Tuesday, April 26, 2022

Some Answers Come In Mysterious Ways


My husband passed away on June 8, 2021 at the age of 76.  His sudden death was a surprise to us even though he was living with a little known or understood genetic disease.  People would ask his cause of death, and I had to be very vague.  It wasn't because I didn't want to talk about it, but it was because we really didn't know until recently.  Comedian Gilbert Godfrey died on April 12, 2022.  His cause of death was heart failure as a result of Myotonic Dystrophy.  Through the media reports and facts about the disease posted by his family, we have learned more about what most likely happened to my husband Mike. 

Let me start from the beginning.  Several years ago my husband's brother was having some muscle and swallowing difficulties.  He went to several doctors and was finally diagnosed with a disease called Myotonic Dystrophy.  It is an inherited disease that affects the muscles.  There are two types.  Type 1 usually appears in the early years of life and is very debilitating.  Type 2 doesn't appear until middle adulthood.  The symptoms are so subtle that it doesn't always cause obvious problems for a long time.  My husband was so strong and capable it didn't occur to us that having cataracts at age 50 was anything out of the ordinary.  Most doctors know nothing about this disease and most have never even heard of it.  Years went by before his brother found out his diagnoses and alerted my husband to the problem.  Being in denial, we felt terrible for his brother, but since inheriting it was a 50/50 chance, we assumed that he was fine.  He was fine for many years and then gradually he began having some difficulty saying some words and swallowing certain foods.  He checked out healthy for his wellness checkups so there were no red flags.  Then about three years ago he was having soreness in his shoulder and was sent to physical therapy.  He told the therapist that he probably over did the exercise because he was having discomfort near his upper chest.  They told him that wouldn't be where he would feel pain and to go directly to the doctor.  He found out that day that he had A-fib or Atrial Fibrillation.  We were just about to go on vacation but the doctor assured us it would be fine.  He was given medication, and we were told to monitor his heart rate and blood pressure.  I have to say we were a bit obsessed with doing that because this was the first time heart issues were ever mentioned.  We were on vacation with my sister and brother in law.  I am sure we were not much fun on that trip with this new diagnosis in our minds.  When we returned home from our trip, we had the first appointment with a cardiologist.  His first words were "why do you talk like that".  We explained the Myotonic diagnosis and that it sometimes affects speech.  The doctor pretty much ignored that and said his Afib was probably caused from sleep apnea.  He ordered a sleep study and sure enough that is what he had.  We got set up with a  CPAP machine and all was well.  Mike hated the machine and had a hard time finding a proper mask, but he used it religiously every night.  He checked out good with the heart doctor and only needed to see him every year.  That was until last spring, about a year ago.  He had a routine echocardiogram and it found he had some numbers that weren't great.  It was suggested he get more tests and possibly a pacemaker.  They said the lower chambers in his heart weren't beating in unison.  We were set up for further testing, but before that appointment could even happen his heart rate started being erratic and we went to the ER.  He spent the next 12 days having tests and procedures.   He was written off by almost every doctor he saw.  They passed the buck from one to the other.  No one could give us good answers and not one knew anything about Myotonic Dystrophy except what they read on the internet.  After 12 days of getting nowhere we just wanted to go home.  A few days later he suddenly and peacefully died.  At the time we didn't really know what happened, he just went to sleep.

Now back to the Gilbert Godfried story.   Shortly after his death we received a text from someone about Gilbert's cause of death.  It was from ventricular tachycardia, a result of his long illness with Myotonic Dystrophy.  Included with the death notice was information that we had never heard or seen before.  It stated that this Myotonic Dystrophy disease can present itself in many forms depending what muscles are affected.  It can be legs and arms, eyes, breathing, swallowing, vocal cords or the heart.  It said death can be sudden from a fatal drop in blood pressure. Ventricular tachycardia is a rapid heartbeat preventing the heart from pumping enough blood into the body.  If this lasts too long it can cause the heart to stop beating.  That is exactly what happened, my husband's heart just stopped beating. 

Gilbert Godfried's family has requested donations be made to the University of Rochester for Myotonic Research.   They are doing research and gathering information.  I could never have imagined that the death of a well known personality would answer some of our questions.  Hopefully awareness and research can bring successful treatments and early diagnosis to peoples lives so they can live healthy productive lives.  One of the neurologists we saw said, "this disease won't kill you but problems created  from it could".  He was so right.