. By the way, The Mad Scientist never charged for his time. We spent countless hours in his San Clemente office/warehouse talking and experimenting. He is an amazing man with a heart to heal. I pray that someday he can find the path where his knowledge and love can be used to help many people.

During Christmas vacation it became apparent that Curt would not be able to drive much longer. He could not be left home alone because he was falling often and easily when he would transfer from wheelchair to chair or toilet. We knew we needed to hire a caregiver. I was surprised to find out that our insurance (Kaiser), nor medicare, covers this type of service. It must be totally paid out of pocket. Our friend Debbie works for a home health care agency and she fixed us up with Rosalie. We agreed to add her to our auto policy ($100.00 per month) and add workers comp to our homeowners policy ($15.00 per month) in order to hire Rosalie at a reduced rate from the normal price of $23.00 per hour. Anyways, we spend about $2,000.00 per month plus the cost of insurance for about 24 hours a week of home health care. We also rent a Life Station Medical Alert system ($27.00 per month) in case Curt falls or needs help when we are in different areas of the house.

Splurges. Curt & I are pretty conservative spenders, we don’t spend a lot on shopping, vacations or gifts for each other. We have splurged a bit since his diagnosis. I threw a huge birthday bash for him last year, not knowing how many birthdays he would have. It was worth every penny to see all his friends and family together in his honor. As I mentioned in my April 5, 2011 blog, Curt bought me a really nice anniversary gift this year, a beautiful diamond necklace. He splurged on the necklace because he said he won’t be around to buy me many more nice gifts. We appreciate being able to splurge on each other at this time.

Income. When Curt had to quit working in February of 2010, he began receiving state disability, $986.00 a week and Social Security, $1977.00 per month. It was nice for Curt to collect a bit of what he had been paying into for the last 26 years. We were quite surprised in February of this year to learn, without warning, that state disability is only temporary and just like that, boom, $986.00 per week was gone. My parents were great to raise my wages a bit to help make up for what Curt has lost. I can’t imagine how our life would be if I had to work regular hours and not have the flexibility I have to take care of Curt’s needs. Thanks Mom & Dad! It is because of how you taught us to handle money and the steady income you have provided us at American City, that we can be ok financially through all of this.

Well, all this to say, ALS can be expensive. Having a bit of financial freedom in order to take care of Curt in the best manner possible has made our lives much easier. We appreciate all we have and all we can do. We now have a greater understanding for what other people are facing as they fight ALS and hope you do too.

On that note, the MDA has been great in providing us with a spare power wheelchair, a home safety evaluation and more services as needed. We feel for others battling ALS that don't have the resources we have, I know that the MDA helps them tremendously. If you are looking for a charity to donate to please keep them in mind. Their link is on the right side of this page.

Thankfully, we have been busy with friends and distractions from ALS. My cousin Erik came down from Oakland to perform with his jazz band, The Doppler Trio, in downtown Los Angeles. Curt, my parents, and I enjoyed watching them perform Thursday night. Erik ran around with Curt and his sister Beverly on Friday; breakfast, tour of  Signal Hill, Cayden's volleyball game, dinner and Corbin's football game. We walked to Islands for lunch on Saturday, had an impromptu Woodstock happy hour here and then to Torrance Beach for the sunset before he headed for home!

We love our family and friends and welcome your visits, emails, cards and prayers. Thanks for supporting our family. Please pray for Corbin as he is really struggling right now. He is knowingly acting up at school, knowing he is angry about his Dad dying, but not knowing how to handle his emotions.

Cindy, Curt, Clarissa, Cayden & Corbin

Here's what was inside Curt's precious box I shared last week. The most amazing necklace ever! I haven't been able to capture its brilliance in a photo, and now it is at the jeweler. Maybe a better photo next week! Thanks Curt, I love it!

Happy Birthday Jessica!
We love the Coyle Family!

Happy Birthday Carolyn & Lynn!
We celebrated with pedicures and lunch on Friday!

Lynn & Lisa

Carolyn & Rae Lynn

Corbin's Football Fan Club!
Thanks Cousin Erik & Melanson Family for joining us on a cold night to cheer for Corbin!

Yogurtland after the game!

Hanging out with Cousin Erik

Woodstock Road Happy Hour - You never know when its going to happen!
We love our neighbors!

Sunset at Torrance Beach
Our favorite place to be!

Life As We Knew It

Dear Friends & Family,

We walked out of Kaiser on November 11, 2009 with a death sentence for Curt. His diagnosis sent us both into a state of shock (thankfully). The next few days we felt numb and physically pained. Life as we knew it would never be the same. My mom said that we would eventually get used to it and find a sense of normalcy and acceptance and be able to continue on with our lives. We spent the next few days struggling with how and when to tell the kids. When we broke the news to the kids we suddenly realized we needed to tell their teachers and our friends and family so everyone could support one another. I spent the next few days making phone calls bearing the unimaginable news. On December 7, 2009 we visited a different doctor for a second opinion. I think that time hurt more than the first. We walked out of the building and I was surprised by the way the world was still turning. People were hustling about, traffic was congested as usual and although our world would never be the same, no one seemed to notice. It was the strangest feeling, I felt like we were in a bubble and no one could hear or see us. Our family had just been dealt a devastating blow and nothing in the world changed. I am sharing this story tonight because I just finished reading Tuesdays With Morrie; he had the same experience when he walked out of the doctor’s office after being diagnosed with ALS. He was surprised that everyone was just going about their day just as he received the news that his life would be ending soon.

Like my Mom said, we have been able to find some normalcy and go on about our lives. Although the past year and a half has been difficult and full of adjustments, for the most part, we have continued to fill our days with friends & family taking in God’s beauty, the warm sunshine and fabulous opportunities to appreciate all we have. Although I try to remain positive day to day, the tolls that ALS is taking on Curt’s body are sometimes more than I can bear. To see him suffer is torture for me. We used to tell each other when the other was sick, “I wish I could suck it out of you and make you better.” Curt is requiring more and more help as his body deteriorates by the day. ‘In sickness and in health’ has become the forefront of our relationship. I am sad that he has to suffer so much. Our nights are full of trying to get him comfortable in bed, helping him roll over, use the restroom, and getting him in and out of bed. I am tired. Pretending that everything is ok and keeping a sense of normalcy is exhausting, but there is no time to complain. Plumbing leaks (thanks Mark for fixing it), school projects, and sports schedules keep us running.

This past week someone caught on and word spread through our friends that we were struggling. Although we don’t know what we need, they seem to know. Wednesday, Mark picked up Curt and took him out for awhile to visit Mark’s job sites, and then he brought Curt by the office to surprise me. Earlier that day, Mark & Kelli had sent a vase of sunny yellow flowers to the office to cheer me up. The water in the vase had sliced lemons floating in it. Kelli said that we had been given lemons in life and are making lemonade along with teaching everyone else how to. Thursday night we were blessed with an impromptu gathering of friends; the Melansons, Hunters & Coyles came over and cheered us up. It was so sweet of them to come over; they livened up the house and Curt & I went to bed laughing. Saturday night we were once again surrounded by friends at our house for an Italian potluck. These gatherings are just what we need to distract us from the pain and show us that we are not in this alone. Sometimes I forget that I am not the only one losing Curt. Our friends are grieving and struggling along with us also.

Tonight, Curt took me out to dinner for an early anniversary celebration. He had a gift for me and wanted to give it to me while he could still talk. Although I tried to convince him to wait until our actual anniversary, June 4th, he insisted that he wanted to see me enjoy the gift as long as possible. We had a super delicious dinner at Park Ave where the waiter presented a gold, foil wrapped box on a tray. The sweetest thing about the box was his handwriting (to Cindy Lee, Love, Curtis Mitchell) on the outside. He hasn't been able to write for months, so I know this took a lot of effort and love. He is so amazing and loving! I am still the luckiest girl in the world! Please pray for physical strength for Curt.

Continuing our video interview from April 2010,  Steve Gallie has added Part 3 - The Proposal, on the right side bar. Check it out.

Cindy, Curt, Clarissa, Cayden & Corbin

Corbin's Friday Night Lights football game

Rosalie & Curt
I wrote about her last week, but didn't have a photo. She is a great care-giver for Curt!

Thanks Hunter Family!

Curt is teaching Larry how to arrange flowers! Too cute!

Mark, Kelli, Clarissa, Jessica, Debbie, Julie & Daniel
Saturday Night Italian Party!

Jaime, Margie, Carolyn, Lisa and Rae Lynn

Paul, Bill, Ray, Bill, Larry, Jim & Mark
Love the random guy on the tv looking over Paul's shoulder. He really wants to be part of the group!

Jim & Colleen (she's almost done with chemo!)

Sadie's 80's Dance
On their way to Sadie Hawkins Dance

Clarissa's 8th Grade Class Reunion at Lakewood Christian School

Clarissa had fun catching up with old friends.

Krystal & Cayden after his volleyball game today.

An early anniversary gift from Curt. You'll have to wait until next week to see what's inside the box.
 I have to keep you all in suspense. Just know that it is super amazing, just like my husband!