Paul McNair, diagnosed in November 2015 at age 55.
Died January 17, 2017.
A little over a year ago, I was a very active 54-year-old guy with a wife, kid, a mortgage and I was finally feeling like my life was fitting around me like a well-cut suit. I lost the intolerable corporate job I’d had for the last ten years, and became the house husband, the cook, the shopper, the handyman. An accomplished carpenter, I continued to renovate our house. I built a project recording studio and got back into writing songs, started a band, joined a local theater company and started acting again. I built raised planting beds and grew vegetables, built a woodworking studio, coached little league, and—most importantly—was fully present for my son. I made him breakfast and lunch and walked him to school. This was the highlight of it all. Previously, I was commuting. I’d leave in the early morning and return at dinner time. But now with that behind me, I was free to explore the “all the time” we suddenly had together. It was a good life. Hell, it still is, only now with the caveat that I have ALS.
I started having noticeable symptoms in May 2014. It started with my voice. 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 siblings at Thanksgiving, and when we were singing Beatles tunes as we traditionally do when we get together, 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 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 was the symptoms were similar to the side effects from pain medication 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 2015 my voice was almost an unintelligible garble and my body started to do weird things: feeling rubbery, loss of balance, dizzy, intense fatigue. It was all becoming very scary.
At first I assumed it was Parkinson’s, as two of my cousins have it, but the neurologists ruled that out. After an EMG test, I received a preliminary diagnosis of motor neuron disease (MND) in April 2015. That’s it. I’m done for. But my neurologist thought there was a possibility that it might be 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. 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 started 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 playing guitar. I’m an accomplished guitarist, and have been playing for over 40 years, so 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 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 tiny 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 drop foot. 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 definitive 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 six months to chew on it, I’m a little closer to accepting it. But there are certain days when I’m not anywhere near to accepting it.
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. Stem cell injections in Taiwan: no problem! But I’ve come to terms, and this may sound defeatist, as far as I can see there’s just nothing out there right now. (I think they are years away from a cure, hell, they don’t know what even causes it although different theories abound, all unproven). As time 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 (Deanna Protocol, yoga, massage, lite exercise, etc), in my experience, 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 him 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. My wife 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. He’s level-headed, he’s resilient. But I do worry about the future.
My wife 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 lousy, 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.
Currently, I’m continuing to decline which I guess is ‘normal’ as it’s a progressive illness. I notice small changes week to week, loss of ability, less strength, compromised breathing. This week, the PEG tube went in. I’m in the process of adjusting to that. A tube hanging out my stomach is a new and different experience, to say the least. A month or so ago I was still able to cook without too much difficulty. Now, it’s 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 at the stove for any length of time makes it not really pleasurable. I’m not not yet in a wheelchair, but I use a rollator to get around. I can see that the power chair is right around the corner. I’m grateful such a thing exists. To quote my father: “it’s the right tool for the right job”.
I’m not sure what the future will bring. Will I continue to progress? Will the progression taper off? How much time is left? These are unanswerable questions. The best medicine is to live in the day, and that day only. That way, I’ve learned to appreciate a single good day. I’ve learned to appreciate when my throat will cooperate and I can enjoy some of my favorite food. To appreciate sitting outside in the sun, listening to the birds, listening to the sounds of my child. I still experience joy and laughter at times, and I’m grateful for that. Very grateful.
I just read your piece carefully. I will be reading this over more than once. If you don’t mind I might share it on my fb page – there is so little information out there about ALS.
I hope you will continue writing as this is an excellent piece, and this piece, and other like it would give hope and inspiration to any person who is facing grave illness. Your soul is in your writing, and your anguish and your hope too. You remain a force in the world with the power to move.
Jay
Perfect article, perfect timing. Exertly said. Husband diagnosed 4/013, very close friend diagnosed this week. WE are in this together, sad as it sounds, but championing on! (is that a word?)
Paul…I am so saddened to hear this has happened to you. (I know you from S.S.)
I just watched a fantastic documentary on Netflix made by a young man , a filmmaker, who contracted als. It was sad but heartwarming and hopeful too.
He eventually went into a special clinic in Boston for als patients .He met others like himself and got the services he needed. See if you can get a hold of the film I think you’ll get something out of it. Lots of love to you. Jean
Your story is our, but in France. My husband Eric was diagnosed in september 2014. He loved to sing, play theater and was totally involved in is job. Today, we try to take advantage each day. even if it is difficult to see him in prison in his own body. Love is our fuel. Take care and keep believe in love !
Paul,
Thank you for this beautiful, real sharing of your journey. You touch so many with your words, and it is helpful to hear how your diagnosis came about and how are are doing now. You are such a gift. Your authenticity, your vunerability, your humanity. You remind me what’s important, and I am so glad to know you. Please keep sharing, we want to know, the good, bad, and the ugly, all of it.
I imagine dealing with others’ reactions might be one of the hard Oates of all this, and I’m sure you get inundated with suggestions of alternative treatments and “there’s this clinic/Doctor/herb, etc.” from well-meaning friends, and I’m know from personal experience that it’s draining and fraught sifting through the myriad dead ends, but I’ll throw in my current curiousity, if I may, which is CD.
Chlorine Dioxide, is an anti-viral, anti-bacterial, anti-microbial, anti-fungal, chemical treatment that is added to municipal drinking water supplies to napalm a wide range of disease-causing pathogens, and there is a fringe movement that has sprung up that’s using it in a protocol (a few drops diluted in water scheduled throughout the day in increasing doses) to treat things like Lyme, Autism, Chronic Fatigue, MS, Parkinson’s, and I believe some are using it for ALS. My sister tried it for her son’s Tourette’s and it had no real positive impact, but many, including me, have used it for chronic Lyme and had positive results. There are supposedly a couple hundred documented cases of cured autism.
I am always skeptical of cure-all fads, really, but I also try to remain open to the possibility that our medical and pharma model is still missing big pieces of the puzzle and real help may actually come from one of these grassroots movements of people who take matters into their own hands and experiment on their own when it comes to diseases traditional medicine hasn’t figured out yet, particularly ones that typically end in death. My niece’s battle with Crohn’s has opened my eyes to this battle between legit medicine that has poor or no real cures, and the predatory alternative treatment industry that takes advantage of sick people when they are most desperate, this is something I think and write about a lot.
Having said all of that, you are in a real
pickle here, so maybe CD is worth reading up on and seeing if it may be worth exploring. If you decide you are curious, the book that explains the thinking and “science” behind the use of CD is called Healing The Symptoms Known As Autism by Kerri Rivera, and there is a Facebook group called CD Health I find has many seemingly credible people, some of them medical professionals, using CD and sharing information to help move the cause forward. The premise is that many currently incurable diseases may be caused by some type of (possibly) as yet unidentified pathogen and slowly and gently napalming our system with a global anti-everything can get at even unknown beasties, as well as more common ones. I found a real MD, a Stanford grad, in Allentown who was very smart and personable and is using CD with some patients and didn’t seem like a nut job, and I can give you her name if you like.
My cherished neighbor on Wellesley Road died of ALS about two years ago, but I attended Gestalt training years ago with Mariah Fenton-Gladis, a famous Gestalt therapist who lives nearby and has been living, joyfully, with ALS for over 25 years, and she is an inspiration and still trains therapists.
This is your journey, and I respect any choices you make as you navigate this sneaky, cruel disease, and I don’t purport to actually know anything helpful, but like all your friends and loved ones, I feel like anything I can do to help, including not offering untrained, unreqursted medical advice again in the future , I’m here if you need me. I ran into Emma recently and would be happy to spend some time with her as a support, too. I can hang without needing to “share” unbidden advice and medical suggestions, swear!
Thinking of you, sending love and light to you and your family.
Mary Harris
So sorry to hear that we’re part of the same club, but thank you for sharing your story. I’ve had a similar approach…no DP but light exercise such as swimming and biking (well triking b/c of my balance). If I could be so bold to say…I hope you keep doing yoga and swimming, or at least water walking to the extent you’re able. The range of motion is important, and stretching your muscles just feels good. I don’t have a PEG but a friend of mine has both a PEG and a trach and he uses a hoyer lift to get into (his own) pool. So, it can be done.
Anyway, I mostly wanted to say “I hear you.” Nothing puts life in perspective like ALS. What matters, what doesn’t, and the importance of enjoying today. An ALS hero of mine, Chris Rosati (Google him), says that his daughters will be “shaped by ALS, but not defined by it.” I think that’s a great way to look at it. You’re teaching him so much by how you live with this disease — how he can grieve, but appreciate more, love more.
All the best to you,
Andrea
Dear Paul,
I remember the day we went out to the ocean and your comment about a Russian salad with dill “an explosion of taste”; your beautiful apartment in Park Slope; I was so happy to find Emma on Facebook and see how well your life has turned out…
This is the age when all evel things come upon us, and I am speaking from experience…
Hope you body stays strong and progression of ALS stops miraculously.
Thank you for sharing this and you and Emma will be in my thoughts. I will send good vibes your way …
This is a beautiful essay, Paul. One that reflects your voice and personality, the neighbor and friend we’re grateful to have. I’ve not known someone who’s had ALS before and I’ve only known of the symptoms and progressions of the disease in a broad sense. Your words make them real and accessible, frightening but not completely so. We’re thinking of you and your family and wishing the light of love continues to warm and sustain you with each step forward.
Paul,
Beautifully written article, but so sorry to hear such sad news after all these years of not being in touch. My thoughts are with you and I hope you continue to stay strong and maintain such a positive outlook against what I can only imagine is such an overwhelming and difficult point in your life. I wish you and your family only the best, and hope that you continue to maintain such an amazingly positive attitude throughout this difficult journey you now face. All the best, Dave.
Paul: I am moved at the honesty and humility with which you describe this part of your journey with ALS so poignantly.
Not a day on my knees in prayer goes by without you in it.
I continue to wish for your quality of life in every moment.
Thank you for sharing your lived experience of ALS with all of us.
Love You,
Kerry
RIP Paul, I am so sorry for you and your family