April and May were busy with planning our Radicava medication schedule and preparing for a 2.5 day evaluation with a new team of Doctors at Houston Methodist. Dr. Appel and the ALS Team Hope were on our agenda for May 22-24. We drove down to Houston on Monday evening and had a lovely dinner with family. We reported to the Neurology department at 7am on May 22, ready for our two and a half day evaluation. It is all done outpatient, but over the course of three days, Jim had another EMG test and a nerve conduction test. He was seen by a Psychologist, Occupational Therapist, and Physical Therapist. He also was seen by a Pulmonologist Tech who tested his lung function. Then Dr. Appel and his team made rounds. Dr. Appel did his assessment of Jim and we were amazed that an 85 year old man could have such spunk and strength! He was truly impressive. But what impressed us most, was his love of what he does, his zeal for research and dedication to helping those who are living with ALS.
Tuesday night Jim had a date with the overnight sleep lab. The Clinic at Houston Methodist are firm believers in strengthening the lungs from the beginning to help deter the weakening of the diaphragm muscles. Before reporting to the Sleep Lab, we enjoyed another meal out that night with Jim’s brother Mike and sister Claudette. Mike just recently finished an aggressive round of Chemo and Radiation for Throat Cancer and is doing very well!
Dinner at Bengi’s, Houston.
Jim woke up early after the sleep lab and Wednesdays agenda was full as he was scheduled for more tests and evaluations and a twist of scheduling Jim for a lumbar puncture ( an out patient procedure to test spinal fluid). We would head back to the adjacent Marriott hotel where we were staying because Jim had to lay flat for 12 hours after the Spinal tap to try to avoid side affects of headache. We enjoyed in room dining and a good nights rest!
In the hospital just before Jim’s Spinal Tap.
Our last day was filled with follow ups from the entire team. We met the infamous Dr. Holland, a Pulmonologist who believes early intervention in strengthening the diaphragm muscles is key to prolonging disease progression. We received prescriptions for new medicine and a leg orthotic that will help keep his right leg muscles strong. Just in the last month Jim has been having to work harder at picking up his right foot, so perfect timing! They said wearing the brace will keep the muscles from weakening as fast. Per Dr. Holland, Jim is also being fitted for a night time breathing machine called an AVAP. It will help keep the diaphram strong and functioning and also a cough assist machine. All these things are working toward fighting off the muscle weakness. We were visited by a rep from MDA and ALSA, both associations that assist with care and needs of people with ALS. We were given our assignment to come back to the Houston ALS clinic in October. We will make this trip once every four months to visit the one day, comprehensive Clinic. In the mean time, we have a notebook full of information and a business card for every clinician, therapist, nurse and doctor if our needs change before Oct. More than anything, we have a plan.
In the middle of all this was our #teamhilliard fundraising campaign we launched to bring awareness to ALS. May is ALS Awareness month and we decided to get involved and get behind ALS Therapy Development Institute in Cambridge, MA. They are the only non-profit, Bio-Tech company to research solely for ALS. We set our goal of 25, 000 and because of so many generous friends and family we reset our goal to 50,000! As of this writing we have raised over 42,000 $ for ALS TDI! THANK YOU SO VERY MUCH if you participated with us in this journey! Team Hilliard will continue to fight for a cure, long after the month of May is over. We will fight til a cure is discovered. Click on link to see our ALS Research Fund Page for Team Hilliard.
The last six months have been a whirlwind of emotions. the thing we most desired is to have hope and a plan for fighting ALS. We found that in Houston. Two and a half days was a big commitment and subjecting Jim to more poking and prodding was a pain, but we both feel it was worth it! Please continue to pray for healing, for strength for Jim and our family and for the researchers working so hard to find a cure!