Remembering Curt Ziemke: 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.

Love,
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!