Today is November 2, 2018. Exactly one year ago….Jim came home from a Neurology appointment that I had no idea he was having and gave me the awful news that there was a chance he may have Lou Gehrigs’ Disease ( Amyotrophic Lateral Sclerosis or ALS). It seems like an eternity ago. For months we cried and prayed that it was not true. That there would be some other crazy explanation for Jim’s symptoms. Jim endured test after test, and got several opinions. He endured 3 months of IVIG infusions lasting 4 hours each day for several days in a row each month, hoping to stave off the diagnosis of ALS. By March 2018, they were definitely diagnosing him with ALS. Jim and I both are believers in a God who is Sovereign. A good and just God, one who sent his son Jesus Christ to pay the price for our sins and give us the opportunity to know Him better and live better lives by trying to follow Biblical teachings. We also know that just because God is good and just, it doesn’t mean we are exempt from suffering. We just know that God is with us, whatever our lives bring. That has brought us great comfort. We pray every day that our friends and family feel this too. So here we are commemorating an anniversary, we never asked for and making the best of it!
I want to share some highlights of the past few months with the Hilliard Family. You can stop now if you are bored, but this is great therapy for me!
July and August were hot, and relatively uneventful. Jim and I have lapsed into a routine of early morning coffee, bible, scouring the internet for baseball news and generally wasting time on twitter news and facebook fodder. We are very accomplished! We are also in a rhythm of two weeks of Monday through Friday Infusion treatments and then two solid weeks off with no “drip”. It is not much trouble, no side affects and is a great morning filler! Many people have asked us, “Is the Radicava Working?” The simple answer is…we don’t know. There is no way to measure whether or not the medicine is actually slowing the progression of the disease, unless we just stop getting the medicine and see what happens. Not an option! So we continue to plan any travel arrangements around the two weeks that Jim is off his infusion treatment.
We love our almost weekly or bi-weekly dinners with our son Max and our not often enough, but precious, encounters with B, Tracy and Grandson Charlie. We continue to be amazed at so many of our friends and their continual love, prayers and support. Each week continues to be filled with dinners, and invites to our friends homes. Neighbors constantly bringing us freshly baked bread, goodies and homemade soups. ( You know who you are!) One thing we have learned after having been diagnosed with this dreadful disease, is that God is with us every step of the way. We feel it in the cards we received in the mail and the texts and phone calls that are constantly encouraging us, and the people He has placed in our lives. We realize we have a very long journey ahead of us, and a very difficult one at that. But the love of friends and family sustains us and makes us confident of how blessed we are!
Even though Jim’s disease seems to be progressing relatively slowly, we still see the weakness that continues to plague his body. Both of his hands continue to weaken, and his right foot and ankle are becoming weaker. He continues to use the VPAP machine every night and for many hours during the day while he is reading, but is noticing his core and diaphragm muscles weakening. The doctors have told us that this is one of the most important things he can do to slow down the progression and protect his diaphragm muscles from weakening too quickly. The one side effect of this is constant air in his belly which becomes very uncomfortable. He’s doing really well with maintaining his weight which is another thing that the doctors have told us is very important to keep the progression at a slower pace. Jim has always been a competitor….I have no doubt in his ability to win nearly any challenge put before him!
Some of the other areas that could be affected are the muscles used to swallow and eat and also to speak. We are prayerful that Jim will not experience these, but we are preparing for all possibilities. I feel strongly that if we know what we are facing and we are prepared, then if and when we have a challenge, perhaps we will be better prepared for it. Since wrapping my mind and heart around Jim’s diagnosis these past 11 months, one thing that frightens me is the potential loss of his voice. I cannot imagine not hearing him, not being able to communicate with him or hearing him say “I love you”. If you know Jim, you know he has a LOT to say! There is so much out there now with modern technology and adaptive tools for patients and caregivers to be able to deal with ALS. It feels crazy to be doing this, but Jim has already been working on Voice Banking. There is technology out there that can transfer his actual tone and inflection onto software that is worked by eye gaze technology and a computer. Jim is almost finished with banking with 3 different organizations that use this technology….just in case. We hope we never need it, but it is in the bank just in case. If you want to read about these technologies you can click on these links.
Late August, we took a trip to the East Coast with our dear friends, Laura and Tony Brentlinger. We explored Newport, Rhode Island and had a wonderful time by the sea at Gurneys Resort. We had amazing meals, explored the mansions of RI and did some great sight seeing and shopping. We had a great time exploring this special nautical town. ( AVAP Breathing machine goes with us when we travel and it is really easy so far!)
The Brentlingers’ went back west and we traveled over to Hartford, CT for one last home stand with Sam’s Hartford Yardgoats. Jim’s brother, Mike, also traveled to CT to join us for some family fun and baseball. So grateful that we have the ability and freedom to travel and enjoy Jim’s retirement!
In September, Max settled back into University with his FINAL semester at UTA. He also was named Editor of the Lifestyle and Entertainment desk for Fall semester at the university newspaper, The Shorthorn, so he is busy working and finishing up his degree in Journalism. Graduation this December!! Sam finished his season and returned home for a few weeks. He was named to the Arizona Fall League by the Colorado Rockies, which is a HUGE honor. This is a prospect league made up of top players from all 30 major league teams. Sam was placed on the Salt River Rafters and will be in Scottsdale, AZ until mid November. So far he has had a stellar season. You will have to wait until next Blog update to find out how that all turns out!
We also had a special dinner with Blake, Tracy and baby Charlie at our home. It was Sam’s first time to meet his first nephew, since he has been out of state since before he was born in March.
We rallied the troops in Mid-September to attend and support a cause near and dear to us, bringing awareness and finding a cure for ALS. The Cowtown Affair benefitting the ALS Association of Texas held its’ first event in Fort Worth. It was our first benefit to attend and I must tell you how humbled we were at the support of our friends and family as they turned out in mass! I think we were about 28 strong and my brother Greg and SIL Kim ended up bidding and purchasing the painting done on sight by Leighton Autrey. Friends Emily and Collin Hadley were honored for their efforts in bringing awareness to the cause of Finding a cure for ALS.
After attending the ALS Cowtown Affair where we were all given red wristbands that said, “Create a World Without ALS!”…I was inspired to create our own prayer/ awareness bracelets for Team Hilliard and Jim, with our Research Fund website imprinted on the band. We are amazed at the outpouring of support for our efforts for a cure since May 1, 2018. Baylor Orthopedic Spine Hospital ( and the staff and physicians from BOSHA) made a significant donation of $10,000 last month and we are so humbled at their generosity and the love and gifts from so many. We have raised over $60,000 since May and we will not quit until we understand this disease and a treatment is found. I have plenty of extra wristbands….if you would like to have one or a few/ email me with your mailing address and I will send them.Strike Out ALS! http://www.als.net/ teamhilliard
First week of October brought our first ALS Clinic in Houston at Methodist Hospital. Going forward, we will be on a four month rotation, visiting Houston each time to assess Jim’s needs, though, each doctor and therapist is merely a phone call away with any questions or needs. Clinic is an amazing effort put on by the Methodist ALS team of doctors, nurses, staff and all other disciplines needed in assessing and accommodating patients and caregivers facing ALS. It all happens in one day and the environment was cheery, friendly and busy as you were never sitting in a room alone waiting on a physician or therapist. We met many other families dealing with the same challenges, some further along, others just beginning. It was like a cocktail party without the cocktails! The entire Clinic had a family affair feeling and though we got there early in the am, we were done and out of there by 3:30. We were grateful that Jim’s sister Claudette spent the day with us and our friend, Connie Koinis, from Houston, came by and brought Greek pastries! Connie and I have been phone friends since being introduced by a mutual friend. Connies’ husband Pete is fighting his own battle with ALS. It was so great to meet her in person! There is a chance that Jim could be a candidate for a clinical trial beginning soon in Houston/ Boston. Dr. Appel is launching a Phase 2 trial using the extraction of T- Reg Cells. I have attached a link to a news story that explains the process. Prayer Request:Pray that if it is God’s will, Jim is chosen for this trial and that it might bring success to the research team and be a step forward to slowing or stopping the progression of ALS. The benefits for Jim would be possibly stopping progression for the year long trial. The risk….not knowing what will happen after the year is up. We got to spend the evening at Jim’s brothers house for a wonderful family/friends dinner! My birth mother Louise was able to come and Jim’s long time friends from Port Arthur and UT Football, Paul and Mary Anne Walker came too. Sometimes challenges open the door to better relationships and kindness!
Mid October our first born turned 28!! Happy Birthday to you! You are such a joy and support to your Dad and me. We look forward to what your future holds!!
OCTOBER BASEBALL? Oh yeah!
Since Sam was assigned to AZ Fall League, we made another excuse to fly out for a baseball adventure! Again, retirement is a true blessing! We can go when and if we choose ( except for infusion weeks). We flew to AZ for a week of sun, great baseball, amazing meals and a little shopping and girl time for me with my sweet friend Tana Herrington. Pics to prove it!
We are home from another sweet trip together….and it is the eve of November 2, 2018. One year ago tonight, I had no idea how our lives would change the next day. Love your family, hold them close. Be kind to others and focus on what is good and right in life. We are holding onto the promise that God loves us and is sovereign in all things….even the hard times.
More celebrations to come in November and December. We are grateful for each and every one! I am going to make a commitment to blog every couple of months instead of waiting so long. Me thinks I talk too much….and this was the condensed version!!
“Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”
My last blog post was the end of May and we have been so busy the entire month of June and the end of July is quickly upon us. Today is July 20, and we find ourselves back in the hospital for outpatient surgery to replace a medical port that Jim had implanted on June 1. All went well but in Mid July the nurses at the infusion center kept failing to be able to access it…so it was back to Dr. Stiefel. Turns out the port is bad and they are replacing it today. But….since June 1….
Thats is us in the Hospital bed June 1, waiting for our friend, Dr. Paul Stiefel, to take him away to have the port implanted. Good times!
The next result of our very intensive Houston Memorial ALS evaluation last May was the visit from Jordan, our new Respiratory Therapist, with RQS Breathing Services. Jordan brought Jims’s new AVAP machine, that we quickly renamed “RQD2”, since it looked like a robot on wheels. He also brought a Cough assist machine and taught Jim how to use it 3 times a day to do deep breathing exercises that his Pulmonologist, Dr. Holland, prescribed for him. We are truly grateful to finally have some tangible things to do to fight off the creeping ALS. But honestly….this delivery was a reality check into how much our lives have changed and will continue to change. God is good every day and all the time, even when it seems like there is no hope….hope appears. I am reminded of a favorite verse and one our friend and pastor, Russ Barksdale tells us to hang on to…
but those who trust in the Lord will renew their strength; they will soar on wings like eagles; they will run and not become weary, they will walk and not faint.
So we trust and hang on!
The middle of the month brought two of our favorite things to celebrate! Fathers Day and Claudettes birthday, which almost always falls on the same weekend. An added bonus was we got tickets for the Friday night match of the Colorado Rockies vs Texas Rangers. Rockies won, which we all determined was a good thing. This year Jim’s brother Mike and his daughter Andrea joined us for the weekend and for fathers day dinner with Max, Blake, Tracy and lil’ Charlie too. Only son missing was Sam….he’s doing that baseball thing. While we were celebrating Dad at home, the Yardgoats celebrated their dad’s with photos of the players with their Dads on the big screen and on Social Media. LOVE this photo of Jim pitching to Sam. It’s a forever favorite. We had a lovely Fathers day meal and celebrated Claude’s birthday the night after. She turns an incredibly young 75 this year!
give thanks in everything; for this is God’s will for you in Christ Jesus.
June also brought the fitting of a leg orthotic. Jim really doesn’t need it yet….that is one things I love about our Houston Care team….they are on things before we need them! There is no reason on earth that someone fighting ALS should have to struggle without the proper equipment and care….even if insurance is an issue or money is tight, the ALS Association of Texas (or any local chapter) has equipment and aids available on loan for those suffering from ALS. It took a couple of visits to the Orthotic specialist to get things just right and when we finally got the fit…it was off to shoe shopping for a shoe that would work well with the brace. We landed at New Balance and seemed to pick the first tennis shoe that fit….I could tell Jim was so uncomfortable with this purchase. It was another reminder of what we face. We are grateful to have the aids, but it is hard to let go, piece by piece of even the tiniest of independence. The brace stayed in the car for two weeks and made its debut in Hartford, Connecticut on our second visit to see Sam and watch some Yardgoats Baseball. Experience from our May trip reminded us how much walking there would be as the stadium, Sam’s apartment and our hotel are all located downtown, so walking was the mode of transportation.
The first of trips out East to cooler weather were in our June and July Forecast, just in time for the Texas heat to really fire up!
We flew into Hartford on June 24 and were looking forward to four Yard Goat home games. We had great food, wonderful weather and special time with Sam. He even hit a home run while we were present! One of my friends and Miss America State sisters, Lorine Zdanowski, Miss CT 1985, lives in the Hartford area and she and her husband joined us for a game and then the following day, treated us to a private tour of ESPN. Lorines’ husband, Mark, has worked for ESPN for years and made arrangements for us all to tour the amazing facility. Besides sitting at the Sports Center desk with Sam, the highlight was probably seeing the Baseball Tonight set. We also had beer or two after our last game at City Steam Brewery near the field and Sam’s condo. We were surprised to see them supporting ALS TDI with their Ales for ALS promotion. All sales of the beers affiliated with Ales for ALS give dollars for research to www.als.net. This is a nationwide project…so watch out for Breweries in your area that support ALES for ALS! We all had a beer and toasted to a cure!
May he give you what your heart desires and fulfill your whole purpose.
While heading home on Friday, June 29, I happened to purchase the wifi so I could use the internet on our flight…I was so glad I did because Sam texted us with exciting news! He had been named to the Eastern League AA All Star Team! This is Sam’s third year in the minor league to be given the honor of ALL Star and the second year he would participate in the Home Run Derby!
Miss Texas Reunion
July roared in with my solo trip to The Miss Texas Pageant and a lovely reunion with some of my closest Miss Texas sisters! Hard to believe it has been 34 years since being named Miss Texas 1984. Jim stayed home and went out to dinner with some of his close friends. So many of our friends and neighbors go above and beyond to check on us and make sure we have a dinner invite on the calendar every week! Love them!
There wasn’t much time to waste because we had to quickly plan our trip to New Jersey the next week to watch Sam at the All Star Game and Home Run Derby. We had to figure out how to schedule Jim’s Radicava infusions around being gone in the middle of a treatment week! We would only be gone two full days and can make up those two treatments on the weekend upon our return.
We couldn’t get out of town though without a Birthday dinner celebration for Blake. He celebrated his 34th birthday on July 7 and we had a lovely dinner in Frisco at Zaytinya. Claudette was with us as she was going to New Jersey too, to cheer on Sam. We got to hug and poke on lil Charlie too and hopefully gave Tracy a break for an hour or two.
We all treated ourselves to first class tickets to Phillidelphia and took a rental car to Princeton, NJ where the official hotel hosted the Allstar teams and families. The game was actually in Trenton, NJ, just 5 miles down the road. The Home Run Derby was so much fun and Sam was not only the crowd favorite but he blasted 13 HR’s in the elimination round, emerging as one of the two who would go on to the final round. They hit balls for 4:00 minutes straight, with a 30 second break at the halfway mark. He was edged out in the final round by Deivi Grullon, who won the Derby by one home run, 10-9 final. We were super proud of Sam and of course, thought he was the best!!
Day two, Claudette and I decided to take a tour of Princeton University and the shopping area close by. What an amazing campus! We felt like we were walking through England or Hogwarts in the Harry Potter movies. Jim stayed behind to rest and read before the All Star game that night. The game was uneventful for Sam and our team, the East lost the game, but it was pomp and circumstance and we all had a blast.
This brings us pretty close to present day. The day following the ALL Star game, Jim jumped right back into Infusion treatments, but the nurses were having trouble accessing the Medical Port. That meant they had to do an IV each day to administer the medicine. After several tries, Jim went to see Paul Stiefel to find out what was wrong. They determined it was blocked or clogged and would need to be surgically repaired. We are really missing the amazing weather of the northeast! Nearly every day since being home from New Jersey it has been 100 degrees or hotter!
So here we are today, back at USMD in Arlington. It is 108 degrees outside, but might be below freezing in this hospital! The surgery went great and they did not have to replace the port, but it did have significant scar tissue and inflamed soft tissue all around the area. They cleaned out the area and repositioned the port a little lower on his chest, stitched him back up and he is good to go. Thankfully, Jim’s final infusion was this morning, so now he has two weeks to heal before going back for 10 more days of Radicava. We are praying that this medicine will help slow down the ALS that is slowly creeping over Jim’s body and we continue to pray for all of those people and researchers looking for a cure. Looking good Jimmy!
I have fought the good fight, I have finished the race, I have kept the faith.
Robert James Hilliard, M.D. passed away peacefully on September 12, 2021, from complications of ALS, surrounded by those who loved him. We rejoice that he is now in His Father’s house. In lieu of flowers, please make donations in Jim’s honor to:
FORT WORTH – Robert James Hilliard, M.D., won his battle against Amyotrophic Lateral Sclerosis on September 12, 2021. His broken body is now whole as he is rejoicing with his Heavenly Father and Savior, Jesus Christ. Jim was born on November 15, 1952, to Frankie Estelle Alexander and Henry Claude Beaumon Hilliard in Port Arthur, Texas. He graduated from Thomas Jefferson High School, where he was elected to the Senior Ball Court each year, was an All-State Offensive Guard and was recognized as an All American Offensive Guard in many polls his Senior year. Jim received a full football scholarship to the University of Texas in Austin.
He graduated in 1975 as a UT Letterman with a degree in Biology. He continued his education at the University of Texas Medical School in Galveston, Texas, and graduated in May of 1979. His General Surgery Internship was completed at Baylor University Medical Center in Dallas. His Orthopedic Residency was completed in June of 1984 in Galveston. Dr. Hilliard began in private practice as an Orthopedic Surgeon in Arlington, Texas in 1984. He had a private practice for many years in Arlington, Texas before being instrumental with a few others, in creating the orthopedic group, Arlington Orthopedic Associates in 1996. AOA is now one of the most successful orthopedic groups in the state.
Jim married the love of his life, Tamara Hext, on May 28, 1988, bringing with this union his precious three-year-old son, Jonathan Blake. They made their home in Arlington and began their family with the addition of Joseph Maxwell in 1990 and Samuel Beauman in 1994. Jim and Tamara built their dream home in 1993 in Mansfield, Texas where they lived for 22 years, raising their kids in the Mansfield School system.
Jim loved being a surgeon and was a brilliant mind, often reading a range of books from novels to biographies to an entire library of Theological Studies. Jim became a follower of Christ in 1999 and became a master at Apologetics and the history of Christian religion. He loved to garden, cook and enjoyed an array of outdoor activities over the years including tennis, marathons, mountain biking, hunting, cross country skiing and eventually golf, his most favorite outdoor passion.
Jim Hilliard loved his family deeply, caring for his mother, Estelle, who lived with them for 15 years until her death in 2007. His biggest passion was his boys. He loved teaching them about life, sports, and most of all about the love of Christ that he became so passionate about. Jim supported many ministries over the years including, Faith in Practice, Reasons to Believe, Search Ministries, Metroplex Women’s Clinic, and most passionately, Children’s Hunger Fund.
If you knew Jim, you knew he had a wicked wit and loved bantering with whomever he was close to. If he picked on you, he loved you. He also enjoyed a healthy debate of thought on serious topics like politics, religion, and philosophy. You had better know your stuff if you tangled with Jim Hilliard because he was most often correct and had a deep knowledge of all things. Jim had many who knew and loved him. Making and keeping lifelong friends was one of his many gifts.
The Hilliard’s sold their family home in Mansfield, Texas, and moved to Fort Worth in March of 2015 to be close to long-time friends and closer to the clubs where Jim loved to play golf. He loved to golf and he made it his main hobby and enjoyed playing with close friends and traveling to different destinations to challenge his game. It was during the game of golf in October of 2017 that Jim began to notice a change in his grip and golf swing. Along with other symptoms, Jim began to fear the worst, that he might have Amyotrophic Lateral Sclerosis and began plans for early retirement. The diagnosis would be confirmed by multiple Neurologists by March of 2018. Jim faced this battle head-on both in his faith and also in his ability to understand all the latest research and potential trials for ALS. Though today there are more promising therapies on the horizon, there was and still is no cure for ALS.
The four years Jim fought ALS were filled with many friends, family, doctors, and caregivers that all made living with ALS so much more bearable. The Hilliard family would like to thank Drs. Appel, Burk, Peralta, for their care, and Drs. Ramsey, Brentlinger, Purgason, and Stiefel for their friendship and care. Additionally, the Hilliard family would like to extend thanks to caregivers Amy Aceveda, Megan Dildy, Brandon Gaddy, Jordan Moree, and James Moses for hours of gentle and kind care, and Beyond Faith Hospice during Covid 2020. As well, the Hilliard family would like to thank Knights of Comfort Hospice and Waldo Rios for holding his hand and making him comfortable until he embarked on his Heavenly journey.
Most of all, love and thanks to the “Tribe”. Special neighbors and friends who loved with passion prayed without ceasing, held our hands, brought food, cleaned, walked our dog, and checked and loved on us daily, there is no place like home. Special love for Jim’s dear friends, pastors, and mentors, Russ Barksdale and Randy Frazee.
Jim is survived by his wife, Tamara; siblings, Michael and Claudette; sons, Blake, Maxwell and Samuel; daughters-in-law, Tracy and Katalin; grandsons, Charles and Cameron; and many more in-laws or extended family members who loved Jim dearly. He is preceded in death by his mother, Estelle and his father, Claude.
Celebration of Life for Dr. Hilliard:
Church on Rush Creek 2350 SW Green Oaks Blvd, Arlington, TX 76017 October 9th, 2021 ~ 11:00am
John 14:1-3 “Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.”
This post is from last July 2020 and is updated through Oct. 2020
Blogging has been difficult this past year as Jim’s care has increased significantly! Will do my best. Love to all who reach out to us and support us! XOXO
July 2, 2020. Exactly two and a half years into hearing ALS for the first time. So much has changed. I can’t believe I started the blog with the intent of chronicling life in our family as we fight this awful disease with no cure. The last time I wrote and published was May 2019. The summer of 2019 was a blur, filled with frenzied trips to minor league baseball games from New Mexico to Tennessee to El Paso. Sam’s Big League Debut in Denver with the Colorado Rockies, another trip to Denver before the season ended. Baseball ushered us into the fall with Jim’s 67th birthday and retirement gala, ALS Charity Bash that hosted over 200 friends and family and raised over 125,000 dollars for ALS research for ALS Therapy Development Institute. Thanksgiving and Christmas quickly followed and there was just no time to sit down and write. I tried multiple times to catch up, but before I knew it is was January…February….then Corona Virus hell broke loose.
We were managing pretty well up until Christmas, even though Jim had progressed pretty quickly from walker to Power Wheel chair by Thanksgiving. On Christmas Eve, he took a fall that would completely confine him to his power chair….for good.
So…instead of trying to play catch up and detailing every event over the past year and a half with pics and commentary, I am going to write an essay on what a day in the life of being a caregiver for Jim Hilliard is like, two and a half years post-diagnosis.
I lay in bed, a pillow between my legs to support my back, another pillow over my head to keep the streaming sunlight from hitting my face. Miraculously, both of my rubber earplugs are still intact. A trick I learned a long time ago to help me live with the whoosh and swooshing sounds of Jim’s Trilogy AVAP machine. I am not quite awake. I am still sorting out the dream that is still at the forefront of my consciousness. It is a good dream, so I don’t want to wake up yet. “Whoosh, Swoosh, Whoosh, Swoosh”. The sound slowly brings me to the now daily reality I wake up to every morning. “Oh yeah….we have ALS.” When reality hits me, I take time to savor a few more moments in bed before beginning the routine that Jim and I have created that will make life easier for him. I begin to pray. I try to focus on praising God for who He is and take comfort in knowing that God has a plan for our lives and loves us, even though we are going through a difficult time. I thank Him for our many blessings, I pray that He will heal my husband and if that is not His will, that He will give us the strength to get through each day. I turn my focus on my children and their lives and pray for protection and health for them. I pray that they would seek to know God and I also pray that they too have the strength to accept and manage their feelings about what is happening to their father.
I hear Jim making noises, the ones that signal to me that he is ready to begin his day. I throw both legs over the side of the bed, feel my feet touch the fur of our big German Shepherd, Chivas, and gently slide my feet around his body so as not to step on him. I fumble around the bed for my glasses, buried amongst the covers, my phone, computer, and headphones…remnants of the night before and my efforts to wind down from the day while Jim settles into the Whoosh, Swoosh rhythms of the night. Before making my way to the chair where Jim sleeps. I head to the bathroom, pee, brush my teeth before gathering up the routine items that Jim will need to begin his morning. I always feel guilty that I do these things first, but I learned that if I don’t, the opportunity may pass and it will be a while before I get that chance again.
Washcloth soaked with hot water. Check. Urinal and tissue. Check. Hairbrush, for scratching. Check. I place all my supplies on the bench at the foot of our bed and gently lean over and kiss Jim on the forehead. “How did you sleep?” I said. “Good”, he murmurs through the full-on face mask that he sleeps with every night. In the last few days, Jim has had trouble with his mouth falling open at night and escaping the mask, causing the Whoosh, Swoosh noises to sound more like an air compressor machine. We solved this problem by ordering a chin strap that helps keep his mouth closed at night. Amazon has been our daily friend these past couple of years. I take off the mask, the chin strap, and then make my way around the chair to open the curtains to let the sun into our room. It is a beautiful, sunny morning. One that promises the heat that accompanies most July days in Texas. Chivas worms his way between me and Jim and does his ” I need to go outside” dance. I open the door and the warm rush of air confirms my suspicions of a hot day ahead.
Since Jim fell on Christmas Eve, he has slept in his power chair every night, but two. We tried moving him to the bed via Hoyer Lift, an amazing piece of equipment that I will explain later, but both times he was so uncomfortable both adventures ended in returning to the comfort of the power wheelchair. I think Jim feels more in control in the chair and also supported. So the night time sleep spot is the space between where he used to sleep on his side of the bed and the double doors that lead to our back porch. With the Powerchair and the trilogy machine next to him, that leaves little room for me to navigate around him. I clip the mask to the Trilogy basket, turn off the humidifier that is bracketed on the Trilogy and turn on the power to his chair. Pushing the button to raise him to a sitting position, I grab the hot towel and begin to wash his face and clean his eyes. He always has dry eyes from the air that inevitably escapes from the mask. Another kiss on the forehead and I remove the heavy blanket that is tucked all around his body, cocooning him into the confined sleep space. A quick run to the kitchen to grab his mug of leftover Dr. Pepper from the night before, to quench the dry mouth that greets him every morning. I push the button further, the one that tilts his whole chair forward, allowing him to slide each foot off the foot pedals and onto the floor. The right foot always needs my assistance. I grab the urinal and tissue and do what it takes to help him accomplish his morning pee. A quick drip, dry, and I maneuver the chair back to an upright position. I turn on the secondary Trilogy, the one that lives on the back of his chair and I move the sipper tube around in front of him, in line with his mouth. It has only been a minute or two, but he needs the breath support.
Jim is completely dependent upon me for everything now. Something I could not imagine 2.6 years ago. Amyotrophic Lateral Sclerosis. A.L.S. “Always Losing Something”. The perfect acronym for this disease. He has no use of his arms, his legs, and almost no use of his hands. I wondered back then, “How in the world will we manage ALS, after reading about the disease till I was sick to my stomach at the thought of Jim enduring such an awful condition. The truth is, we manage one day at a time. Never wondering what tomorrow will bring, but only what today offers. It is hard and sometimes I have to force myself to follow these rules. I can only imagine how Jim must feel. It is happening to his body. I am only watching. I dump and rinse the urinal, wash my hands, and affix the toothpaste onto his electric toothbrush, grab the paper spit bowl and head back for the final ritual before morning coffee and computer time. Brushing his teeth is an adventure. I follow the routine he use to do when he did it for himself. Thirty seconds on each quadrant of his mouth. I lay the dishtowel that I keep looped behind his headrest over his chest and begin the task. I have to work hard not to hit his teeth with the vibrating head of the brush….keeping just the bristles on the surface of his teeth. It almost always ends up with toothpaste spray on both of us. I hated doing this at first, but I have come to love doing it. I love that I can take care of the things he cannot. Spit, wipe and we are done. I fold up the blanket that had pooled to the floor. Reach across his body and move his Ram Cell phone holder back into place. Position the Power Chair controller where he can reach it and gently place his hand on top of the modified joystick. It has been replaced with a golf ball to more easily allow him to drive his chair. Once I put his hand on top…he is off, self-sufficient again and in control of where he will go.
Jimmy drives into the kitchen and parks by the island while I go and gather his morning and afternoon meds that I keep in a two-week pill organizer in the laundry room. I separate the pills into matching plastic sample cups, leftover from my Tay’s Gourmet Granola days, and wander back into the kitchen gathering the bottle of pre-made smoothie as I go by. I grab the cup I use for his smoothie and pour the appropriate amount of MCT oil into the bottom of his cup and topping it off to the brim with Blueberry Blast. We discovered early on that MCT oil in the morning all but guaranteed a bowel movement. Because of the loss of muscle in his core, going to the bathroom has new challenges. I have begun to separate the pills two at a time now between sips, as he can no longer swallow the whole batch all at once. We have to be careful not to choke. Choking is scary for people with ALS or PALS for short. Another acronym is CALS. Caregivers for ALS, for future reference.
Pills are down. NO issues this morning. Jim motors his way to the front room that use to serve as my office. We have two large, glass doors that overlook the cul de sac that we live on. We use to spend the mornings on our back porch, overlooking the pool while having coffee and computer time, but now that the summer heat has descended upon us, we opt for the air-conditioned comfort of my office with a view. Still, in my PJ’s and glasses, I head back to the kitchen to make his Flat White Coffee and my black coffee with heavy whipping cream. I grab my computer and phone from the bedroom. While the coffee is making, I take a few minutes to make my corner of the bed, fluff my bed pillows and arrange them perfectly aligned along the back of the headboard. There is something about making my bed in the morning. It makes me feel accomplished. It sets the tone for the day. Bed made, I can do anything! Bed not made, I am a slug. Today will be good. I take a moment to pause and lament the fact that I no longer have a full bed to make. Something I use to hate and I now I miss so deeply my soul hurts. I miss curling up and snuggling alongside Jim’s tall, strong body. I miss it real bad.
I sprinkle Jim’s coffee with cinnamon, grab the stainless steel straw and carry our liquid breakfast to the front room. I arrange the side table, just so that I can sit close enough to Jim to be able to reach across and offer him sips of coffee through the straw. I put his reading glasses on his face and adjust them to fit. We settle into the next hour or so discussing the weather, what is trending on twitter, what is happening in baseball, Covid19, and our crazy world. This part of the morning Jim likes to use his Macbook pro to peruse the internet and catch up on emails and news. Before placing his computer in his lap and opening the lid for him, I place a blanket over his lap and tuck in the edges, making sure his feet are covered. He is always cold and many times a day I am summoned to change the temperature or cover his arms or feet with another blanket. I place his hands in a way that will enable him to use the one finger that he can still control. It is as if he is determined to continue to use whatever is left in his body that he is able to manipulate. I don’t blame him.
We have great friends and neighbors. On most any morning, several of our friends in our neighborhood will be out taking their morning walk. Many of them take the time to stop and wave through the window, bidding us a good morning. They know our routine and that Jim will likely be looking out the window. It brightens our day, always. This completes what I like to call phase one of our day. The Morning Phase.
There is something particularly wonderful about having no place to go and nothing to do. It is what Jim had looked forward to after working so hard for nearly 40 years. Retirement. Doing nothing. He just didn’t think it would look like this. But in spite of being confined to a chair and dependent on me to make him comfortable, we love our life and still feel incredibly blessed. After an hour or two, post-coffee and sufficiently irritated at most of the news we have read, I hear the words I have been waiting for. “I think it is time to go to the bathroom”. Boom. Thank God. Who knew going to the bathroom would be such a joyful occasion. There are some days where going to the bathroom could take up to 4 separate efforts and transfers, making for a long and exhausting day. I grab his computer, remove the blanket and place the controls in his reach and we are off. Jim drives to the bedroom and positions the chair in the place that will allow me to bring in the aforementioned Hoyer Lift. Begin Phase two of our day.
Hoyer lives in the master bathroom when not in use. It probably weighs about 200 lbs and is on wheels. It is electric and keeps a charge for 2-3 weeks which is great. Hoyer can lift up to 400 lbs and manages Jim’s 185 lb frame easily. It has two long legs that are parallel to the floor and also has a lever that will open and close the legs allowing me to roll the lift on either side of his chair. First I have to lay the chair in a reclining position and grab his shorts on either side of his hips. He still has some ability to lift up, giving me a bit of help to wiggle the shorts out from under his butt so I can remove then. This is easy…wait till you hear how I get them back on! Before positioning the Hoyer, I move him into a leaning forward position using the control buttons on his chair arm. Grabbing the sling I straddle the chair, holding him forward while I slide the sling down behind his back till it touches the chair and then pull the long straps down and under each of his legs. There are 4 loops that will connect to the arm that I lower down above him with the Hoyer control. After crossing the longer loops for his legs and wrapping the upper body loops around his chest, he resembles a taco! Once the lift is lowered, I hook each loop to the corresponding locking pin. He cannot move his arms or hands at all, so I gently lift them out of the way of the crossed sling and lay them on each thigh. And we are off. Once he is totally lifted up, I pull out and use the lever to close the legs to a normal position. then I roll him into the bathroom and over the toilet, using the lever again to widen the legs to be able to get around the base. Stepping around the lift, I stand facing Jim, get into a wide squat position, grab both sides of the sling with the handles that are there to assist the caregiver and we aim to land slap dab in the middle of the toilet. This is important because we have a Bidet. This has been the best thing ever! When his business is done, he can do his own cleaning. After he lands, I remove the sling, carefully lowering the arm to just hitting his head. This gives enough slack to remove the loops….many a time I have bonked his head. Learning curves, they are around every corner. I pull the sling out of the way, hand him the remote control for the bidet and then I get out of the way. Sometimes I have Chivas lay down in the bathroom so Jim can give him the command to “Speak” when he is finished and I am alerted to return to the bathroom. While he is going to the bathroom, I take advantage of my time and throw on my workout clothes, Brush my hair, put in my contacts, and put on moisturizer if I can remember. If it is a “Longer bathroom” day, I might get a load of laundry on or the kitchen tidied up from the morning’s activities. Most days the bidet does the job, sometimes I am called in for reinforcements. Getting out of the bathroom is pretty much like going in. I always take the opportunity to give him a kiss on the head or a hug before putting him back in the chair. Sling, lift, roll, lower, undo sling, remove the sling, roll Hoyer out of the way. I have to pay particular attention to making sure the sipper tube is available to him as soon we get the sling unhooked.
The shorts. This is quite an adventure and has changed multiple times throughout the “Chair Life”. I use to be able to just pull them on the way I was pulling them off, but one day he could not lift his hips up high enough. Always Losing Something. So we had to improvise. I have a gait belt I had bought from Amazon that really never did get used because he went so quickly from being able to stand to not being able to at all. It has openings in the ends to hold onto and I had the idea to lay the gait belt in the chair where the back reaches the seat and hook each end to the Hoyer lift arm… I then lift the arm with the controls and it raises his hips up enough so that I can get on both sides and pull his shorts up! Genius! Lower Hoyer, unhook Gait, and pull that sucker out. Feeling kinda proud of my ingenuity :).
After getting Jimmy’s shorts on, we have to do a backward dive in the chair to use gravity to get his butt towards the back of the chair. I tilt him back all the way, he wiggles as much as he can to get back then I get behind his chair, put my arms underneath his back and armpits and do one giant tug, completing this task. With his hand back on the control he heads back to his room and we set up for the day. This is where you have got to know your equipment! So many machines, cords, buttons, etc. He gets in his spot and I begin the setup. He has two Trilogies ( breathing ventilators) one that lives on the back of the chair and connected to the Sipper tube that gives him breath support but allows him to still communicate, eat, etc. The second Trilogy is on a rolling stand and has a Humidifier and Accessory basket attached. that is where I keep the funnel for the humidifier, the assortment of masks, bandaids, a bandana, and a few large hair clips. I know, unusual assortment. I roll the 2Trilogy into my office and plug it in. I also plug in the 1Trilogy so that the battery does not run low. Then I bring the computer bracket for the chair and lock it into place. Jim has an Eye Gaze Edge Computer that is a blessing and a curse. You will understand if you continue to read my “Day in the life of Jim” essay. Eye Gaze lives in a moveable arm that is convenient for when he just wants to drive up to the bar and use the computer. Most of the time, we (I) mount it to his chair. Once the arm is locked in, I lift the Computer off the kitchen stand and mount it on the chair arm. Lock it in place and then plug it into the wall as well. The battery life is really short, so we try to keep it plugged in. The next event is aligning his eyes with the camera. It used to take forever but we have mainstreamed our approach and most of the time we get it on the first try. Sometimes he will slide down in his chair and his eyes will go out of the frame and we have to do the little upside-down act like we did before, getting him positioned correctly in the chair. Works like a charm.
Jim loves to read. Any and everything, but mostly things that really smart people read. The Bible, Socrates, War and Peace…you know, smart people stuff. He read like crazy before ALS and I am so grateful he is content to spend the day reading, listening to podcasts, and watching things on Youtube and the internet. He can do everything with the Eye gaze, using his eyes to communicate with the computer. This comes in really handy when your arms and hands don’t work. It will also enable him to communicate with us if he loses his voice. Something that happens to most PALS. Frownie-Face here.
I put on the mask of his choice because being on the sipper tube all day fatigues him. So we spend at least one total, collective hour a day taking one mask off and trying a different one. I have names for them. We have “Nasal Pillows”, “Pig Mask”, “Upper Lip”, “Full Face” and “Big Mouth”…Yes, they actually describe what each looks like. Day time is usually a dance between “Nasal Pillow’s”, “Upper Lip” and the Sipper Tube. After eye wipes, adjusting and cleaning glasses, positioning the computer, and affixing his mask and humidifier, I pull out the VenaFlow machine and attach it to both calves. This is new. We just got VenaFlow last week. I am really glad though. Jim’s legs and feet swell pretty badly and I have always been concerned about blood clots. This machine helps with that problem. I attach the cloth, calf sized wraps around each leg, and velcro them tight. They are connected by tubes to a small machine that then pulses air into the wraps and squeezes his legs. Jim calls them his “Leg Squeezers”. Blanket gets tucked in, mask in place, one last nose or head scratch and he is good to go. That completes phase two. But rest assured, there is always a call back for itching, mask adjustment, seat adjustment, leg-lengthening, glasses cleaning, oh, and the intermittent need for Dr. Pepper sips. I stand ready. I usually sit close by and read or piddle on Twitter, Facebook, and Fox News….looking for something to entertain or annoy me. Sometimes I take that time to go for a walk or ride my Peloton bike, but I usually wait till after lunch, or what I like to call, Phase 3.
Jim is a creature of discipline or habit and both serve him well. He always has coffee upon waking up, much like me, but lunch is a different story. It needs to be within a certain time frame and, it should be consistent. He likes the same thing almost every day. So unless there is an abundance of desired leftovers from the previous night…we go right for homemade chicken salad, chips, and a boiled egg with mustard.
I try to sit as close as possible and be in tune with his cues of needing another bite and a sip of Dr. Pepper. Lunch is usually uneventful but sometimes we have the occasional choking episode. This always scares to crap out of me! I have learned to stay calm. Assess whether he can clear the blockage on his own, if he needs a sip or if I have to get the Cough Assist machine to aid him in clearing his airway. If he needs the Cough Assist I quickly grab the mask which is attached to a small machine. I push a series of buttons and place the mask over his mouth. He breathes in and forces air out. The cough assist machine is also something that we do on occasion to exercise the lungs. Choking, unfortunately, will be something we have to deal with more and more as he loses his ability to swallow and breathe.
He enjoys watching Youtube videos and scrolling the news during lunch. He can also frequently be caught watching the Video of Sam’s MLB hits that he sent to us after the season ended last year. Sam spent just over a month in the Big Leagues and had quite a show with 7 HRs! The Rockies sent him a collective video of each of his hits…leaving out the walks and strikeouts. It is super fun to watch and in the face of Coronavirus shutdown with no baseball, it fills a tiny piece of the void. We miss baseball. Though now with Summer Camp and the shortened 60 day MLB Season has begun…perhaps our thirsts will be quenched!
Lunch is done, so I clean up and help Jim with round two of teeth brushing for the day and get him hooked back up on the mask of his choice and settled in for an afternoon of podcasts, reading, and video watching. Phase 4 of our day seamlessly accepts the early afternoon hours. Again, I stay close by unless I exercise or go for a quick lap around our neighborhood. It is really getting too hot to take those walks, though I have treasured them because for the longest time of being House Bound due to covid…getting outside was a relief! I do take each afternoon to take Chivas on his daily walk. Gotta take care of both my boys!! Sometimes in the afternoon, we do some of the other necessary grooming maintenance for Jimmy. I shave him, electric razor only, as I have nicked him a time or two trying to use the razor, clip his nails, and do the ever-present nose and ear hair grooming. The entire day is sprinkled with mask adjustments, head and nose scratches, glasses cleaning and adjusting, and a few pee breaks. Controlling the temperature is another elusive event so we make do with blankets to keep the air from blowing on Jim. We also make time each day for his physical therapy. It doesn’t take too much time because we are limited to a small range of motion. He is very stiff and his shoulders are freezing up. He can’t move his legs so I do that for him to help circulation. I have a routine. Leg lifts, pushing his leg up and into his hip, 10 times on both sides. Flex the ankles, same thing. I do a range of motion for his shoulders on both arms, then the elbow, and finally wrists. I am hoping I am doing enough. You just never know with this damned disease. I hate that it has robbed us of the Jim we know and love, but the inside is still the same. Only the outside has changed.
Phase 5 only happens every other day! It’s “Bath day” for Jim. Don’t judge! Really, he doesn’t sweat and he is constantly cold. In all honesty, the real reason we try to space it out is that taking a shower is exhausting for him. Fortunately, for now, we can still go to the bathroom and shower without the breathing machine. But eventually, we will have to figure out a solution for bathing while attached to the Trilogy. Shower time is accomplished much like the drill over going to the Bidet. First I get his fresh clothes laid out, make sure the Shower chair is in position with the wheels locked, then I get Jim ready. Clothes off, sling goes behind him and in all his glory, Hoyer and I carefully roll him to hover above the shower chair. I assume the same wide squat stance and hold onto the handles on either side of the sling. Deep squat until he is securely in place. Then I unhook the sling, remove it, and roll him to the spot where the showerhead can reach him. I leave him briefly to get all warmed from the hot water. A toss of my clothes and the race to finish both his and my shower begins so we can reverse that order and get him back in the chair where he can breathe fully again. I love our time in the shower. It is the only time I can truly be close to him. I always take advantage of that proximity to get in a good hug or two and a couple of real (on the lips) kisses! With Jim in the chair, 24/7…it is as if he is on his own island. It is very hard to even hold his hand because sitting close is just not an easy option. We have been robbed of the intimacy we use to enjoy, but we are closer than ever and I don’t think I have ever loved him more than now. Late afternoons around our house can get interesting. At least one day a week our friend Bob Ortegel comes for a weekly martini with Jim. He has been adamant that this occurs each week…and they have completed over 57 weeks in a row. We had a special celebration when they celebrated 52 weeks of martini visits! His wife, and my friend Kerre, has been coming the past few weeks and we join in the fun. Several nights a week we enjoy the company of our close friends, who never seem to tire of bringing food, cooking at our house, and joining in on the regular practice of ordering from our favorite restaurants via Favor. We are blessed with good friends and family. Visits from Blake and our grandson Charlie are sprinkled throughout these past months, as well as our son Max, Facetime calls with Kat and Sam, and a continual revolving door of our friends. So much love for the Lawrences, Veigels, Ortegels, Guions, Loverins, Kay Jordan, Gills, Craines, and Barksdales. On the nights we have no social plans, I cook our weekly selections from Hello Fresh and Jim and I hunker down to watch our favorite TV series and shows. Dinner is the 6th Phase of our ALS centric day.
Dinner is always accompanied by a wonderful selection of wine! Jim has been a collector for years and he keeps our wine inventory safely organized in a wine app on his computer. This is Jim’s important job while I cook or we entertain friends, he has to make the selection from the wine cellar and delete it from his inventory online. One of the guys visiting or I will go pull the wine from the cellar, open it and let it breathe. The one thing Jim can still do for himself is holding a special, plastic wine glass. We use a tall, stainless steel, rubber-tipped straw. I have to help him wrap his fingers around the stem and place his hands just so on his belly and he can still sip his wine on his own. The dinner part is my job. We sit close and I put on his acrylic tray that attaches to his chair. I am working on mastering the dance of giving him a bite and taking a bite for myself….sometimes I forget to eat and other times….I get carried away in my own plate and Jim is left with his mouth open! I am not perfect! Dinner and TV comprise our final part of our day, the 7th Phase. After two or three episodes of binge-watching our favorite shows we head to the bedroom to settle in for the evening. Since Jim does not feel comfortable in the bed, he pulls up next to the bed and we begin the bedtime routine. Hairbrush to scratch his head, a quick pee, another round of polishing his choppers, a well-fitted mask and he is good to go! I tuck him in all around the edges and shower his face with kisses where they can be placed. Again….I hate that I cannot curl up and sleep next to my love. Instead, I get my computer, phone, headphones, and snuggle into my side of the bed. Take advantage of the Sleep Number bed we purchased right after Jim was diagnosed and I elevate my head and feet and settle in for some News, or more Twitter and Facebook. I like to scour the internet for news on the Colorado Rockies or on Sam. I usually fall asleep this way and wake up to find everything has slid off my lap. I usually hop out of bed, check on the dog and Jim, and then really go to sleep with my rubber earbuds snuggly in place. Another quick prayer of thankfulness and requests for health and safety for all whom I love and then, eventually, I fall asleep to the Whoosh and Swoosh sounds of Jim’s slumber. I am so grateful for each day. Tomorrow will be similar and I pray we have many more days like this, but ALS will continue to spread its ugly fingers across my husband’s body, robbing him of the most basic of abilities. And robbing me of my husband. A.L.S. ALS is brutal…Always Losing Something.
August 6 update: Each week we can document some kind of change or loss. As I was reading over this yesterday, I realized we have already lost a few more abilities. Jim can not use his laptop at all anymore, so only Eye Gaze Edge. He has developed a blood clot in his left leg and is now on Eliquis ( a blood thinner) to help dissolve the blood clot. We have been given a beautiful, high end hospital bed by a sweet neighbor and we tried it out for a few hours one afternoon, but he is still more comfortable in the power Chair. We may need it soon though, so the “Bentley” stays. We also have brought on Hospice to help us deal with health issues that arise and that will hopefully keep Jim out of the hospital. In these Covid times, we definitely don’t want him to have to go to a hospital! Right now we just see a nurse once a week and they are now supplying us with all meds and supplies. Super helpful! Jim still has his wicked sense of humor and his never ending desire to be the smartest person on the planet! He is and always will be the love of my life.
October 7 Update: Always Losing Something. About a month ago, Jim began to need breath support continuously. In the past, he has been able to sustain for the duration of going to the bathroom and taking a shower….both use to be about 10-15 minutes. He can no longer go without forced air support for more than a few breaths. So now, for each trip to the bathroom, we take along Mr. Trilogy and his nasal pillow mask. Pretty easy for the toilet area, but tricky in the shower. Thank God for long hoses!
It is hard now to detect physical changes in Jim, as he has lost all use of his legs, arms, hands and even fingers. He can still drive the Power Chair, as long as I place his hand on the golf ball drive stick and make sure his elbows are in the right place on the arm rests. The Eye Gaze Edge is more and more his best friend…whom he fights with daily…more like a brother! Jim’s voice has deteriorated significantly too over the last few months. Sometimes it is barely a whisper and he is very hard to hear…other times, completely garbled and difficult to understand. We are so grateful he can still speak and we can understand him! He is still eating and enjoys good wine and bourbon…and of course, weekly Martini’s with Bob, though I am not sure he does more than hold the plastic glass, that his Martini with olives encases. It is the symbolism and the friendship that is most important. Today is actually Martini Day and number 69 ( weeks) in a row.
Sam is also home from his MLB Season as the Rockies did not make the Covid Playoffs. We are so grateful that he returned home healthy and safe! It is wonderful to have another set of hands and a warm heart around the house. We are, each of us, looking forward to the coming weeks and Sam and Kat’s upcoming wedding in December. Praying that things will stay “status quo” until then….
How does this month come around so quickly? Wasn’t it just Christmas? Could it be that it is my birthday and I have gone nearly 56 times around the sun? Or maybe because our lives changed dramatically with my husbands diagnosis of ALS, Lou Gehrigs Disease, and there is still so much work to be done. There is still no CURE for ALS and time is not on our side. Last year, “Our Tribe” was amazing. Please consider giving again this year to help find a cure for ALS!
Once again I am laying it out there that Research is desperately needed for those facing Amyotrophic Lateral Sclerosis (ALS), also commonly known as Lou Gehrig’s disease. It is devastating. It slowly kills the body’s motor neurons, paralyzing every muscle in the body until patients lose their ability to walk, talk, eat and eventually breathe. Today, there is no cure. Life expectancy is 2-5 years. In short, ALS sucks.
We want to help raise awareness and funds and we have chosen ALS Therapy Developement Institute (ALS TDI) as our Charity of Choice. Here is why.
Our family wishes to see the day when no other family has to go through this experience of battling ALS. We are committed to help raise awareness and funding for ALS research. The ALS Therapy Development Institute and its scientists actively discover and develop treatments for ALS. They are the world’s first and largest nonprofit biotech focused 100 percent on ALS research. Led by people with ALS and drug development experts, they understand the urgent need to slow and stop this disease.
We also have a new way to give back to the ALS Research Community! We have launched a T-shirt website called “Team Hilliard Threads” where we are offering a few T-shirt designs that People living with ALS can customize for their Team or fundraising event and we will donate every dollar through the month of May back to ALS TDI. You can contact us directly to upload your personally designed logo!
The strategy to fight back against ALS is simple. Find ways to slow down the progression while research can continue to advance towards either halting its progress or even reverse it.
Flying through the air? One handed push up? Nope, diving catch during Spring Training for the Rockies, March 2019. I will work on detail blog updates from January 1, 2019 to first week in April, including Jim’s surgery for a feeding (Peg) tube on April 2. Stay tuned…
SO finally….THE UPDATE!
I wanted to write an update on all things Hilliard for the first quarter of 2019 and before I had any inspiration to peck out words and feelings on WordPress, it is the middle of April.
First, I will update on Jim’s Surgery April 2. The night before, we had a lovely Hilliard family gathering for dinner. We always love the support we receive when we are there for medical trips. Thanks to Mike and Claudette for the constant assistance and company while we were in the hospital. We love you all so much! After a 5 hour wait in the admitting waiting room, we were finally placed in a room with a really sweet guy named Brian, who was also getting a Peg tube placement and has ALS. His sister Missy was with him and we began that bond that only ALS patients and families can understand.
Brian and his sister Missy.
Claudette, Jim and Mike, leaving hospital.
Hilliard Family meal!
Surgery went great, but no one informed us that this would be a two step procedure. He got the peg tube, along with about 18 inches of tube attached. Not what we were expecting! So as we manage the intricacies of cleaning and flushing the hose…after eight weeks we head back to Houston to have the low profile, Mikey Button placed. Should be super easy, outpatient and only a few minutes. Fortunately it is the same time we are scheduled to go to Houston for our quarterly ALS Clinic in June.
January: The beginning of 2019 was smooth and easy. The highlight of the month seemed to be the arrival of our Sleep Number Bed! We love our remote control dual king bed, complete with heated foot of the bed and adjustable firmness. Watching TV in bed was never more fun! The end of January meant that Sam would pack up and leave for Scottsdale, Arizona. We love having him home for the off season, and this year it was too short! He packed up his truck and drove to AZ on January 27. We already were counting the days until our visit to AZ in March!
February: We traveled to Houston for our ALS clinic visit on February 7. We always stay the night before in the Marriott Hotel, adjacent to the Houston Methodist Hospital, so that we can arrive first to line up for Clinic. Doors open at 7:30, but we have learned that it is first come first serve! We have met several friends that we continue to stay in contact with in those precious hours before the door opens! Clinic environment is very social and lots of people catching up and having coffee and lunch provided by volunteers. It is a well oiled machine, and within a few hours, we have seen every discipline needed at this time. We usually see the Neurologist, Pulmonologist, Occupational Therapist, Speech Therapist, Physical Therapist and a few others that won’t make much sense to you readers! After meeting with the Neuro Doc, she recommended that Jim go ahead and schedule for the Peg Tube Placement, since his respiratory functions had slowed a bit. So we scheduled it for April 2. They are very pro-active at Methodist ALS clinic and we have been pleased to be a part of this clinic so far. Four times a year is no big deal and the cherry on top, is a Hilliard family dinner with our Houston Peeps, each visit!
Tracy and Sam both had birthdays this month, Tracy on the 5th and Sam on the 21. We have enjoyed our visits to Blake and Tracy’s to see Charlie and he is growing and changing so much! We would have to wait until our visit in March to AZ to celebrate with Sammy.
Charlies own ball pit.
Loving Papa Jim’s Apple watch.
March: Could not come soon enough! We loaded up the car, complete with R2 D2 and enough clothes to stay 6 months! We leased a VRBO that was really close to Old Town and enjoyed nearly two weeks of MLB games and dinners with Sam. Claudette came for a full week and our friend, Don Guion also flew out for a few games. My friend Tana Herrington lives in Scottsdale and we always get together for a game or dinner out. We always enjoy our time with Tana and Brent and they introduced us to a new restaurant that will surely be a favorite going forward! Virtu Honest Craft. Simply wonderful. Tana and I spent one day going to the Botanical Gardens ( amazing cacti!) and had a lovely lunch on the patio.
Baseball of course was the main attraction, and we got to see Sam play against the Rangers, Cubs, Brewer, Angels and Giants. One highlight for me was having the privilege of meeting Steve Gleason, former New Orleans Saints Football star and now current ALS patient and warrior. He happened to be at a Chicago Cubs game vs the Colorado Rockies, and our son Sam was playing for the Rox. Since Jim’s diagnosis of ALS last year, I have met many people who have this incurable disease in various forms of progress. I have never met anyone who uses the Eye Gaze technology and is totally immobile except for his eye movement. I have followed Team Gleason for a while now and have admired his work on finding a cure and his collaboration with updating technology to help patients maintain their voice. He was recently awarded the Congressional Medal of Honor, by President Trump, the first NFL player to receive this honor. What a treat to meet Steve and his sweet family and at a game of baseball that we both love. The second photo is of Steve’s son, holding his daddy’s hand over his heart while they played the National Anthem. I am NOT crying….your crying!
Steve’s son during National Anthem.
The last week was a bit more boring for us, but not for Sam. He got to go with the Big League team for a special exhibition game in Monterrey, Mexico against the Diamondbacks for a two game series, sponsered by Major League Baseball. He said it was super fun and he got to fly on the Rockies plane and see a part of the world he had never been to. When he came home late Sunday night he came down with a bad cold and was sick for several days. We did spend our last night there having a lovely dinner at Elements with a beautiful view of Camelback Mountain and had a late Celebration for Sam’s 25th Birthday. We love our time in Arizona.
We arrived home on the 15th of March just in time for an awesome St. Patricks day meal with sweet friends! By the end of Spring Training, Sam had once again earned a promotion and was placed ont the Rockies AAA roster, The Albuquerque Isotopes. He still remains on the 40 man roster and is a call up away from his first MLB game during the season.
We enjoyed celebrating Charlies First Birthday at Blake and Tracy’s home with a lovely party with family, presents and cake. The pictures tell the story so much better! Happy Birthday Charlie!! “Being One is SO FUN!”
Happy First Birthday!
Papa Jim and Tay Tay
Precious family, Tracy, Charlie and Blake.
Fun with Flags.
Charlie in his Colorado Rockies Gear!
April: On April fools day, we made the trip to Houston to have the Peg tube placed and you already know that story.
The only other milestone we marked in April, was the one year anniversary of Radicava Infusions. Jim began the two weeks on, two weeks off rotation of daily Radicava infusions on April 15, 2018. He still drives himself to North Richland Hills each infusion day and I have discovered, he really likes flirting with the nurses! I think that might be why he doesn’t want me to go! We still really don’t know if the medicine is slowing the disease or not, so we are going to do it as long as it makes sense. Though Jim has seen some decline in function across the board, ALS still seems to be progressing slow and we are so grateful for that!
There are so many Scriptures that we hold onto, but this one is a staple.
5 Trust in the Lord with all your heart,
and do not lean on your own understanding.
6 In all your ways acknowledge him,
and he will make straight your paths.
7 Be not wise in your own eyes;
fear the Lord, and turn away from evil.
8 It will be healing to your flesh[a]
and refreshment[b] to your bones.
We LOVE OUR TRIBE! I cannot say enough about our friends and family who continue to pray for us, love on us, support us, feed us, entertain us and all around are the best tribe any one could ask for! We love you all and are especially grateful for the Lawrence’s, Veigel’s, Ortegel’s, Loveren’s, Guion’s, Barksdale’s, Bulick’s, Horton’s Harris’s, Ramsey’s Brentlinger’s, Crudup’s, Personetts, Craines, Gils, Nicholson’s, Deskin’s and Minnerly’s. Without mentioning all our family, I am sure I am leaving someone out…but if you are in our life in any way, you are appreciated.
Some fun things are coming to support awareness for ALS and the fight for a cure….May is ALS Awareness Month, and although we are VERY AWARE of it…..we want others to know how they can support us, and all of those livng with ALS, in this journey. Stay tuned!
What an amazing 2018 we have had! When the year began I had a sense of dread in my heart….we were facing the potential diagnosis of ALS (Amyotrophic Lateral Sclerosis) and I just could not wrap my mind around this upcoming year being a good one! IN spite of the awful diagnosis, we have had a wonderful year. It is not without some hard times and fearful days, but overall, blessed and beyond what we deserve! This is one of the lessons of life I continue to fail to learn!
5 Trust in the Lord with all your heart
and lean not on your own understanding;
6 in all your ways submit to him,
and he will make your paths straight.
The BIG 66!
As I look back over this year, so many good things have happened and we have met many new friends along the way. I just referred back to my earlier blogs and we have been incredibly blessed! Since I last posted in early November, we have celebrated Jim’s 66th Birthday! It was very low key with a lovely dinner with Sam and Max. Happy Birthday Jimmy….I have got to get better at this photo thing!
November 20th was the Rule 5 Draft Deadline. We waited patiently for the call from the Rockies. If they did not call….it would mean Sam was not added to the 40 man MLB Roster and would be eligible for the Draft on December 13.
Held each December, the Rule 5 Draft allows clubs without a full 40-man roster to select certain non-40-man roster players from other clubs. Clubs draft in reverse order of the standings from the previous season. Players who signed with their current club at age 18 or younger and have played professionally for at least five years are eligible to be selected, as are those who signed at 19 or older and have at least four years of professional experience.
Sam got the call around noon and we were all together for the news! He had been protected and is now on the Rockies 40 man roster. One step away from the big leagues! Article link below.
Thanksgiving was quickly around the corner and we enjoyed having 18 family members and friends over for Traditional Turducken and all the fixins! We had the Hilliard’s from Houston, Claudette, Mike and Andrea, the Hext’s from Dallas, Greg, Kim, Lila, Preston and his girlfriend Claudia. The Nickles from Allen, Lon, Tiffany, Joseph and Grace. Blake, Tracy, Baby Charlie, Sam, Max and his friend Tiffany. Friends, Gary and Linda Lawrence and Tom and Ruth Bulick stopped by for drinks after dinner. We are truly blessed with friends and family.
At long last…Graduation!
December rushed right on in and we put up our Christmas decor and front door wreath. We skimped on the outdoor lights this year, but that did not keep the Christmas spirit away from our home! Before celebrating the birth of our Savior we had to roll out the red carpet for Max! After a long road of college, no college, work, then work and college and then full time student for the past 1.5 years, Maxwell got his BA in Journalism from the University of Texas at Arlington ( My Alma Mater!). It has been along time coming and he as worked very hard. We are so proud that he went back to school after a time and got his degree. In addition, he has been a writer and editor for the College paper, The Shorthorn for the past year, getting valuable experience and building his resume. Now praying for a job that will suit him! Congrats Max!!
I love that we have at least one Christmas Tradition that has never been broken! Since the year Jim and I got engaged ( 1987) until the present, we have had Black Bean chili with Cornbread and Margaritas on Christmas Eve. We always try to attend Candlelight Christmas Eve service and then come home for Jim’s famous Chili and Margaritas, followed by opening presents. This year was blessed by our first Christmas with our grand Charlie! It was so fun playing with him and watching him enjoy the packages and opening his presents. We loved having all our kids around the table and also, Jim’s sister, brother and niece. Christmas Day was spent with my brother and sister and an elegant dinner, prepared by Kim and Greg Hext. We all had a very Merry Christmas.
New Years Eve
On December 31, New Years Eve, I woke up to my usual coffee, prayer time and commiserate computer perusing and I saw my Facebook Memory, you know the one they show you from your past Facebook posts over the years? It hit me hard as the meaning from my written words felt so much more powerful today, given the circumstances we are facing.
Here is what I wrote on Facebook Dec. 31, 2013.
“Each day is a gift, which makes each hour, each moment and each breath we take precious. Have faith, smile often, give generously and love deeply. Follow your passion and bring glory to God who gives us the gift of life. Make each day special and make a difference in 2014! Happy and Healthy New Year to my family and friends near and far. “
As I read this, it occurs to me just how MUCH more I feel these things today, knowing the deep and true meaning of the words that came to me back then. I plan to take my 2013 advice and do just that! I hope you do too. May each day of 2019 bring moments, hours and days of special memories and may God smile upon us as we try to honor Him in through the tears and laughter to come. Happy New Year. 💜