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Orange County Chapter

Irvine Walk

J.ust H.ave L.ove

Thank you for helping us reach our fund raising goal! Together we can make a difference in the lives of those affected by Lou Gehrig’s Disease. Our team is committed to raising money to support people in our community with ALS and spread awareness of the urgency to find treatment and a cure. Please consider joining our team in the Walk to Defeat ALS® or choose a team member from the list and donate to our cause.

Why We Need Your Help

Often referred to as Lou Gehrig's Disease, amyotrophic lateral sclerosis (ALS) is a progressive, fatal neuromuscular disease that slowly robs the body of its ability to walk, speak, swallow and breathe. The life expectancy of an ALS patient averages 2 to 5 years from the time of diagnosis.

Every 90 minutes a person in this country is diagnosed with ALS and every 90 minutes another person will lose their battle against this disease. ALS occurs throughout the world with no racial, ethnic, or socioeconomic boundaries.

This crippling disease can strike anyone. Presently there is no known cause of the disease yet it still costs loved ones an average of $200,000 a year to provide the care ALS patients need. Help make a difference and donate or join a walk today.

Jonathan Lee's Story

I just want to thank everyone for their continued prayers and support for my father. I truly believe the Lord is listening to our prayers because every time the doctors wanted to force us to pull the plug, my father has shown positive signs on the tests they have run.

I feel compelled to tell you about how my father ended up in the hospital.

Back in March 2009, my father had severe pain in his left wrist. We thought that it was carpal tunnel syndrome, due to the fact that my father spent a lot of time on the computer. When he called the doctor, the doctor confirmed that carpal tunnel syndrome was likely, and he instructed my father to ice his hand and keep it wrapped in order to prevent him from using it. He did so for roughly a month.

When the pain subsided, he tried to use his hand and discovered that two of his fingers (the pointer and middle) were no longer able to bend. We thought it was due to the carpal tunnel, and we decided to wait. After another month, when he was only able to move his thumb, we decided to seek additional help from doctors. After many delays with insurance and getting approval to see a doctor, we were directed to a nerve specialist. The nerve specialist had my father get an MRI, which showed that he had some herniated discs that were pinching his spinal cord. The specialist suggested that my father get surgery for the discs and attributed the lack of finger movement to the spinal condition.

We had trouble getting our insurance to approve the surgery, so my father decided to go to Taiwan, where he still had his Taiwan National Healthcare card. By the time he left for Taiwan in late September, he could no longer use his left hand. I remember taking him to the airport and looking at him walk with a cane for support. At that time, he smiled back and said, “Don’t worry. I’ll see you soon.”

During his checkup in Taiwan, the doctors conducted numerous tests and concluded that surgery was not necessary. They gave him a clinical prognosis of Motor Neuron Disease (MND), or possibly Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gherig’s Disease. They said that because the disease was the main factor contributing to his condition, the surgery would not help.

MND is rather rare in Taiwan, so we decided that my father should return to Los Angeles for treatment. My father returned on Nov. 10. I picked him up at the airport, and he was wheel-chaired out. He was still able to walk a little, but it was tiring for him. He smiled at me with confidence and got into the car. By that time, he said his left leg was getting weaker.

The next six weeks were probably the most difficult weeks my father had to go through. We searched around for neurologists that could treat MND. With the Lord’s favor, a friend introduced us to a neurologist at UCLA, which has one of the nation’s best research facilities on these types of diseases. We went to UCLA on Dec. 3 to get a preliminary check-up. By then, my father was dependent on his walker. The check-up results gave our family a lot of hope. The neurologist said that because my father was diabetic, there was a possibility that he had another type of disease called Multifocal Motor Neuropathy (MMN), which results in ALS-like symptoms due to the diabetes. He said it was rare to find a patient with diabetes and ALS. If it turned out to be MMN, his condition would be somewhat treatable. If it turned out to be ALS, then they would cover all of my father’s medical expenses for research. We arranged for the tests to get done, pending approval from insurance, and we planned a return check-up after the tests on Jan. 14, 2010.

The next few weeks were very hard for many reasons. First, insurance did not approve my father’s tests. We needed to get the tests done before Jan. 14, so that the neurologist could properly diagnose my father’s condition. Our insurance company argued that UCLA never sent the forms, but UCLA said that they did. Because we never got approval from insurance, on Jan. 3, 2010, we decided that we would go to UCLA on Jan. 7 and check-in under “Emergency.” That was our last resort to get the tests completed before our Jan. 14 check-up.

The reason we were so desperate was that between Dec. 3, 2009 and Jan. 3, 2010, my father started deteriorating at a dramatically fast rate. The week after Dec. 3, my father lost all muscle strength in his left leg. He started to become wheelchair-bound. He was hardly able to stand, and he had to be carried or wheeled everywhere. One week after that, he was completely dependent on his wheelchair. The following week, he could not move any of his limbs, except to lightly shake his legs and use his right hand. During this whole time, his voice got softer.

All these things were happening at a rate much faster than the standard rate of those afflicted with MND. These diseases usually progress very slowly for one to two years before there is a complete loss of motor function. My father’s situation was very unique in that he deteriorated in less than seven weeks from the minute we started noticing major deterioration.

We were excited to go in on Jan. 7 to get the tests done because we felt he would be diagnosed with MMN, and his condition would be treatable. We were hoping that, with the news, we would be able to start his treatments and be on the road to recovery.

However, on Jan. 5, 2010 when I returned home from work, I walked into the house and heard my mom scream, “Your father is choking!” He had choked on a small piece of an orange.

I ran in and started to pat his back to see if I could dislodge the orange that was stuck in his throat. When that did not work, I tried the Heimlich maneuver. It was during this time when my father stopped moving. I looked at his face, and it was turning blue. His teeth were clenched, and I had to pry his mouth open before I could feel around his throat to clear out what I could. Then, I tried to induce vomiting; hoping that it would bring out whatever was blocking his throat. When it seemed like his throat was clear, I started to do CPR. At that moment, our neighbor, Rex Smith (the singer/actor), also ran in. He had previously been a lifeguard, so he knew how to do compressions. We performed CPR till the paramedics came.

They spent 15 minutes trying to revive him, and then took him to St. Jude Hospital in Fullerton. At the hospital, my father was resuscitated. He had a cardiac arrest. The total time without a heartbeat was estimated at 35 minutes. However, we believe the total time without oxygen was only 3-5 minutes. The emergency room doctors immediately lowered his temperature to minimize brain activity and to keep his brain from getting more damaged. However, because his blood pressure kept dropping, they could not maintain the hypothermic treatment for the full 24 hours that were recommended. They only conducted the hypothermic treatment for 14 hours, and they started to slowly raise his temperature back. The wait was very heart wrenching because we did not know what to expect when his temperature returned to normal.

My mother, sister, friends, and I stayed at the hospital all night to be with him. In fact, at least one of us has been at my father’s side ever since he has entered the hospital until today. When his temperature returned, we had hoped he would open his eyes. That was not the case. However, we felt it would be too soon to see. His vitals were very unstable during the first week. His blood pressure would rise really high and then drop really low, and he was having a mild fever because of liquids that may have entered his lungs when we gave him CPR.

During the stay at St. Jude, the insurance company kept insisting to transfer my father to another hospital because St. Jude was not compatible with our HMO group. We had to fight every step of the way to keep him there. We could not understand why they would want to move anyone in my father’s condition, as he was still very unstable. The doctors were also not very optimistic with what the outcome would be. They insisted that we consider letting him go in peace by pulling the plug. We refused their advice. We wanted to give my father a chance to fight.

Two days before my father’s accident, he told me and my sister that he felt God was going to shut him down and then wake him up healed. He even told my mom three hours before his accident that she must have a child-like faith, or else God could not do His miracles.

About nine months prior, I had found my faith in God again. There was something that was different in me, and my father wanted to know why. He was a fourth generation Christian and had followed the Lord his whole life, but the things I was explaining to him, he had never felt. I asked him to go deeper and give things to God. So during the past month, he had gone to sleep asking the Lord questions, and when he woke up, he had Bible verses in his head that were his answers. He would share them with me and say that they must have been from God. He was very happy, and I was overjoyed.

So for his faith, we wanted to fight with him. With every test that the doctors at St. Jude did, my father always overcame. From EEGs to CBFs and MRIs, the test results always came back hopeful. At St. Jude, he was breathing over the ventilator on his own at times, sometimes two to three breaths over. We felt good and hopeful.

Yet we were afraid that because he just had his accident, any transfer would be unsafe. However, the doctor said that he was transferable, so we were forced to move, or else insurance would not pay for the care given at St. Jude. So after a week, on Jan. 12, we could not postpone the transfer anymore, and my father was transferred to Whittier Hospital Medical Center.

The transfer was not easy. In fact, we think they may have bumped my father’s eye and caused some trauma. The stay at Whittier was for two weeks, and it was not really enjoyable. It was like trading a sports car for a sedan. We could tell that the doctor in charge of my father was already assuming the worst. He hardly came in to see him, and the nurses did not observe him as much as they should have. The doctor told us that the swelling in his eye was from a lot of liquid in his body due to IV.

Toward the end of the second week, our doctor insisted my father was brain dead. He had an EEG done, and according to him, it said he was brain dead. I, however, had read that in order to confirm brain death, an EEG has to be done twice within 24 hours by two different doctors. They did not do that. Instead, they did one EEG, and two doctors signed off on that one. We argued and ended up having a discussion with the ethics board. After listening to us, they decided to do a CBF, which was a more accurate test of brain activity. The test showed that my father still had blood flowing into his brain, and because of this, he could not be considered brain dead. After this result, the doctor then told us that my father’s eye had experienced trauma when he was transferred from St. Jude to Whittier. What he told us really discouraged us, as we felt he withheld the truth from us.

With those results, we requested a transfer to Kindred Hospital in Brea, which is one of the nation’s best rehabilitation hospitals. Insurance finally approved, and this time, the transfer went smoothly.

When my father was at Whittier, he showed barely any signs of random reflexive response and did not breathe over the ventilator. He was also still having unstable blood pressure, even with medication.

However, two days prior to the transfer, his finger started to twitch. When he arrived at Kindred, on Jan. 26, everything changed. I personally believe that my father felt the difference and felt Kindred was safer. He started to have tears coming out of his eyes, and he showed signs of breathing over the ventilator. In fact, one of the respiratory therapists did a test, and it showed he was able to breathe on his own for four to six breaths. This gave us more hope, as it also showed my father was not brain dead as the doctor at Whittier claimed. Also, three days after the transfer, my father’s blood pressure stabilized without the use of medications.

Then on the fourth day at Kindred, on Jan. 29, our doctor from Whittier, who was still our designated doctor at Kindred, came to do his mandatory check-up. My mother told the doctor about the reflexive responses, and the doctor decided to do some random tests to see. After the doctor left, we noticed within a few hours that my father’s stomach was bleeding. My father had a feeding tube and also a tracheal tube placed when he was at Whittier Hospital.  The bleeding came from the feeding tube, and my mom still believes the bleeding started after the doctor physically touched my father’s stomach during the tests. The bleeding continued for 12 hours. Because Kindred did not have an emergency room, we had to send him to St. Jude again to stitch up the bleeding and then bring him back to Kindred. It was our fourth transfer now within four and a half weeks. We felt very nervous, as any transfer to us was scary.

When my father returned to Kindred, I immediately asked for a switch of doctors. We were blessed to receive the head pulmonologist at Kindred. He has been very kind to all of us and has been very encouraging.

Since my father has been in Kindred, he has been off all medicine, except for his insulin and his food. His blood pressure has been stable and not high at all, which is great because he used to have hypertension.

The past two weeks that he has been at Kindred, he has had a lot of random twitches in the head, and he seems to even almost smile at times. We also feel like he has had reactions to some questions at times. However, they have been really random, and we cannot say the reactions were voluntary or done on demand. However, we are very hopeful. Although it has been a difficult journey, we still have faith.

Just a few days ago, on Feb. 12, 2010, Kindred’s neurologist came in, and what he told us gave us a confirmation. After checking my father, he described my father as being “shut down.” He said that only two percent of his brain is still functioning, and he may be like this for the rest of his life. However, the big confirmation is that my father is definitely not brain dead, as his heart is still beating. If he were completely brain dead, then within a week, his heart would have stopped.

It is incredible that the neurologist used the words “shut down.” Those were the exact words my father used when he told us about God’s plan for him. With those words, we truly believe that, in time, my father will wake up and be completely healed.

We held on to our faith and still hold on to it to this day. As of May 25, 2011, after 17 months of battling, my father was finally relieved of the suffering he had endured. He never woke up from his coma, although we believe he was getting better. There were 6 months of complete stability. If not for a few human errors, he probably would’ve continued to get better. Even the reason he has moved on to a better place was human error, not out of natural causes. My father had a mucous plug stuck in his ventilator pipe, and the respiratory therapist did not arrive in time to free it. The ER doctor came in and decided he would not pursue resuscitation because of his unstable heartbeat, and therefore allowed him to go.

We still believe had these things not occurred my father would be healed. This is something that I don’t believe will change. We are at peace because our father is in a better place, and I believe he is smiling and having a great time with the Lord.

Joshua Lee's Story

 

*Update on Sept. 17, 2013: Uncle Joshua returned home to be with the Lord on July 12th, 2013. We are grateful for all the love and support everyone has given us these past few years. God bless you all! 

My uncle started having breathing problems about ten months after my father fell in a coma, and 1 year after my father was clinically diagnosed for MND. We weren’t sure what it was, but he said he was having harder time breathing. He was afraid it would be the same disease, even though; familial ALS is only in 12% of all ALS diagnosed. I believed it wasn’t. In the next two months, his condition got worse and he eventually needed a tracheostomy to assist him in breathing. He had it done in February of 2011, and has been in the hospital since. He clings on to hope, and is optimistic. He doesn’t know my father has passed as we try to keep him cheerful. We visit him as much as we can, and hope that a cure will be discovered soon.

These past 5 years has been the hardest my family has ever faced. We've lost our father, grand-Uncle, and grandmother all in the past year. We are just grateful for our friends, family, and all those who assist us. It has been a truly humbling and blessed time, and we thank you!!!

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