Featured ALS Story - John Gullage
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John Gullage has been a friend of Harpoon 5-Miler for years. Now, his daughter Kelly Giusti shares the story of her father's ALS diagnosis last year and the irregular form it took...

 

In July of 2018, my Dad, John Gullage was diagnosed with ALS. He is the stoic father of 5 children, and is known as “Papa” to nine. For my whole life I have been in awe of his work ethic, which he always tried to instill in his children. Though he worked insane hours, he also played hard too.  Family is of the utmost importance to him, and he was also super social; we could not go anywhere without running into someone he knew. He was always there for family and friends in need; a “day off” was usually not really a “day off”. My dad was always prepared for all of life’s twists and turns, but suddenly he was in the midst of a twist that we never saw in our future.  This diagnosis was extremely difficult for the doctors to make, due to the unfortunate rapid progression, and unique presentation, making it that much harder for our family.

My dad retired from the Massachusetts State Police as a motorcycle officer after 40 years of service in October of 2017. His station was close to the Harpoon Brewery, which is how he originally became connected with this event.  He first started stopping by the brewery following work to pick up growlers, but then soon made friends in the company, and volunteered his time doing security on race days. He loved helping out at the Harpoon 5-miler, which we now find very ironic given that it supports ALS.

My father was looking forward to an active retirement filled with travel to warmer locations, long rides on his Harley, as well as more time with friends and family. At the end of his career, as he was preparing for his next stage in life, my Dad began to have back pain and leg weakness.  He went to doctors and was told that he had slipped discs, and pain and weakness due to nerve compression.  He was in a great deal of pain, but never complained and continued to work. While this was going on, the family also noticed that Dad was beginning to be much more forgetful, and appeared to be having memory issues.  Doctors attributed this to stress, lack of sleep, and depression over the recent loss of his wife. We just knew he really just did not look like himself.  After his retirement, he was scheduled for a back surgery that we hoped would bring him back to “normal”. But after the surgery, he actually just looked worse, and needed daily support to function, and the use of a walker to move around. Over the next few months, he had a number of strange symptoms such as low sodium and increased breathing issues.  He was using his inhaler constantly, but again doctors connected this to his lifelong asthma. He went through every test and scan, and saw numerous specialists, but they found nothing.  It was completely unfathomable to see this frail, and confused man, who always appeared unbreakable just only about 6 short months after he retired. It was not until his primary care doctor pushed for him to have an EMG study that we had some answers.  His nerves were shot, but it was too late.

On June 28, 2018, just 2 days after this test, he was rushed to the hospital.  He could barely utter a sentence, his jaw was dropping, and he appeared like he had a stroke.  Within hours of his arrival at the emergency room, he was practically catatonic, his CO2 levels were through the roof, and he was intubated.  His lungs were not functioning properly and were collapsed.  The next few hours were a nightmare; we did not think he was going to make it through the night. He actually coded and required 60 seconds of chest compressions to be revived.  He was heavily medicated and out for the next 5 days, while the doctors continued to search for answers. On July 5, his 67th birthday, once conscientious, my father was delivered the diagnosis.  It took a team of doctors to come to this conclusion, and an outside consultation from a renowned ALS expert to get to this point.  His case presented so differently and moved so quickly, he had medical professionals scratching their heads.  Though this was a painful diagnosis, we felt relieved to finally have an answer. My father immediately had to choose whether he would elect a tracheostomy or just give up, as his lungs would no longer function without ventilator support.  Most ALS patients experience a gradual decline, and may have months to come to terms with this diagnosis; they have time to make decisions regarding their quality of life.  Unfortunately, my father had days. 

What is important to take away from my father’s story is that every ALS patient’s story is different and the presentation of his or her disease may be different. Many do not have their lung function decline at a faster rate than their limbs. Many ALS patients are cognitively unaffected, however my father has short-term memory deficits. It is important that families become strong advocates, and push for tests and supports.  My father has had family at his side, and in the doctor’s faces, since he was hospitalized to make sure he was receiving the best of care and helping them understand who he really is.   

My whole life I looked at my dad as invincible; it is inconceivable that this is his final chapter. I never thought in a million years that the man that caught me at the end of the Boston Marathon would now need my help, when it was finally supposed to be his time. Although, he still is just as positive and social, and thankfully due to his cognitive issues, does not really understand what lies ahead.  His retirement plans are nonexistent, but he is surrounded by family daily and making the best of it.  We are helping him to have the best quality of life as possible with the time he has left. He can still hang out with the ones he loves, watch a Red Sox game, and enjoy a beer! We are looking forward to attending the Harpoon 5-miler alongside our Dad, as he loved being a part of this amazing event, and now personally realize just how important this cause really is.  

 

Kelly Giusti

 

To donate to Kelly's 2019 Fundraising efforts, visit her fundraising page here. 

 

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