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