Jim and I have talked about our plans for disclosure of something of this magnitude for quite some time. There is just not really a good way to divulge the heavy weight on our hearts. We are facing the biggest challenge of our lives. The fight to live. Facing a disease with no cure….one that would alter the course of our hopes and dreams. We decided that we wanted to become active in finding a cure and be transparent in our journey with a blog on what we are going through and the challenges that this disease presents. It is hard to tell the story over and over and many people have heard rumors of different diagnoses. We are hoping that you will come along side us and most importantly offer your prayers for Jim and his health, for our boys and our family and that we will be given the strength and fortitude to meet this challenge head on.
The heavy truth is— Jim has been diagnosed with Amyotrophic lateral sclerosis- ALS (aka Lou Gehrig’s disease). ALS is a progressive neurodegenerative disease that affects motor neurons (the nerve cells that control muscles) and causes muscle weakness, paralysis, and ultimately respiratory failure. Most people with ALS live 3-5 years after their first signs of disease; approximately 10% of people live 10+ years. There is no cure for ALS and there are no proven treatments; nothing you can do that has been proven to slow the progression or alter the course. It is progressive and relentless. He is currently taking the FDA approved medication (Rilutek or Riluzole) for “treating” ALS and it extends survival about 2-3 months.
November 2, 2018 The day ALS became our Story
It was a Thursday, I had my Women in the Word, Bible study and a lunch afterward before returning home. Sam was home and was busy getting ready for a weekend fishing and hunting trip in south Texas with friends, and we had a designer arriving to measure for new blinds in the front bedroom to cut the glare in to the main room and give privacy for our guest bedroom. Jim came home around 1 wearing his usual blue, office scrubs. But something was different. His face was drawn and he looked scared. I shook it off and when Sam had left, Jim came to and said, “I need to talk to you”. My heart sunk….I instantly knew something was wrong. But I NEVER expected to hear the words that came next.
“I’ve been having weakness in my right thumb. I began to notice it a few months ago, especially when swinging a golf club.” ( Jim is an avid and fantastic golfer!) After several months of worrying about it, he decided to go see a neurologist in Dallas to hopefully alleviate his fears. He saw Dr. Allan Martin at Texas Neurology and had EMG testing done. The doctor could not definitely say, but he feared that Jim may have ALS. The most dreaded, incurable disease imaginable. “They are afraid I may have ALS”, he said. My world completely rocked. I did not even know that he was having these feelings, much less than he had a doctors appointment. There is no way to be prepare for that kind of news. I knew what it was. The father to one of our sons baseball team-mates had the disease. We held each other and cried. We immediately began to pray that the doctors feelings were wrong. It wasn’t a diagnosis at this point. It was a “maybe”. We held onto hope that it could be anything else but ALS. The doorbell rang and I had to deal with the drapes. These are the things that keep us sane.
The next hours and days were like moving through mud. Things continued to be normal all around us, be we were not normal…nor would our life be normal again. We would have to hold onto our faith and find a new normal going forward.
We were grateful our son, Sam, who was living with us during the off season of baseball, was gone for the weekend, as we needed that time to grieve and begin to process this news. Jim went the next day for a brain MRI, then the following day for an MRI of the Shoulder, all the while hoping that there would be some indication as to why he was having muscle weakness. Sometimes head and neck injuries will cause similar symptoms. Jim was an All American High School football player, and played college ball at The University of Texas at Austin for 4 years. He also suffered a head on car collision while in medical school and broke his neck. It seemed fairly hopeful that those factors could be causing his problem. The tests were all negative for nerve damage. A second opinion was recommended by Dr. Martin and so we got an appointment with Dr. Sharon Nations at Southwestern Medical Center in Dallas.
We saw Dr. Nations on December 8, 2017 nearly a month after the initial doctors visit. Both of us exhausted and weak from lack of sleep and loss of appetite. She did the same nerve conduction tests and EMG ( needle testing to the muscles to show weakness.) She found additional weakness that Dr. Martin did not find. She also said she felt it looked like ALS, but still not definite. It is a hard disease to diagnose. She did throw out a hopeful diagnosis. Something called, Multi Focal Motor Neuropathy, and it is treatable! The only way to know if that is what you have is to be treated with IVIG, intravenous Immunoglobulin. We held on hard to this hope and agreed to do the treatments for 3 months, beginning January 2, 2018. Happy New Year.
IVIG was 4 days of infusion therapy at Moncrief Cancer Center, a really nice hospital setting and a great staff. The next month would be two days and then another 2 days a month later. So, we spent three months hoping and praying that he had MMN and not ALS. If Jim responded well to the medicine then that would be a good thing an he would continue to take the medicine and regain his strength.
We returned to Dr Nations on March 8, 2018 for a follow up. More testing of Jim’s strength in his hands, toes, arms and legs ( no needles this time!) and she said there was a little bit more weakness that wasn’t there before. By now we had been down this road several times. Each time hoping that the answer will be different, and each time we were disappointed. She came out and said. “I am sorry. I believe you have ALS”. The good news in all of this is Jim has caught it really early and it appears to be a slow progression. Dr. Nations prescribed Riluzole, the only drug that has been on the US market until now and slows the disease a little bit, and also began the process for getting him approved for a brand new drug called Radicava. This is great news! Radicava ( from Japan) was just approved in 2017 as the first drug in 20 years to slow ALS symptoms. The drug costs about 200,000 a year but fortunately Jim went on Medicare last November, his 65th Birthday, and it is mostly covered. We are currently working through the process of starting the Radicava Medication. It is also an infusion, but only 1 hour each day and for 14 days in a row, with 14 days off. Repeating monthly. Is this the new “normal”? I forgot what life was like before the idea of “ ALS”.
How on earth do we tell our sons. Yes, they are grown young men, but age does not alleviate the pain from such a harsh message. Blake, Jim’s oldest and his wife Tracy, expecting their first, long awaited child in March. Max, who is in College full time and working on a Journalism degree, and our youngest Sam, a professional baseball player for the Colorado Rockies, having an incredible year and a Top 30 ( #12) MLB prospect working so hard to make it to the “Show”. It seems so unfair, but what would really be unfair is not to include them in this journey. The truth is….we don’t know how or when this disease will progress and with the new drug Radicava, and the even newer drugs on the horizon, that we are desperately trying to fund and bring awareness too….we have hope.
Since we first reached out to our family and close friends to tell them the news and to ask for prayers, we have a new appreciation for just how valuable this support means to us! You know who you are:
Dinners, prepared food, and efforts to ease our first treatment with IVIG.
Daily words of encouragement via text, cards, email & phone.
My best friends that I can call, any time, night or day and cry or vent. God I need you.
Many references and advice from friends who knew or know someone who had/ has ALS.
People who heard something was wrong and took the time to reach out and ask…and then pray.
Personal friends in the ministry who have made it their mission to check on us daily and weekly.
The people I have come to know and rely on who are walking the same path we are walking. Priceless.
Neighbors who know and quietly try to help out in so many small ways without making a big deal of things.
I know this is hard. Friends, family, even acquaintances don’t know what to say or how to act. We get that. We’ve been there! There is nothing to be said or done on anyone’s part that will change things. But Lord, how we appreciate the encouragement and prayers that have been offered in so many different ways. That is the best and most important thing we need right now. Prayers. Prayers for healing, for strength, for answers, for grace and mercy, for clarity, for peace and for protection over our family as we figure out how to maneuver a disease with no cure. To pioneer trials and methods that may do nothing to help extend Jim’s life or to fight for the hope of the one thing that could save his life, or others who suffer from ALS . What do we need to hold ourselves together in the midst of this storm? We need your prayers more than anything. Thank you to those who offer them diligently. We also need funding for a cure.
Accepting our Challenge.
I don’t want ALS to be part of our life story, or our sons’ life story, but without our permission, it has become our story, and so….we have to make it a Great Story!
#EndALS #ALSTDI #strikeoutALS #TeamHilliard
So what Charity?
Our family’s preference is the ALS Therapy Development Institute, the world’s foremost drug discovery center focused solely on ALS. Its innovative science and cutting edge approach have resulted in the identification of AT-1501, a promising treatment candidate, which will advance into Phase 1 clinical trial in 2018. ALS TDI also pioneered the ALS Precision Medicine Program, the world’s premier program and partnership with people living with ALS to discover additional potential treatments.
These funds go directly to ALS.NET Research.
Now, Jim needs us. He needs you. Those who live with ALS need you.
Thank you for your donation to ALS.NET