this is what happended

I started having noticeable symptoms in May 2014. Out of nowhere, I suddenly started experiencing problems with speaking. On certain words, it was as if my tongue would glitch. At first I assumed it was stress. Then I thought it might be an allergy, as some of the symptoms mimicked allergies that I sometimes had in the spring and fall. It would come and go and eventually went away altogether so I didn't think much of it. 

The following November, it started again. This time accompanied by a hoarseness in my vocal chords. I remember being with my sibs Mark & Betsy at Thanksgiving and we all were singing Beatles tunes and I was really struggling to stay in pitch, something that I never had trouble with before. Still, I wasn’t alarmed, and it went away, again.

A few months later in January 2015, I was recovering from rotator cuff (shoulder) surgery and the symptoms suddenly became much more acute, more persistent. I began having trouble with chewing and sometimes had choking episodes. This was new and very scary. The symptoms would last for days then disappear, only to reappear again a few days or weeks later.  What made it all the more confusing as the symptoms were similar to the side effects from pain meds I was taking at that time for my shoulder. So, initially I thought it was the meds. But once I was done with them, and my shoulder straightened out, the symptoms with my voice remained and continued to worsen. In March, I sought out a speech therapist who urged me to see a neurologist. Right away. So I did. By mid-April my voice was almost an unintelligible garble and my body started to do weird things: feeling rubbery, loss of balance, dizzy, intense fatigue. Very scary. 

At first I assumed it was Parkinson's, as two of my cousins have it, but the neurologists ruled that out. After some testing, I received a preliminary diagnosis of motor neuron disease (MND) in April 2015. That's it. I'm done for. But my local neurologist thought there was a possibility that it might be something called Myasthenia Gravis, as some of the symptoms he was seeing didn’t add up. The symptoms between MND and myasthenia gravis are so similar and both are difficult to diagnose. Luckily, MG is treatable and I responded well to the meds for a few months. So well, that while I still felt lousy and rubbery, my voice got much better and we were able to travel to the UK and France in June and I planted a huge garden and continued to live fully, and felt strong. So at that point I thought I'm going to be ok. I started doing yoga, exercising, and riding my bike religiously. 

But as the summer progressed, I stated to experience weakness in my body. In early July I had these little indications that something was drastically wrong. I recall dragging a small kayak out of the water, something I had done countless times before, but this time it felt as if I was pulling a huge ship. My voice slid back into garble and most distressingly, I was having difficulty in playing guitar. This was devastating. I had severe weakness in my pinky and ring fingers and difficulty in gripping a pick. I'd exercise them, do scales, anything I could think of to try stay ahead of the symptoms. Despite this, I continued to ride my bike, swim, and do everything I like to do and stay active, although I could no longer deny that there was a compromise in nearly everything I'd did and after I'd expended myself, it would leave me exhausted and I'd collapse, having to rest for long periods. Yet, I was determined to fight it, keep hitting back, and live every day like it was my last. In some ways, I had never felt more alive at that time because I just had this feeling that something was closing in, hovering over me.

By September, despite my attempts using yoga, exercising, medications etc. I had to admit to myself that I had dramatically declined. There was no question now that my strength and abilities were not improving. For example, opening a lid on a jar was suddenly a difficult procedure whereas a few months before, I'd whip it off without thinking twice. Holding a pen proved challenging. Eating had become a potentially hazardous endeavor and had to be done carefully and slowly to prevent choking. Cutting our wee lawn would take an hour whereas before it used to take 20 minutes. I had to give up riding my bike due to the fact that my leg strength had seriously waned. In fact, walking became difficult and I developed a limp. I spent a good part of October in a recliner.

In early November 2015,  I went in for new round of testing. This is when I received a new diagnosis of ALS. It  wasn't entirely a surprise, as the likelihood of it had been hanging over my head since April, but still, hearing it being spoken by your doctor is surreal. And sickening. I'm still partly in shock. I think I’m going to wake up, and I’ll be normal again. But after having a six months to chew on it, I’m a little closer to accepting it. But some days, I’m seriously not. 

At first, I had the attitude: “damn it, we’re gonna fight this!”, and I was researching just about anything no matter how crazy or far-fetched as far as treatment options. But really, and this may sound defeatist, as far as I can see there’s just nothing out there right now. (I think they are decades away from a cure, hell, they don’t know what even causes it although different theories abound, all unproven). As time as has passed and observing the changes in my body I have to say; I’m really humbled by this disease. And while I do take many proactive steps (supplements, yoga, massage, lite exercise, etc), there’s just no stopping it. It just keeps on rolling along. 

The biggest challenge I’m dealing with is being a father of a 11-year-old child. My thinking is (right or wrong) if he were older, more formed, in college, etc. I think I would feel more secure about dying and his dealing with the repercussions. We held off telling Gavin until late January. I was hesitant for fear of traumatizing him. It was the most difficult thing I’ve ever done. The first 10 minutes were excruciating. Many tears. Then, it lightened up. Somehow, we survived. Emma had to do all the talking (as now my voice is about 100% gone), forcing me to write notes. His spirit is so strong and positive (go figure, him having a melancholic father!). Kids seem to live in the moment and compartmentalize. A Blessing. He’s level-headed, he’s resilient. But I do worry about the future. 

Emma is suddenly thrust into the role of caretaker, which she’s handling brilliantly on top of now being the sole breadwinner of a incredibly demanding and sometimes frustrating job. Luckily, she’s much more into living in the day or the moment, while I'm a month in the future, a year back in time and all places in between. Amazing, she still has a great sense of humor, in fact we all do despite this shitty, f’d-up, unfair situation. We all still laugh and have fun, and despite my mobility issues we went to the Bahamas in March and had an incredible time. My sister Betsy has been incredibly supportive, coming out several times just to hang out and help and networking through Facebook to raise ALS awareness and $. My brother Mark, I think is having difficulty dealing with it. He's well aware of it but hasnt come around to being able to talk about it. At least to me. I never told my Mother. (whom just passed away recently) She knew something was wrong with my voice, but I never elaborated on what was the cause. I just couldn’t bring myself to do it. As a parent, I know when something is wrong with your child, you suffer deeply and you feel that you have should've done something to have prevented it, no matter how illogical that seems. I didn’t want her to have to go through that. 

Currently, I’m continuing to decline which is ‘normal’ as it’s a progressive illness. I notice small changes week to week, loss of ability, less strength. For example, a month or so ago I was still able to cook without too much difficulty. Now, Its nearly impossible to prepare a meal. Even a simple one is hard. I leave a huge mess behind, drop things, and the difficulty I experience standing for any length of time makes it not really pleasurable. (I used to be the family shopper, cook, etc).

My breathing has improved slightly due to a BiPAP machine I use at night so I’m more rested when I get up.

 I held off telling people because I didn’t want to upset them and also because of my pride; I didn’t want to be thought of as a ‘tragic’ person. And frankly, it was kind of a bother telling people too. Now, I don’t care, no time to worry about peoples reactions. It’s none of my business anyway. I just got a bad hand dealt, that’s all and the last 11 years of my life have been perfect.