Earlier this week, Jennifer and I returned from our sixth appointment to Texas Neurology related to my participation in the Healey ALS Platform Trial. For this trip, we opted first to travel to Orlando for a brief visit with my kids and grandsons.
Due to some illness in the family, some of our get-together events were cancelled. Nevertheless I was able to spend private quality time with each of my kids and grandsons. The weather was chilly and included the coldest day on record in Orlando the last five years.
A new challenge: muscle spasms
Over the last six to seven weeks, I have been experiencing severe bouts of late-night leg spasms that have significantly crippled my ability to have a good night’s sleep. The spasms, which are related directly to my ALS diagnosis, typically start in the evening when I’m in bed and when sleep is just around the corner. These episodes typically start on one leg with each spasm or cramp lasting about 5 to 10 seconds, and the whole episode lasting anywhere from one to two hours.
When the spasm subsides on one leg, it jumps over to the other leg and we restart the full experience again. Fun times for sure! These spasms have ranged from an inconvenience to severely painful, and in all cases they interrupt my sleep. Jennifer and I have tried almost everything, including heating pads, compression leg sleeves, pickle juice, mustard, apple cider vinegar, CBD/THC products, and numerous other remedies recommended by my care team.
During our flight from Hawai‘i to Orlando (a direct flight of nine hours), the spasms started one hour into the flight and did not subside until one hour before landing. Not a good way to start our trip.
Wonder woman to my rescue
During our stay at the hotel in Orlando, the spasm episodes continued. I often get up from bed and try to walk out the spasm, which tends to alleviate the episode somewhat. One of the evenings in Orlando, I got up from bed around 2:30 a.m. to walk out a spasm episode when I lost my balance and took a bad fall, hitting my head on the kitchenette floor. You can only imagine how startled Jennifer was to be awaken by my fall and sounds of agony.
After assessing that I was not injured enough for a 911 call, we went into planning to get me up from the floor. Jennifer maintained a cool head on her shoulders as we developed a plan to gradually get me turned around from my face plant, to sitting upright on the floor, to using a stepstool to get on top of an ottoman to transfer to a seated position on the sofa, which then allowed me to stand using my walker, and eventually to walk me back to bed.
Besides a little bit of blood on the floor and a bruised head (and bruised ego), I was fine. The hero in the story, is my wife Jennifer, who I call my wonder woman. She used her smarts and strength and patience to make sure I was able to safely get off the floor. I don’t know what I done without her.
By the way, I am almost completely dependent on my wonder woman for many daily routine things that I used to be able to do on my own, including getting dressed and undressed, getting up from chairs and sofas, getting in and out of the shower, and cutting my food, among other things.
Fight club with Dr. Nasri
After a few days in Orlando, we took the short flight to Dallas for our sixth appointment at Texas Neurology. The clinical research manager, Dr. Nasri, and I have gotten to calling these appointments our own version of fight club. The four hour-long appointment included 10 vials of blood drawn, a speech vitals test, a series of questionnaires, and what feels like a 10-round physical fight.
Physical measurements to determine muscle weakness are the highlight of our friendly sparring fight. Almost every muscle group is put to the test, including my feet, knees, legs, arms, hands, neck, and back. We both come out of this friendly fight exhausted.
During this visit, I also had the chance to visit with Dr. Heitzman, a distinguished neurologist who serves as the site investigator at Texas Neurology for the Healey trial and directs the ALS / Motor Neuron Disorder Clinic. We discussed my case and progression, and alternative treatments once my participation in the Healey trial wraps up at the end of March.
My experience with Texas Neurology has been nothing short of exceptional. The doctors and staff are absolutely great.
Jennifer and I have a tradition of enjoying brunch after each of these appointments. On this trip we found another new spot, Snooze, that had a wonderful selection brunch items.
Back home in Honolulu
Our return trip to Honolulu also marked my first experience with an aisle wheel chair. Since we began our travel in mid-2021, I’ve utilized wheelchair assistance to and from the main airport to our gate and down the jetway for boarding and de-planing. The aisle wheelchair is skinny enough to wheel me down the aisle of the plane to my seat, but requires assistance to be transferred into and out of it when getting on and off of the plane.
Once we were home, I was able to have a personal visit with my neurologist here in Hawai‘i, Dr. Vivian Chin, the Medical Director of Neuroscience Ambulatory Services at Queen’s Medical Center. She has been wonderfully supportive of my participation in clinical trials and embodies a refreshingly patient-centered approach to medicine.
We recognize that my ALS is progressing, albeit at a slow rate.
My left arm is practically useless as I’m unable to grasp and hold items with my left hand. I also have ongoing muscle pain in my upper left arm. My right arm continues to gradually weaken day by day, limiting my ability to hold items, and to type effectively.
I am now using voice to text software almost exclusively 100% of the time. This entire blog entry was written using the voice to text software, Dragon.
My legs continue to be somewhat strong, although I am using a walker 100% of the time. I am using a power wheelchair at work to help me move around effectively and with as little energy expenditure as possible. We are working on securing a permanent power wheelchair for my use at home.
My ALS diagnosis has yet to impact my ability to swallow or speak. However, we are beginning the process of speaking to doctors about surgically implanting a feeding tube when needed.
While most days are hard, I continue to have my typical positive outlook on life. I am fortunate to be surrounded by loving family, friends, and colleagues.
Our next and final trip to Texas Neurology for the Healey trial is scheduled for late March of 2022.
Jose, I’ve been following your progress with your very informative (and graphic!) emails, and I’m totally committed to helping however I can. However (Aren’t there always “however” in times like these????!!) my physicianhas forbidden me from going anywhere (and she means ANYWHERE!)where there might be several people with whom I haven’t come into contact within the past month or so. Therefore I’m stuck at home, and have pretty much withdrawn into a physical shell except for doctors’ appointments. THANK HEAVENS FOR ZOOM!!!! It enables me to attend board meetings, group chats with my children and grandchildren.and “like that”.THANK HEAVENS FOR JENNIFER!!!!!
Aloha Josē and Jennifer,
Thanks very much for the update, giving us details of your “migration” to FL, TX and back home again. Josē, you are a very courageous person to join in trials looking for treatments for ALS; your decision is of great benefit to humankind; thank you!
It is also very courageous and generous of you to share the details of how the disease affects you; that is so instructive for us. For me, it is also helping me understand what my neighbor, also hit by ALS, is going through.
You go for walks with me, as I keep you in my thoughts;
Oh!…I forgot to say how much I agree with you on the importance of having a good brunch on occasion. I’ve recently started to treat myself to an (actually, early morning) breakfast treat at the relatively new Kalapawai in Waimānalo. I usually ride my bike over about 7 am, and then I can have a nice biscuit Breakfast Slider and coffee on the small outside lanai, with hardly anybody else there. https://www.yelp.com/biz/kalapawai-cafe-and-deli-waimanalo-waimanalo-3
Thank you for sharing your time and journeys. I continue to pray for you two daily.
Mahalo for taking time to keep us in the loop with your ongoing journey. I’m fascinated by Dragon’s ability to help you communicate and hope that it’s not too frustrating. (All I can think about is how I end up cursing Siri when she can’t understand me) Jen truly is Wonderwoman and you are Superman. You are in my constant thoughts.
Thanks for the update, if there’s any way we can be supportive and help, please call or email. Love to you both, colleen
Just a note to José and Jennifer: thank you for including us in your process and challenges. Your strength and positive outlook have been and continue to be such a great inspiration.
You are both amazing. We continue to think of you and wish you strength and small joys every day. Much aloha, Suzanne
Thanks for the update…. Continued prayers🙏🏼to you and your family.
Jose, I admire your strength and courage. You and Jennifer are an inspiration to us all. Hang in there and keep the faith!
Love you! 🙏🏻💜
Thinking of you and Wonder Woman as you both navigate through these challenging times. ❤️
I am simply amazed by your courage and determination. You and Jennifer are giving true love a whole new meaning and those wedding vows you took on that beautiful beach such a powerful gift to each other. Your messages continue to lift me up with a renewed hope and a deeper faith in a power greater than any of us can imagine to face life’s challenges. Gracias amigo for sharing your journey which serves to remind us of the greatest gift of all – LOVE. Happy Valentine’s Day! Lou♥️🙏🏼
Nick and Jamie Turco
I’m glad you got to visit with your Orlando family, friend! Thank you for keeping us updated and sharing your lives with us. We love you. L
We always keep you in prayer.
My whole family is praying for you, including my parents. Your strength and grace continue to inspire. Sending hugs.
Always and forever Love you my brother
Very proud of your positive energy, Josean, despite the pain and challenges. Thank you, Jennifer, for taking such loving care of my brother.
Jose, I so appreciate you sharing your journey with us. I imagine what you are experiencing is tough and taxing, but your positive outlook surely helps you and Jennifer through the days. You are strong and courageously staring this disease down. Keep fighting the good fight!
Sending you love, my friend. You are a miracle, and always have been.
I am so glad you were able to visit your ‘ohana on your way to Texas. Your positive attitude and strength is an inspiration. Thank you for sharing your journey.
Shizuko & David Hartness
David and I are amazed and inspired by the two of you and your daily battle with your ALS challenges. We love you both with all our hearts and remember you in our thoughts each and every day. Aloha nui loa.
Jose / Jennifer
Thanks for letting us journey with you, at least virtually! Hugs & prayers for you both….john c
Jose..I am four thousand miles away from you but I hope you can feel the power of my prayer. I wish I was closer, so that I could do more to support you. Keep fighting.
Kirsten Vangsness Recce
Have you tried Himelayan Pink Salt. I carry a grinder when I am doing Keto and traveling. Pickle juice is so hard to travel with!
Knowing three friends who have gone down this path, I know you value your voice and ability to communicate. My prayers are with your entire family.
I don’t think San Diego is a stopping point on the way to Dallas. But am always willing to help in any way. I won’t be back in Dallas until June, but I would love to treat you to brunch when you go back in March!
Jose & Jennifer, You are such an inspiration. On this Valentine’s Day, Thank you for showing us
what Love & Commitment look like. Blessings to you on this challenging journey you share.
Jose, I am so inspired and blown away by your positive attitude and strength within. I saw it before and now it’s even more striking. My prayers are with you and your wonderful family. You are such role models for Love in Action.
José ~ I just wanted you to know that I have been following your journey and am so inspired by your ebullient spirit, courage and positivity as you face these daunting challenges. Thank you for sharing your story with all of us. You are both in my thoughts daily. Imua! 💕