Pardon my “French” in the title of this post, but I certainly can’t say this particular story is about gratefulness in the sense of something fantastic happening in my life like most of the rest of my posts. I’m a realist, and ALS sucks about as bad as anything you could imagine. But I want everyone to know that I am not going to lose my health and physical fitness battle by going down without a fight on both the medical and personal fitness sides of things. I truly love life, and I’m a really stubborn bastard when it comes right down to it!
FYI—This post is rather long and not really intended to be as fun or entertaining as some of the others, but I wanted to do something to increase understanding of ALS from the patient’s perspective. It’s a long, winding and very bumpy road that I feel obliged to discuss even if I’d rather be writing about something fun like most of the other stuff on the blog. I briefly explained things in my opening message a couple of months ago, but this is the updated, more detailed version.
Like cancer symptoms, a lot of neurological symptoms are invisible from the outside, and I completely understand why others don’t really fully understand it. I’ve had countless well-meaning and sincere friends and relatives tell me that I “don’t look that bad” or they want to be kind to me and take me out to parties, concerts, sporting events and other social stuff because they are just trying their best to be great friends by helping me maximize the time I have left, and they honestly don’t understand all the hidden torture and limitations of ALS and other neurological diseases. The way I tell people to think of ALS now is a form of “nerve cancer.” I know that’s not technically correct in a medical sense, but it is a term that helps people understand the degenerative nature of the disease. I sure as hell didn’t understand until it hit me, and as I degenerate weekly I have to reach new understandings and adapt as I go.
The degenerative nature of ALS is really the toughest thing because it’s always going to get worse, but you don’t have any idea which parts of your body will be disabled or how quickly it will happen. I’ve seen ALS victims who are still limping around but can’t speak a word. I’ve seen others who are the exact opposite. I’m one who is losing control of all my muscles from head to toe at roughly the same rate as you will see when I explain my journey below. Some victims last 10 months, while others last 10 years, and the average is about 2.6 years. But it’s a hard (and expensive!) disease to diagnose (as you will see), so any “average” is a bit fuzzy in my mind. So read on if you have a little time or you simply want to know my current status as some of my friends do. Or skip this one and stick to the awesome pre-ALS stuff in life for which I’m obviously grateful. Totally your call…
To be perfectly honest, even though I am accepting the reality that there’s a 97% chance that my ALS diagnosis is correct, I’m still bugging every doctor I can get to pay attention to look at obscure infectious diseases, my constantly painful spine and any other ideas they might have. Something causes these nasty ALS symptoms, and sooner or later someone will figure it out (even if it’s been 150 years since Charcot discovered it, dammit!) Who knows—Maybe my diagnosis is wrong; maybe something in me will reveal itself if I bug enough doctors to look hard enough, or I’ll be the one in ten thousand whose disease goes into remission and heals for no apparent reason. Or maybe I’ll be the freaky human lab rat whose symptoms or tests present something in such a way that doctors are able to discover a proximate cause of ALS? All long shots to be sure, but why give up when I’ve got absolutely nothing to lose?!!! Imagine the blog I could have if I were some even freakier freak of nature than I already am—Hahahaha!!! Hell, I wouldn’t need a blog then—The New York Times and the New England Journal of Medicine would handle a lot of the publicity for me. Or I’d be a TedTalk topic…
All my hopes notwithstanding, this part of my story begins in March 2018 when I went to a concert with my ex-GF and longtime friend April and experienced something very unusual, at least for me. We were at a Rolling Stones’ tribute band concert at a local casino. We were listening to the band and dancing, and I probably had about 6 beers or so by the time the show was over in about a 3-hour period. This was nothing unusual for me, and I felt just fine. We went upstairs to have dinner, and I had a glass of wine and got up to go to the bathroom. On the way out of the bathroom, I began losing my balance and my body felt like it had had 15 drinks but my mind was pretty damned clear. I had obviously been drunk at other times in my life, but this was different in that only my body was affected. I fell down once on the way back to the table and told April no more wine for me! While sitting down I felt fine, but when we got up 90 minutes later after dinner to leave, my balance problems returned immediately and I wiped out twice more on the way out! I felt 100% sober by this time, and we both thought that I had been “roofied” by mistake or something weird like that.
I was home by 9pm or so (it was a Sunday afternoon show), and I still felt a little weak and wobbly, and continued feeling the same again in the middle of the night when I got up to use the bathroom. By the next morning I still wasn’t 100%, and by then I was positive I had gotten some small unintended dose of some kind of drug. (Does anyone intentionally “roofie” dudes in bars? Maybe, but the whole thing was just so damned weird!) I felt a little off for the next few days, and when I went out for a trail run a few days later, much to my dismay, I couldn’t perform a running gait!!! My right leg just wouldn’t lift up in proper timing with the left (neurologists call this by the very scientific term “drop foot,” but that is a very accurate description!) I had been experiencing increasing low back pain in recent months, and my first thought was that I had somehow re-injured my already twice-herniated L5 disc. Needless to say, I was pretty bummed out about that and thought it would get better with some rest, stretching, etc. Just to see if the rest was working I would try to run a few steps, and I could rarely do it at all! I did manage to have a mediocre day almost exactly a month later, and I ran my last trail ever on April 21, 2018. Even that was a slow one (3.5 miles in 51 minutes on a relatively flat, easy trail), and I felt like I had to mentally focus on every step just to get through it without wiping out.
In hindsight, my neurological problems probably began 6-12 months earlier, but there was nothing glaringly obvious to me until that night in March at the concert. I had been going to my chiropractor for the low back pain and a snapping, popping neck since September 2017, and I figured it was just something an old guy who liked to run and work out would have to deal with and manage the best I could. As I think back on that period now though, there was a slight decline in my overall performance in a few exercises, and I noticed an occasional feeling of shortness of breath when there really shouldn’t have been a reason for it. I also remember occasionally stumbling over a few words with a lots of consonants in them (like my name and the name of my company) and I had obviously said those things at least 10,000 times in the past 25 years! But I just thought I was an old man with a back problem who was possibly working out too much, and my strength training really wasn’t affected to any great degree. I was already being proactive there and had designed my workouts so that I wouldn’t put undue stress on my low back anyway. And ALS, PLS, cerebellar degeneration, or any kind of motor neuron disease was certainly nowhere on my radar…
I asked the chiropractor what he thought, and strangely enough to me, he recommended I see a neurologist. I thought for sure he would say it was my back because of the pain and previous injuries, but I took his advice. A week or two later I did, and the neurologist ran me though a bunch of physical tests in his office, some nerve conduction tests to measure the speed of my motor neuron electrical signals, and offered me the option of spinal and brain MRIs, which I did. He did see evidence of my herniated L5, some degenerative disc disease, and some minor nerve pinching, but given that the initial symptoms had appeared while drinking alcohol, he recommended I stop drinking and see if things improved. I hadn’t known it, but alcohol is actually a neurotoxin, and given my history as a hard partying Cheesehead, I was pretty bummed out by this medical advice!! Needless to say, I bit the bullet and followed it, but my symptoms continued to decline in various ways.
The next major motor skill to go south was my ability to play the guitar, and that happened around July 2018. I had played for over 40 years by then, and although I could still form the chords with my left hand, I could no longer strum in a rhythmic way with my right arm and hand. In essence, my right arm had gone the way of my right leg, and I also noticed it was getting much harder to write (I’m right handed). By this time, it was also getting more difficult to speak clearly at times. This was still pretty infrequent compared to the leg and arm problems, and I would occasionally have days where shortness of breath was a problem for a few hours at a time.
At about the same time, I lost the ability to dance. Besides playing in over a dozen bands, I had seen over 1,000 music shows in my life, and I absolutely loved to dance. I remember holding onto the band’s monitor speaker at my last show (see below) so I wouldn’t lose my balance and so I could stay out on the floor longer. I was one of those guys who would go out and dance by himself or with whoever was out there. I could literally dance all night, and I loved it! Losing all my rhythmic musical abilities was perhaps one of the most painful things to me.
The Limping Phase: By the end of the summer, I was limping noticeably almost all of the time. My co-workers and clients noticed and expressed their concerns. All of this worried me enough that I figured I better get a second opinion, so I went through another round of physical tests in a different neurologist’s office, some blood tests, and a $3,000 DaT scan for Parkinson’s disease. The test for Parkinson’s turned up negative. At this point I thought I better break out the big guns, and I asked for referrals to Barrow Neurological Institute and Mayo Clinic. Of course, I couldn’t get an initial appointment at either for 2-3 months, but I’m not going to get too far into what I think is wrong with our current medical system. This is a blog about gratitude, and I intend to keep it that way!
I was beginning to get quite nervous at this point but kept hitting the gym 4-5 times a week. A good workout almost always made me feel better, so I figured I was doing the right thing. I couldn’t really run anymore, so I switched to low-impact cardio like the elliptical, the stationary bike, and the stair climber because I was more convinced than ever that my increasingly painful back was the source of my problems. And I continued lifting weights of course, although I was noticing that my right side was becoming about 25% weaker than my left, and I was starting to have increasing right shoulder pain to go along with my ever increasing low back pain.
I managed to maintain my strength pretty well until about December, and by then I had to do a lot more work on the machines versus free weights because my balance, coordination and core strength were steadily going south as well. During the last 6 months of 2018, I was able on some days to alternate a limping jog for 50-100 steps with a few hundred steps of walking in between, and I did manage to walk 3 miles or so a few times on flat trails during late 2018. One other thing that became abundantly clear was that it was much easier to maintain my balance going up a hill or upstairs than down. I learned that the hard way by wiping out a few times and fortunately wasn’t hurt.
The Cane Phase: By January 2019, I could no longer walk safely without a cane so I bought a pair of those cool adjustable trekking poles they have at Costco. I was still working, although I often had an assistant with me on set in case something physical needed to be done in a hurry. By March I was so slow on set that I realized I wasn’t giving my clients the full value of what they were paying for and decided I had to sell my business and go on disability. At that point it was a major challenge just to do normal stuff around the house (cooking, cleaning, etc.), my level of fatigue was increasing rapidly, and I just couldn’t move quickly enough to get all my work done.
By January 2019, I had seen 4 neurologists and 2 internists, and after spending about $30K, I received my first diagnosis of primary lateral sclerosis (PLS), a slower moving but very rare form of ALS. I saw neurologists number 5 and 6 shortly thereafter, and by March I was pretty well screwed according to a good cross section of neurologists, including a couple at the Mayo Clinic. I don’t have too many medical photos, but here are a couple from the Mayo Clinic where they injected me with 1,000mg of methylprednisolone a day for 5 days in a row. OK—So I lied in my “Fatness to Fitness” article. I did ‘roids 5 times and it cost me $5,000!!! And the vein stickers on the weekends were newbie trainees. One of them couldn’t hit my vein after three tries, and I was a dude with about 10% body fat at the time. My veins were so easy to see and hit that I could have done it myself with my other hand—Hahahaha!
Despite all my efforts to the contrary, I graduated to the wheelchair phase around April 2019. I just didn’t have the neurological control of my legs and my balance to walk any distance safely at all, even with a cane. I started wiping out in the gym because my balance was gone, and my solution was of course to work out the best I could in a wheelchair. I had seen other people doing that, and I remember admiring their tenacity, so I tried it myself in April. I worked out a couple of times in the chair with my trainer Dave at The Yard, and I did about a half dozen more workouts at a place called Ability 360, a very special gym geared specifically toward the disabled. I had been there before because I had done a few video and photo shoots there, and I loved both the concept and the people who ran it. You don’t have to be disabled to work out there though, and I would encourage anyone to check it out. It’s modern, beautiful, clean and friendly–Give it a try sometime even if you aren’t in a wheelchair. Exercise is good for everyone to the extent that they can do it! But by mid-May, I could no longer exercise because of the increasing intensity of pain and fatigue as well as the lack of balance and coordination in general. After my last workout of 24 sets in a wheelchair and 10 minutes of slow cardio on a stationary bike, I was exhausted for the next 3 days! As much as I hated to hang it up, I had to. I needed all of my energy just to make it through the day.
So I tried to make the best of it and schlepped around my favorite store in one of their awesome carts. (Costco rocks, and everyone in the pharmacy knows me now!) In a weirdly prophetic coincidence, I ran across some old photos of myself in about 2013 (long before my disability) mocking people in motorized carts at Scottsdale Fashion Square. I wasn’t trying to be mean spirited of course–just goofy, but I guess karma really is a bitch!
Throughout my first year, I was also reading online and investigating everything I could about the medical science surrounding MS, ALS, Parkinson’s Disease, spinal degeneration, infectious disease, nutrition and anything else I though might be affecting my health. I think I did more research than when I was writing term papers for a living back in the day! Of course I received a lot of well-meant (but trendy, in my humble opinion) advice from friends about diet being the cause of all evil in the body and stem cells being the cure for everything that couldn’t be cured by a diet. In that sense, the internet is highly overrated as every nutrition guru tries to hawk their “”nutritional protocol” ( a fancy term for “magic diet”) which can supposedly cure everything from MS to cancer. And I was extensively tested twice for food allergies, and came up negative for 99% of the edible stuff on earth. (And there is no toxic mold inside my house—I had that tested too.)
Just for the record, I’ve attached some photos of my typical dietary regimen for the past 8 years. I normally ate about 120g of good protein, 6-10 servings of vegetables a day, and I had given up alcohol when my neurological symptoms began. Just for grins I’ve been gluten and dairy free for about a year because I read about something in a medical journal called “gluten ataxia.” I also tried eliminating various foods for a month or so at a time and took that “Restore” product which was supposed to fix “leaky gut” syndrome and stop the blood-brain barrier from being broken. Regardless of what I did, my symptoms continued to worsen, and here I am now. And yes I know that everyone has their religious beliefs in “magic diets” and will find something “toxic” in the foods pictured below, but I was eating healthier than 95% of Americans and honestly don’t believe that is the cause of my ALS.
In spite of my skepticism of both the allopathic and naturopathic medical systems in this country (who can’t seem to cooperate even when their patients are dying!), I’ve explored naturopathic treatments too. I was turned down for mesenchymal stem cell cerebral spinal fluid (CSF) injection therapy in Panama City because they didn’t think it would help me, but approved to try it in Bangkok for about $30,000. To their credit, they didn’t claim it was a cure for ALS–They said it could potentially (or not) slow or halt the symptoms down by a few months if I were lucky, and that they honestly didn’t know why it helped some patients and not others. My thinking was really to try it for the hell of it since it’s always possible that I have been misdiagnosed and that I had nothing to lose but a little money anyway.
The thought of a 30-hour trip to Thailand is overwhelming in my condition, but I would gladly try a similar treatment here in the US–I mean, we’ve got to be way ahead of BFE places like Panama and Thailand in terms of medical technology, right? Oh, wrong–The wonderful people at Big Pharma, MegaMed, and their lackeys at the FDA have decided that any type of CSF stem cell injections need another decade of “clinical trials” before it’s even legal here. Apparently I don’t own my own body, and I certainly don’t have the right to try to save my ass from a deadly disease here in the “land of the free” until American MegaMed corps can figure out how to patent a treatment and overcharge health insurance companies and Medicare $100,000 for it. And I’ll be dead by then along with at least 50,000 others…
That’s enough medical/political ranting for my gratitude blog, so I will say that I have explored a variety of naturopathic treatments to potentially ease my symptoms as well. I’ve tried a couple of nutritional supplement protocols (which made me feel worse!), some ozone therapy (which seemed to make me temporarily feel better, much like the steroid therapy at Mayo Clinic shown above), to some electrical zapping which didn’t seem to do anything at all. And I’m of course taking a few allopathic, Big Pharma things for muscle spasms and pain relief, but they are only temporarily useful in the case of a degenerative disease like ALS.
Just to be quite clear for those that haven’t seen me:
–I can only walk a few hundred steps a day around the house in my walker because the muscle spasms in my legs are so bad they won’t bend when I put any weight on them.
–After about 30-40 tiny steps with the walker, I have to sit down for at least 15 minutes before getting up again. If I sit down for an hour or two and “rest,” it’s even harder to get up because the muscle spasms tighten my whole body to the point that it doesn’t want to move and creates additional pain. I’m damned if I move and damned if I don’t…
–I can’t get up from a seated position without using my arms as well, and I can’t maintain my balance standing without holding onto something sturdy with my hands.
–If I stand upright for more that 2-3 minutes, my back pain from the muscle spasms is unbearable and my legs are at risk of collapsing. My legs are getting weaker and in a month or two I probably won’t be able to stand at all.
–I can’t bathe except seated with the help of a caregiver. (Well, I probably could, but wiping out in the shower and then not being able to move would be a very bad idea!)
–I fortunately can use the bathroom myself for the moment, but that probably won’t be the case in a month or two. And the bathroom has to be cripple friendly or someone else will have to lift my half-naked ass off the toilet. My friends keep inviting me over, but if I can’t use the bathroom, I sure as hell can’t stay very long!
–I can’t really write more than one capital letter every 5-10 seconds or so because my hands are so weak and uncoordinated.
–It’s getting increasingly difficult to perform any fine motor skills with either hand. I’m talking about everyday stuff like opening a bottle, eating with a fork, opening an envelope, picking up an object without dropping it or knocking something else over. Both arms and both hands are getting weaker and less coordinated, and my ability to grip objects is going away.
–My typing is pretty slow and difficult and it won’t last much longer. I used to be a whiz. I’m trying to get as much out on my blog as quickly as I can before it’s too late.
–My speech is so slurry and labored that I sound like I’ve had a half a bottle of JD by 10am.
–It’s getting increasingly difficult to chew and swallow although I can still eat most food at the moment.
–I’m sleeping in one of those mechanical hospital beds now to relieve back pain and help raise me up and down so I can get in and out. My core isn’t working well enough that I can even roll onto my side without a huge effort and grabbing the side handles of the bed to help.
–It’s getting increasingly difficult to breathe, which is the scariest symptom of all to me.
–My level of fatigue is incredible. I’ve probably got only about 10%-20% of the energy I had a year ago, and it’s getting worse. In spite of constantly feeling exhausted, sleep is hard to come by because sitting or lying in one position too long aggravates the muscle spasms, causes pain, and wakes me up.
At some point, ALS victims need to make tough decisions about how far they are willing to go to prolong their lives. When you can no longer move, eat and breathe unassisted, you end up like the people in the photos below. Their ability to move is generally limited to maybe one arm, a few fingers and their eyes, and you can see that they have breathing and feeding tubes as well as computer technology which allows them to communicate one letter at a time through a computer screen that recognizes eye movements. (I don’t think a foodie, gabby bastard like me would be very happy with any of that technology!) How far anyone wants to take this is a very personal and difficult decision that is looming just ahead for me. I think about it every day, particularly on days when it’s difficult to breathe.
Having said all that bad news, I can still say that I haven’t entirely given up on the medical side of things even now. I’ve recently gone to neurologist number 8 at least last week (at Barrow), and he’s agreed to run a few more tests on my spinal fluid and refer me to an infectious disease specialist to see if anything obscure was missed so far. I also have a couple more referrals in the works—One to a local spinal neurosurgeon, and another to a diagnostic genius “Dr. House” kind of guy in Dallas who is going to give me his opinion based on my medical data I have sent him. So I am fighting until the end in every possible way I can to make sure it is really ALS and not some other incredibly obscure disease.
Maybe there is a lesson in gratitude here after all. I have never had to fight this hard for anything in my life, and it’s oddly gratifying to know that I can fight pretty damned hard when I have to. I was never even in a fistfight when I was a kid (I was always Mr. Chill Peacemaker even back then), and now this! As I’ve been writing the blog about my very enjoyable life, I began realizing how easy things were for me, and I also began to think that readers who haven’t had it nearly as easy in life might thing I’m kind of a clueless, ungrateful asshole! And I’m certainly not going to say that they are wrong. For most of my life, things came so easily to me that I really wasn’t in tune with the suffering of others. I had generally written most people’s problems off as things that were largely their own fault, and I didn’t really have the empathy I should have had on many occasions. And I’ve been taught this lesson in life by all of you who have come out and offered me your amazing love and support! When you think about it, I was given the gift of really never having to learn things the proverbial “hard way” for my entire life, and now that it’s my turn I realize I’ve been one of the luckiest bastards on the planet!
Since I’ve started going down, I’ve noticed that I’ve been paying a lot more attention to conversations I’ve had with my family and friends about the hardships other people are facing. In just the past week I heard about a friend’s dad who was diagnosed with brain cancer and died five weeks later. I heard another story about a 3-year-old girl who died of cancer. I’ve met ALS victims who are in their 20s! People die from or are disabled by heart attacks and strokes unexpectedly every single day. So as shitty as ALS is, I can say that me sitting here (scared shitless and in pain to be sure) is still a hell of a lot better than a lot of people have it! I had a long conversation with my friend Jean the other night about God torturing Job, and it’s really just one of life’s challenges that we all have to deal with suffering in some form try our best to be at peace with it. I must admit I haven’t mastered the peace part yet, but I’m much worse physically but strangely figuring out the peace and acceptance as I fight my way through the rest of life. And I thank you all for your kindness, help, and understanding. It truly is more than this really lucky bastard deserves.