Tag Archive | Lou Gehrig’s Disease

On the Road Again

How ’bout them Habs? That final game should be somethin’ else! I have a happy husband this morning. We are Canadian, so we tend to root for the only Canadian team in the Stanley Cup race. However, Boston has Canadian players too. Brad Marchand is from our part of the country. And of course, there’s also Sidney Crosby; the Penguins face their own seventh game, do or die. We are hoping for “do”.

For those unfamiliar with Nova Scotia, this is a small province. The odds of producing NHL players are probably against us, owing to population. Yet produce them we do, and not just your average puck-chasers, either. According to one list, there have been 68 NHLers from NS. However, Yarmouth’s own Jody Shelley was omitted from that roster because he wasn’t born here, but his formative years were all spent in NS. He was a local favourite during the many seasons of his on-ice career.

So most Nova Scotians know and love their hockey, even when we don’t always watch every game on TV or at the local arena. My late father, Bert Levy, coached and/or managed teams in the Annapolis Valley back in the day. As a child, I often went to the old Acadia University rink to watch Valley Hockey League contests with him. I vividly remember the excitement, the smell of the place, the hot dogs slathered in mustard! I’ll write about my father in another blog entry at some point.

We have a visit to the ALS clinic tomorrow at the NS rehab centre. We’ll soon know every curve in the road to and from Halifax. I need a good cushion for my butt … which in itself IS a cushion, but not nearly enough! I take along my camera(s) and manage to make the most of the drive whenever I can – but I will never again leave a camera in a hospital! I made that mistake when we were at the Infirmary for the second neurological consult. I had thought of walking through the Public Gardens during David’s tests, to shoot a few images of whatever was in bloom, but misplaced my Canon T4i in the examining room instead. A month later, it came back to me after someone found it and the neurologist’s office tracked down the owner. Meanwhile, thinking it lost, I’d already replaced the missing camera with a Canon 7D, so now the T4i has become a nice backup for the newer and fancier model. Both cameras will last me twice as long. And the lesson has been completely absorbed. They stay locked in my car!

Still, these drives are daunting after awhile. They take seven hours, round-trip, not counting any stops. Our daughter works at an elementary school in Yarmouth; she’s a guidance counselor at Meadowfields. The staff raised money to buy us gift certificates that are certainly making these trips easier to bear. This will be our fifth one and we continue to be grateful for their support. The ALS clinic is held twice a month but I don’t think we need to attend all of them, although there will undoubtedly be a referral or two to other specialists in the future. This week’s consult will involve an anesthesiologist, whose field is pain management, and a GI surgeon. The topic of placing a PEG tube is very much in everyone’s mind right now. ALS patients (PALS) risk choking and aspiration of food as their swallowing function diminishes. Yet they require nutrition, of course, so a feeding tube permits them to receive it with greater safety and comfort. Bulbar-onset ALS, which David has, first affects the throat, voice and associated areas. In fact, he first knew something was drastically wrong when he began choking on his food and swallowing with great difficulty, accompanied by slurred and indistinct speech. Fine-motor control in his hands has greatly diminished. Yet he can still use his legs and get around, albeit more slowly. Limb-onset ALS – which is the more common type – attacks the legs and the other issues develop later. It is, however, normally slower to progress. David’s bulbar symptoms began only in October, 2013.

So he can take walks if he doesn’t overdo it and wears proper shoes. Still, one should never assume. To the casual observer, such a patient appears to be able-bodied. But with a bulbar patient’s loss of strength to eat well also comes weakness in other locations – fingers, hands, arms – and inevitably it spreads to the legs, often striking one side harder than the other for a short time. We are there now. The falls at unexpected moments have started to occur. For a man who not so long ago climbed Gros Morne mountain in Newfoundland, this is a frightening and devastating consequence of his condition.

So the paperwork increases. A form for a handicapped parking permit is waiting to be completed. The definition of a disability includes more than confinement to a wheelchair. Those who suffer from conditions such as ALS, and are still able to walk, fit the definition if they are physically limited to short walking distances. In a small community, mall parking lots tend not to be too daunting but in larger centres, they can be vast. I’ve gained insight into those who park in a handicapped spot and then walk away from their vehicles. Some folks assume they’re abusing the system – and this is not so. They are simply trying to remain mobile, within the limitations of their strength, but can’t push things too far (literally). For cardiac patients, these limitations can arise from severe shortness of breath. With neuro-muscular conditions, such as ALS, there can be other difficulties. When those motor neurons quit, they quit forever. This can happen faster with over-exertion. And in the end, inevitably, the wheelchair and other obvious support devices will come. The series will, in essence, be tied at that point. Nobody should wish this to happen to a stranger in a marked parking space. So if you spot someone parking in a handicapped space, then walking to the mall, please keep an open mind. Please be compassionate. The reality is often not what the appearance might suggest.

We learn as we go. Looking back to May of last year, who could have imagined how life would take such a radical shift? But it does, for many people, all the time. We’re not unusual. Each of us confronts his or her own destiny, for good or ill. There are no fixed strategies to reach that destiny, no set rules of play. We just find the best approach and trust it will get us there. And that the team will bring  its A game, every minute of regulation play, right through to a hard-fought overtime. That’s the goal, after all. This disease will win in the end but it’s not much of a victory when the winner plays dirty.  And ALS plays very dirty indeed.

At Life’s Summit

From this point, a person can look down and back. All the braided paths – so far below – are worn like ribbons in the stone and clay. The man or woman stands at a peak, buffeted by colder winds than either has ever known. Eyelashes blink themselves free of ice, then blink again. No matter that it is spring – or summer – or whenever else they find themselves up here. This chill is no respecter of time or season.

ALS – At Life’s Summit.

If anybody were to think ahead and idly imagine the worst among physical afflictions that burden humanity, surely this one would top the mountain. It is pitiless; its grip is implacable. It holds its chosen men and women firm on the pinnacle, with nowhere left to go but down.

Yet the view remains remarkable. The air is clean and the noises of earth diminish, with their currents of anger, despair, grief and hatred. Up here, it’s between the individual and his or her own will. The body fails but the mind endures. Hands that no longer possess the strength to write a single syllable are replaced by a power of another kind – the power that moves even this mountain; even this weight. Muscles have nothing to do with such a force. If it comes from any identifiable source, that source is the soul itself.

And it doesn’t make any difference whether he once threw the fastest pitch in the league or told a thousand pilots they were cleared for takeoff; whether she sketched a whirling sky or played a Bach partita that wakened God Himself. Whether they stood in front of elementary-school classes or stitched the seams in baseballs. It’s all irrelevant to the man or woman poised on the apex, confronting a destiny that will avalanche every former thing down the slopes and into the past.

The first to go might be the legs with their capacity to walk upright, toe-tap to a fiddler, wander along a beach as the foam fills in each footprint. Or it could be the formation of words, the easy flow of language like a waterfall, clear and coherent. The brain knows what it wants to speak; the throat or tongue or lips refuse to acknowledge its wishes. A man’s roar of laughter is muted; a woman’s cheerful giggle falls silent. A glass of wine turns to an instrument of strangulation. A satisfying meal becomes merely the memory of that meal, distilled into something the body will accept. A steak morsel, a lobster fragment, a strawberry slice, are held in the mouth like promises that can no longer be kept – tasted, then taken away. They are but ghosts from a feast remembered.

Yes, the world shrinks and constricts. It allows small room for resistance. This disease shows few mercies to those whom it seeks to partner. There are no bargains. The odds tilt sideways until every card is in the hands of the enemy, and its opponent’s hands can hold nothing at all. Not even empty air.

Yet the man remains; the woman holds on. They discover new ways to communicate, plan, and dream. They don’t abandon themselves, nor do they expect the rest of us to give up on them. We can’t always control what changes us, or deflect its momentum, not even a little. They already know this. We stand before them in awe, wondering whether we could face their fate and remain unbroken by it – brilliant and brave and somehow ageless. Printed immortal on the firmament, like the tracery of a comet that has passed but not entirely vanished.

For they are resolute, even when there are no voices left. As we watch, they quietly rise and shake the stars.

David Tate with Cash

My husband, David, diagnosed with ALS in 2014 …