For instance, I can no longer kiss my wife with anything resembling passion, which is a tragedy because she always said I was a great kisser. (Our goodnight kiss on our first date -- a blind one -- magically transformed a relatively crummy evening into a wonderfully enduring love affair.) But the disease has affected my tongue, jaws, throat, nasal passage and lips.

I can't kiss, I can't whistle, I can't blow my nose, I can't suck on a straw and I can't blow up a balloon for one of my grandchildren. I can't sing, I can't speak with any clarity, I can't yell, I can't argue, I can't answer the phone and I can no longer rail at the TV or newspapers, which was also one of my passions.

I can't eat a meal without choking at least once (more on eating later, as well). There are many things I can no longer eat or drink or chew (like gum and candy). I can't eat a steak or any tough meat. I can't eat a salad, a staple at most dinners (too many slipperies I can't manoeuvre into chewing position). And I can no longer go out for lunch with pals (takes me too long to eat and then there are the choking issues).

There are many other things I can't do. I can no longer take a shower on my own. The movement required for washing and drying whacks me out and my unsteadiness on my feet makes it dangerous. However, we have found a way around that -- Norma gets in the shower with me and does all the heavy work (need I say showers have never been this much fun?).

I can't cut my food with a knife and fork and must use special utensils to accommodate weakened muscles in my wrists, hands and fingers. Can't cut my own nails or shave. Can't manipulate the buttons on my pants or tie laces on shoes. Turning keys and door handles is a challenge. Same with lamp switches and TV knobs.

A toddler probably has more strength when it comes to lifting things. Books, magazines, coffee cups, all sorts of everyday items you wouldn't think twice about. However, I overcome this with various strategies I've been forced to develop. Some parts of my hands and arms still work, so I adjust accordingly, if clumsily. But it's a royal pain in the ass.

And speaking of that area, so far I am able to fend for myself, albeit with the occasional acrobatics. The big fear, of course, is the day when I have to ask for help with bathroom duties. But my mentor, Morrie Schwartz (remember Tuesdays with Morrie?) convinced me that isn't as bad as I think. Sit back and enjoy it, laddy (see showering).

I used to be one of the faster typists in the game (two fingers, so I didn't have that far to fall). No longer. I've not only slowed down considerably, I now have to use aids attached to my desk that do all the work for my arms. I'm writing this, so obviously they work. But slow.

What else can't I do? Can't walk very far without the aid of a walker. Can't cook or prepare much in the kitchen. I can still drive without any problems, but I don't because it makes me nervous and it's dangerous. Can't do household chores or fix stuff. Can't shovel the snow, take out the garbage or mow the lawn (I didn't say it was all bad).

There are a million and one other things -- I'll save them for the movie. But it gives you an idea how this disease permeates your every movement. There are certainly times when it makes you want to give up -- this week it took me 10 minutes to remove a pair of tight-fitting socks -- but we ALSers are a more hardy bunch. We find ways around.

Actually, that's one of the key elements to surviving with this illness. You develop strategies to enable you to do many of the things you did before. The first strategy, of course, is asking for help. Can't do it, ask someone to do it for you. Sure, it's hard in the beginning, but not as hard as when you have to pee something awful and can't get your pants open.

(Timely example: As I was writing these words, I tried to be bold and take a drink at the same time. Naturally, I dropped the glass and spilled pop everywhere. No sooner had I growled -- I do a lot of that -- son Jesse, 22, was walking by, saw what happened and quickly cleaned it up.)

Another strategy is trying different approaches. Can't do this, do that. Remember the socks? My fingers weren't strong enough to slide them down, nor could I step on the toes and pull them off that way. So I got a wooden spoon and used it as a shoehorn. Success.

It's amazing how inventive the human mind can be when necessary. I was trying to light a match the other day. Couldn't do it no way no how. Couldn't even tear it from the package. (I still have a pretty solid grip, but can't work the fingers.) First I got scissors and cut the match off. Then I turned on the burner on the stove, touched the match to it and, voila, fire.

The switch on our bedroom lamp is too stiff. I use pliers I keep by the bed. Works on the TV, too. Can't easily swallow the 20 pills I take each day; I put them in apple sauce. Can't open the pill bottles; I now use a pill dispenser that Norma loads each week. Can't manoeuvre a straight razor -- use an electric one (I hate it). Can't easily navigate the stairs; I hold on to the railing. Can't do buttons -- wear sweatshirts and pants with a stretchy waist. Can't drink from a can or bottle -- use a glass. I read three papers a day and my arms get tired holding them. So I sometimes sit at a table and let it do all the holding.

Pretty smart feller, eh? Nah. Folks have been finding ways around since the very first caveman figured out that the cute ones with the curves were ladies (okay, I like Mel Brooks). But it's true and amazing what you can get done if you have to.

Now if I can only figure out how to shuffle a deck of cards with my elbows.

 

Here's what I can do:

I can't speak clearly but I can make myself understood in a pinch with a series of mutterings and charades. But mostly I use a laptop talking computer, a wonderful device that speaks for me -- I type, it talks. I tried to get a Mel Brooks' old Jewish man voice for some character, but wound up with somewhat of a Swedish accent named Harry.

I take Harry everywhere with me -- including interviews -- and it works out fine. I also use him for phone calls occasionally, although I often have to repeat a sentence. Harry doesn't mind. But the person at the other end has to allow for typing time.

I can also communicate through e-mail, which has been my saviour. I get probably 30 e-mails on an average day (aside from those promising me larger body parts or cheap Viagra), both personal and business-related. My problem is I am as long-winded in e-mail as I am in regular conversation, so I whack myself out responding.

Eventually, I won't be able to use the computer so somebody will have to respond for me. And then, I fear, this machine will go quiet. But I hope that's still a ways off.

They still publish my work every week in The Sun so I am able to do my job. But not without the aid of my new executive assistant, Norma. She sets up all my interviews, accompanies me and takes notes (I also tape). The people seem to adore her because she's so open and fresh. It makes my job so much easier. (If I could only teach her to write, I'd be set.)

I may no longer go out for long lunches, but I can receive visitors. I have a wide range of wonderful friends and relatives who drop by, some of whom also take me on outings, although I can't walk too far. A couple of close buddies come by every week, imbued with the spirit displayed by writer Mitch Albom in his Tuesdays With Morrie. We (meaning me, them and Harry) have wide-ranging and enjoyable chats.

I go once a week to watch my two sons play baseball (although 20 years apart, they patrol the outfield side by each) and they provide me with a multitude of thrills. Harry is one of the louder cheerleaders.

I have my family close by and they look after my every need, which is pampering, in a way, but I enjoy (and appreciate) it to my very core. I am also seldom alone and they are as splendid company as one could have. (And I love them so dearly I can barely say it without tears forming.)

As I said, I can't walk very far, but we can now park close, thanks to the new handicapped decal on our dashboard.

I can still read my books, papers and magazines without enormous difficulty. I watch TV. And during the summer I could lie out on our deck -- with Dave the dog, who seldom leaves my side, as company -- and enjoy the fresh air.

And, of course, I have my mind, which is untouched by ALS' long reach and will apparently remain so for the remainder of this journey. There is certainly plenty of time for reflection, and lately I have begun rummaging about in my past.

Once you come to terms with the idea your time here has been shortened, looking back over your life is a normal and rewarding reflex. Did I live well, did I treat others properly, could I have accomplished more, did I give my close ones the love and support they deserved? Is there still time to do more, to fill in the blanks, to right the wrongs?

So you can see, despite the avalanche of restrictions, my days are quite busy and my life full of riches.

And besides, what I often tell people is that I am not sick. I have a pretty serious disease that makes my muscles useless and will one day kill me. But I feel fine. I have no pain. And my mind works as well as, if not better than, it always did. So I'm raring to go.

Oh yes, there is one other thing I can do. I can hang on to a small sliver of hope, leave open a tiny crack in the door, that things may turn out differently from the way they now appear to be scripted. A cure, more effective treatment, a remission for a spell. Who knows?

But yes, along with all else I can do, I can still hope.

 

Remember those bumps in the road I mentioned?

I guess if they were restricted to the above-mentioned weaknesses and difficulties, life would be uncomfortable and trying but reasonably bearable. We're humans. We're built to adjust.

But alas, there are unfortunately a few bumps that extend a little further along the path, rise a bit higher and inflict a touch more damage to both body and soul. More than a touch -- a lot.

The least of them, albeit potentially most dangerous, are the falls. Once the disease penetrates your legs, walking becomes a tricky proposition. Some liken it to a Frankenstein Stroll. The danger is you're unsteady and if you're not careful, you can take a nasty fall.

I have already had my share of tumbles. The main problem is my arms are weak so I can't naturally break my fall. They tell you to try to fall straight down, but you don't always have time. I've had an assortment of head knocks, bumps and bruises and even a black eye. So I have to make a conscious point of being ultra careful.

Getting up from a fall can also be an adventure, but that's another story. Let's just say it's ideal if someone is nearby to help you upright.

Choking. That's a delightful bump and it comes in two forms.

First is your everyday choking and it relates to problems with swallowing. Most ALS folks don't get that until the final phases of their disease. But to those with Bulbar ALS, it comes early and often.

At least once every meal, a little something gets caught mid-journey and causes coughing, throat clearing, gagging and repeated swallowing until the little beggar finally goes down. It also happens with liquids.

(As I was reading this section over, I was eating a tuna sandwich. Tuna can be dry and often little shreds get stuck in my throat. I started coughing and clearing my throat, then took a quick drink and it cleared. My ever-vigilant better half ran up the stairs for nothing.)

After a while, you become accustomed to this little feature and develop strategies to combat it. It's annoying and uncomfortable, but also manageable. It just means you eat a lot slower and more carefully.

Then there's Choking. Real Choking. This comes about in the old-fashioned way, when a piece of food gets caught in your throat and blocks the airway. Because of weakened muscles, you aren't able to cough it up as easily as a well person might and you require assistance.

All my family has CPR training and can perform the Heimlich manoeuvre. Norma had to use it on me twice and both times I was sure I was a goner. To safeguard against choking in this manner you make sure every morsel that passes your lips is cut into small, manageable portions.

Alas, the result of all this safeguarding is never-ending meals. Think about it. Not only does it take forever to chew something and then somehow manipulate it into position for swallowing, but then you have to make sure it doesn't stop midway or lodge further down in your throat.

I'd say each meal takes me a good 90 minutes to get down. The danger here is you get so bored reheating your food and sticking with it, you tend to want to give up. But you can't. If you don't eat enough, you lose weight. Lose enough weight and they have to surgically insert a feeding tube opening in your stomach. Although I know I will eventually require one, I'd like to avoid it as long as possible.

(The good news is at my last checkup, the scales showed I've only lost seven pounds since May, which is excellent and due to my perseverance and willingness to down cold meals.)

Because of certain things you can't manage to get down, you are forced to give up many favourite foods and seek others to supplement them. It's an ongoing battle and many of us dread mealtimes. Believe me, it's terribly frustrating and requires some serious adjusting, especially when your appetite is as solid as mine.

But all of the above are pikers compared to my "favourite" bump.

One afternoon, in the midst of an interview with a voice therapist at the Sunnybrook clinic, I started to giggle for no reason. Then I began to laugh, uncontrollable laughter that brought tears to my eyes. I was embarrassed, tried to explain, but could not stop. I laughed like a loon, literally.

The therapist ignored it because she had seen it many times with other ALS patients. It's called emotional lability and it's a son of a bitch.

The condition, which involves both laughing and crying, generally affects people who have diseases or injuries of the brain and nervous system (ALS, multiple sclerosis, Alzheimer's, severe head trauma or stroke). Although there are still many unknown factors, some researchers believe it may result from disruptions in certain pathways in the brain that are important in expressing and controlling emotions.

While many are tearful and sad as a natural reaction to living with ALS, it's most often a side-effect of the disease and about 50% of ALS sufferers experience it to one degree or another. It may be triggered by something funny or sad, but the reaction is way out of proportion to the event. And very often, laughter can turn to tears in a flash.

In some people, it's controlled by medication. So far, I haven't been too successful in that regard.

I first noticed it while watching TV and laughing at something that was only marginally funny or tearing up at the merest suggestion of something sad. Other times, I'd start laughing for absolutely no reason. Or crying.

(I really knew I was in trouble when I was laughing louder than the laugh machine used in the premiere of the Whoopi Goldberg TV show when there was absolutely nothing to laugh about. Hey, maybe I should hire myself out to Hollywood.)

It's much worse now and it's caused me some truly embarrassing and uncomfortable moments, although most people are wonderfully accepting and understanding once they know what it is. However, my tendency is to stay away from a lot of social situations where I know it's bound to happen.

The worst time for me was at my grandson's bar mitzvah. Soon after I arrived I began laughing in a high pitch and couldn't stop. Norma and I left the main room in the synagogue and scurried upstairs to the balcony. When it continued, we left rather than disrupt Jordan's special day.

As soon as I got into the car, the laughter became uncontrollable weeping, but at least I now had a legitimate reason.

It's happened several times since -- at my sons' baseball games, in interviews and at family functions. There are also periods at home -- which is still my safest haven -- when it happens repeatedly. Often, too, it's triggered by my feelings over my condition and how it affects my family and the fact I likely won't be with them for too much longer.

For me it's a royal pain in the butt, mostly just embarrassing, but it's something I have to get over. Or stay home.

Meanwhile, all of these bumps in the road, big and small -- and I know there are even more trying ones down the highway -- have taught me stuff I know other ALSers have learned before me.

The main thing, of course, is to not let them defeat you. Don't fear them. Accept that they are part of something beyond your control. Embrace them, learn how to cope with them, and then shove them aside. They're bumps.

Let others help you. This is not a disease for heroes so there is no sense in trying to go it alone. Let others in, especially those who love you, be they family or friends. Let them help you, comfort you and love you. And love them back.

Don't dwell on what you can't do. That's done and no wallowing or whining will change that. Focus instead on what you can do -- and do it -- so you can live as productive a life as possible.

That means trying to maintain as much of a normal lifestyle as you did in the past. Sure it's hard, but it's also doable. You're still in control of you, no matter how much of an ass-kicking you're taking.

And guys, keep smiling. There's nothing like a healthy sense of humour to beat back the demons.

The best way to accomplish all of this? Adopt the ALS motto.

Live life one day at a time.