Part 3 of a 4 part series.

By Jerry Gladman
Copyright 2003 Toronto Sun

Part 1: "I have ALS."
Part 2: "No I can't...Yes I can."
Part 4: Acceptance

Way back in the early shuffle steps of my dance with ALS, I asked the first neurologist if it turned out to be this awful disease what he could do for me. His response was chilling: "Not much."

Well maybe he couldn't do much, but as I eventually found out -- and am still finding out -- there are a whole bunch of people who can do a whole lot more than not much.

Not cure it. Not stop it. Not even impede its progress for any great length of time.

But they can now make life a whole lot more bearable -- and productive -- for ALS sufferers than they used to not so very long ago, when things were so bleak you just went home, wasted away and waited for death's mercy.

I began to find out just how much is available a week after I was diagnosed and made my first visit to one of the world's finest and safest havens for ALS folks, the Neuromuscular/ALS Clinic, located in the Centre for Independent Living at Sunnybrook Hospital.

I got more accomplished, more attention and more questions answered in three hours at the clinic than I did in the previous 11 months of just trying to find out what was wrong with me.

Doubly effective

First off, the name, Neuromuscular Clinic, is a bit of a misnomer. Most neuromuscular clinics are really dedicated to different muscular diseases such as muscular dystrophy. The Sunnybrook clinic, which opened in 1982, sees primarily ALS patients, which is a motor neuron disease.

"This clinic might see one patient a week with a muscular disease and 20 with ALS," says medical director Dr. Neil Cashman, a soft-spoken man who has been working in this field for 20 years.

"So it's really an accident of history that we're called that. There was a real need to provide comprehensive services for people with ALS."

The clinic was started by neurologist Dr. Marek Gawel and others, whose idea was a multi-disciplinarian setup with all the different experts required to treat ALS on site. All services and equipment -- everything from A to Z -- would be there.

In the beginning there was only a handful of patients, but numbers increased dramatically when others in the field realized the clinic provided co-ordinated services and quick access to specialized treatments. Its comprehensive setup quickly became a model for other similar clinics.

Not only is it the largest of its kind in Canada, but what makes it doubly effective is its close liaison with the Assistive Technology Clinic (funded by both the ALS Society and the provincial government), which provides a wide array of special technical aids for ALS use. (The talking computer and arm aids I use initiated with them.)

Clinic co-ordinator Myrna Moore, who has been involved with ALS patients for more than 13 years, says it's amazing the rate of speed and effectiveness at which ATC deals and accesses aids for patients.

"I always say where there is a twitch they will make or find a switch in order to access a computer, electric wheelchair or any kind of assistive device. These devices and equipment were not available years ago. People would become locked in."

She adds that technology plays a crucial role in the lives of ALS patients and has opened the world to them. "ALS people like to be in control and take charge of their lives and technology certainly enables them to do so."

Another huge plus for the clinic is getting early dibs on new medicines, which is why I was able to go on a new cocktail of drugs which only a few months ago was approved for patients.

The clinic is also known as a community outreach operation because of Myrna's unique position. She is able to interact with the person in the hospital as well as make home visits.

"I also liaise with the community agencies and act as a resource to them," she adds.

And she does a whole heck of a lot more.

My introductory session at the clinic was like being scooped up in a whirlwind. I didn't know what hit me.

See this nurse, then this doctor, then this therapist, then this doctor, get weighed, do this, try this.

Whew.

Mind you, that's only what it seemed like compared to the old hurry-up-and-wait regimen. There was very little waiting, but in truth each specialist gave me an inordinate amount of time. They all did thorough checkups, got my history down, explained everything in plain language and answered all my queries.

One of the very first things I learned was Drs. Gawel and Cashman don't run the clinic. They only think they do. The real big chiefs are secretary Olive Grozelle, who keeps all the balls in the air, and Myrna, the sergeant-major from heaven.

Just about every organization in the world has a Myrna. They come in different sizes and shapes and answer to different names. But they have one job -- keep everything running smoothly. They know where everything is, who should be where, who is where and who is who.

And if they don't know the answer to questions they know where to find them. They do it all quickly, efficiently and, hopefully, like Myrna, with a sweet smile.

And every visit she seems to have a special bonbon to hand out in a very quiet way. "Did you know about this program? Have you tried this treatment? I've got a great Web site for you. Oh don't bother with that. Try this. It's quicker." All of it designed to improve your lot in some small way.

And the best thing is, if you have a problem or a question at home, she's at the other end of the phone or an e-mail message. She returns calls as soon as possible and ditto with e-mails.

Now who wouldn't kill for that kind of service?

The first doctor I saw was Gawel, an affable fellow who appears to have little use for wasting time. Direct questions, direct answers and speedy action. It's a busy clinic and each patient has different needs.

By the time we were done, he handed me a prescription for three drugs -- Rilutek (Riluzole, the traditional ALS drug), Minocycline and Nimodipine. Ironically just that weekend I'd read a news release that this new cocktail -- designed to slow down the progress of the disease -- would be available to patients.

What I didn't know was its cost -- $1,300 a month (hey, it's expensive to stay alive.) Myrna asked if our medical plan would cover it? We didn't know, but she said if not there were certain other avenues we could follow to make sure we got the drugs.

She put us in touch with a service that did all the checking for us and they phoned the next day to tell us Norma's plan covered it in full. Myrna also called to find out if we were able to get the drugs without problems.

Within one day of getting the prescription, I was taking this precious medicine.

Next up were the team responsible for seeing to my speech difficulties -- Frances Ezerzer, a speech-language pathologist, and Tasneem Dharas, the augmentative aid technician.

They outfitted me with a talking computer and loaned it out to me for a lengthy period. (After that there was an annual fee to lease it.)

Dr. Peter Webster is the clinic's respirologist, an amazingly caring physician whose easy manner takes a lot of the sting out of the subject matter. Breathing difficulties are generally the final frontier in the disease and Webster wants to make sure you understand all the implications.

The usual cause of death is failure of the diaphragm muscles that control breathing. So specifically Webster talks about making a decision whether you want to be kept alive by a breathing tube, or ventilator, should you get pneumonia and are no longer able to breathe without assistance. My decision now is that I'd prefer not, so he emphasizes the need to make that crystal clear with family members.

"Occasionally we get some ALS people who wake up in hospital with a breathing tube and they get really ticked off," he said. "If you decide against it the hope is you will slip away peacefully in your sleep, as many ALS patients do."

Of course, the other danger is suffocation, which is when family members or patients change their mind. But once 911 is called, they are committed to put you on breathing apparatus. Anyone can change his or her mind, which is why Webster stresses the need for frank discussion.

He also wants patients who have eating issues to start thinking about a feeding tube (surgically implanted in the stomach) sooner rather than later, especially if you are losing weight. You can still eat normal meals, but they are supplemented by tube feeding, thereby minimizing weight loss and maintaining better health.

Before leaving, Myrna gave me a registration form for the ALS Society, and then made sure we visited the huge pharmacy at the entrance to the clinic which carries many supplies ALS patients might need (we bought eating utensils and a gizmo for turning keys), and other facilities which carry larger equipment.

In subsequent visits, I met with occupational therapist Jessica Comay, who arranged for arm devices to assist in typing and showed me some strategies for getting out of bed and low chairs.

The newest member of my team is Dr. Anthony Newall, a specialist in rehab services, who suggested part of my walking difficulties were likely caused by spasms, not just deterioration of muscles, and he prescribed medication that would loosen the muscles and make the Frankenstein Stroll less pronounced.

Few would doubt Dr. Gawel was on the right track when he recognized the need for such a facility way back when. But I can tell you this -- no matter how poorly I feel prior to going to the clinic, I always feel hugely uplifted when I leave.

Shortly after my first clinic visit last May, I received a package from the ALS Society, which contained a bible of sorts put out by the national office -- A Manual for People Living with ALS.

This is pure gold for it addresses every issue imaginable facing ALS patients and their families -- coping with the disease, managing symptoms and treatment, strategies of every nature to meet each problem and difficulty, assistive equipment, support groups, dealing with financial and legal considerations and matters of death and dying.

Rights and dignity

It's not an easy read. It deals with aspects of the disease in a very clear and concise manner and pulls no punches. But it is a must read, for once you have there are very few questions left unanswered. It's an essential aid for every ALS family.

The society was formed for three main purposes -- to provide services and equipment for persons living with ALS, to assist them and their families to manage the effects of the disease and to raise funds for research. Those three goals are the society's mission.

And until a cure is found for this disease, the Society strives to help provide a haven where people living with ALS may realize their full potential in a society that respects their rights and dignity.

In addition to the clinic and the Society there are a wide array of other community services available to us, including one of the more valuable -- Community Care Access Program. The desire of anyone with a serious disease is to remain at home as long as possible and it's groups like CCAP that make this possible.

Unfortunately, there just aren't enough services or money available to maintain everyone in their homes around the clock, but our new government could surely make a dent in this area by providing additional funding. How about it, Dalton? We needs ya'.

Actually, I now find myself turning to this service. Norma is an airline attendant and must go away for periods of time. My kids are in school. This means there will be times when I'm alone and get into all sorts of mischief.

Then, of course there other services such as hospice volunteer programs, palliative care settings and probably the most priceless commodity of all -- family/friend caregivers.

"Quite often they are the forgotten ones," says Myrna. "They are such a valuable entity."