ALS Clinic

Today is an important day. It will be my first visit to the ALS Clinic here in Calgary. The ALS Clinic is a multi-disciplinary clinic focused on the needs of ALS patients. It is a bit scary. The clinic consists of some 20 or so medical and other professionals. Their sole focus is helping me, and other ALS patients, with their journey through this disease.

The list of professionals is daunting to say the least. It includes the ALS Clinic Coordinator, five Neurologists, two Respirologists, a Palliative Care Physician, a Physical Medicine and Rehabilitation Specialist, a Clinical Neuropsychologist, a Social Work Counselor, the ALS Clinic Clerk, a Regional Case Manager, a Dental Hygienist, a Dietitian, a Speech Language Pathologist, an Occupational Therapist, a Physical Therapist, a Respiratory Therapist, a specialist for the Home Enteral Therapy Program
(they handle nutrition via G-Tube), a representative from ALS Society, and finally, a Research Nurse.

That's one hell of a list! Apparently they take this disease very seriously. I guess that is a good thing, but it is a bit daunting. All things being considered, I would rather be somewhere else, Peoria perhaps.

Since this is my first visit, the Clinic Coordinator suggests I could be meeting with more than 10 different people. My pulmonary function (lung function) will be tested at this and every future visit; the visits will happen every few months to start with and then will increase as I decrease. I will likely need a specialized blood test (arterial blood gases) along with some other tests.Then meetings with the therapists and psychologists and every other "ist" you could care to name. The only real plus of this setting is that most of the "ists" will come to me as opposed to me having to go to them.

This is a frightening experience, a saddening experience. It feels like a date with an executioner. I will go and they will tell me when they expect my life to end, their certainty like an actuary with a gun. They will describe what I can expect in terms of both quantity and quality of life. I will be measured and my body will be found wanting in the balance. They will tell me when they expect my legs to fail, my arms to fail, my speech to fail, my life to fail.

After giving me this news they will tell me how to manage the mechanics of what remains of this life and then they will do their best to attend to the spiritual damage of the day, helping me to plan for the next life.

Even though my brother Peter is coming with me, I face this alone. You see, each of us faces this destiny alone. Each of us must take these steps at some point. No matter how hard those who love you try to help, there is only one person, one spirit and one mind facing this - me.