In its early stages, ALS is very difficult to diagnose because its symptoms are common to many other ailments. They can include tripping, dropping things, slurred speech, muscle cramping, weakness and twitching.  ALS strikes 6 per 100,000 most commonly between the ages of 40 to 70.

ALS was insidious with me too.  In October 2000, I went to a supper meeting. I was fine. Suddenly I lost my balance. I clung to a door. It hurt when friends passed by unaware that I desperately needed a hand.  Finally I found enough energy to reach for an arm. That person was bewildered. I had no outward signs of the dreaded disease.  I couldn't ask for help because tears were choking me.  I was embarrassed.   How I wished people would be more aware of others’ needs!  Paying attention to each other should be everybody's business, young and old.  It's an education that should begin at an early age. These thoughts suddenly rushed through my mind.

The main physical pain and discomforts due to ALS are cramps and helplessness to find more comfortable positions after hours of sitting or lying in bed. A great deal of pain in the back of my left thigh develops when I remain sitting.  Also, during the day, my feet may be ice cold whereas, at night, they're burning hot.

Choking happens more and more frequently and is very scary. When it's safe, I take a tiny sip of water and swallow with my head bent down. Drinking clears my throat and stops the coughing spell.

On May 31st, 2001, I became a participant in the nation wide study on Riluzole, as of then. A non-registered pill.  This pill doesn't cure the disease but is expected to improve the quality of life.  I may be one lucky victim where the progression of the disease has been slowed down. Data shows that the study drug has a very positive effect on ALS victims.  Prior to taking Riluzole and calcium, magnesium, quinine, baclofen and devil's claw I was often awakened by severe leg cramps to the extent that I was afraid to stretch my legs.

In June 2001, my left index began to stiffen and to curl on it. Dr Johnston, a bone specialist, straightened it under local aesthesis.  Occupational therapists provided splints.  Nothing helped. Now I have ten deformed fingers.  This keeps progressing.  I can no longer hold a pen.  I manage to eat with a teaspoon equipped with a foam sleeve to improve my grip on it but I still need help to feed myself.  My food has to be very soft.  A feeding tube will be the next step. In my present state of mind, I don't want one.

In February of this year, my neck muscles began to weaken.  I have a hard time to hold my head up.  This gives my caregivers trouble in feeding me with a spoon.  The strain required to hold my head up gives me pain in my upper back. This is often accompanied by headaches.  

Saskatchewan Health Care provided me with a manual and a motorized wheelchair in August 2001. Sask Ability people installed Saskpoles by my bed and bathtub. They're wedged securely between the ceiling and floor.  I hold on to the pole to lift myself up and then I back up to the toilet seat or to a bathtub transfer bench.  To get in bed my caregiver holds me up while I hold on to the Saskpole. Using a transfer sheet, (s)he turns me onto my left or my right side. A slippery fabric overlay on my bottom sheet makes it possible for me to turn over.  My nightgowns are also of slippery material.  Holding on to a  Saskpole mounted trapeze I slowly and with much effort manage to turn myself over without waking my husband. However, when I get tangled in the bed covers, I must ask him.  This may happen once or twice each night.

Crying and laughing uncontrollably are common and misunderstood symptoms of ALS. Washing my face with a warm wet face cloth, comfort foods and soothing words, distractions are ways to stop these outbursts I can control them much better now that I know I'll get help when they happen. Small incidents can trigger emotional outbursts.  When emotional needs are met, there's a 100% chance that everything else will follow.  When I'm happy, I sleep better, I look better, I’m more at peace, I need less care.

I enjoyed playing cards, reading, shopping, sewing, cooking dancing, traveling or anything a normal human being enjoys.  I'm now as helpless as a babe.  I spend hours on the computer.  My other pastime are watching television and reading.  I'm very fond of "Wheel of Fortune", watching biographies on the A & E, the History and Discovery channels, the news and Dr. Phil.

My speech has deteriorated mostly since August 2002. I try desperately to communicate.  When I fail to be understood, I speak louder, my voice breaks and I become agitated. I get very frustrated because I have to ask for many little things that are obvious to me but not so obvious to others.

On May 24th, 2002, I used  the walker for the  last time and  had to adopt the manual and powered wheelchairs in which I spend most of my days. This is a drastic change since March 4th, 2000 when I helped serve a fundraising supper for 120 people and then danced till 2:00 a.m. even the butterfly dance.

    In October 2001, I attended the national convention of the Senior Francophone of Canada at  St. Johns, NF. Surprise!  The airport was undergoing major repairs. I chose to negotiate the long stairs from the 737 to the tarmac.  The airport staff that looked after me made me feel like a princess.

My last trip in November 2001  was to Moncton, NB. for a forum on health.  It was a rush trip, a one and a half day session sandwiched between two flights.  It was a challenge for me.   I knew that this was to be my last major meeting.  The days that followed were an anticlimax.  I had to accept the fact that my voice and the use of my limbs were fading.

The first 18 months after my diagnosis, our world was chaos. The neurologist was 400 km away.  We sold our beautiful small-town home and moved  to a tiny apartment in the city of Saskatoon to get closer to our children and medical help. I felt guilty for causing so much trouble.  How could I sit back and watch the hustle and bustle moving requires?

I no longer travel in a car.  My outings are mainly for medical appointments and the only way to travel in my city is by special buses equipped with lifts for wheelchairs. It's an excellent and very affordable service limited to city limits. I'm very lucky that my dentist and doctor are both at the University Hospital where there is ample room to manoeuvre with my powered wheelchair.  I enjoy riding in the park adjacent to the apartments where I live.  Weather permitting I have my daily outing along several kilometres of paved paths with my 7-year old grandson.  It's delightful to see him chase butterflies or other insects with his net. How I wish I could hug him! Darn ALS!

In March 2002, I was in respite for 9 days at Oliver Lodge, and again for three weeks at the Sherbrooke Home.  I was under the excellent care of trained caregivers 24 hours a day.  Unfortunately, at Sherbrooke Home, 6 caregivers have 42 patients to attend to - getting them up, toileting them, washing and dressing, serving them breakfast.  What an overload!  Many times I needed to go to the bathroom but I had to wait my turn.  This forced training was truly hard but now, during the night, I use the commode only every six to eight hours. 

In the past year, we had moments of respite when my sister Claudette came three times from Vancouver for a few days at a time. My sister Monique from Montreal spent 12 days with me. They sewed, cooked, helped me to the bathroom, and comforted me.  My husband took the opportunity to visit his family, totally confident that I was in good hands. We keep in touch through the Internet. Other family members and good friends help in many ways. 

At a time when the medical care system is overloaded, there is a staff shortage and an increasing number of people needing full care; we should focus on raising awareness of people in need.  I notice that most people are willing to help, but they don't know how.  Some show embarrassment in the presence of others in physical need.  Before becoming a victim of a terminal disease I acted like most.  I didn't think I could be of any assistance to the handicapped.  In fact, I would have been ill at ease on how to offer help.  The physical handling of a patient requires some know how.

My husband and I have a different perception of our situation.  Our problem solving approach is likewise different.  This causes misunderstandings outbursts and bad feelings. Support groups 2 years ago would have saved many hardships. Now it's too late for me. I can't participate in support group discussions because my voice is gone and travel with all its preparations is too much of an onus. The Internet is an excellent form of mutual group support, which I use extensively in the comfort of my own home.

Home-based health care is ideal and a good part of it can be given by anyone, young and old.  Children can adjust footrests on a wheel chair, open doors, give a glass of water and answer the phone, etc.  I much prefer being cared for in my own home as long as my caregivers don't burn out.

An unfortunate thing about most apartments and homes is that many were built before homecare was the way to go.  Therefore, apartments are not adapted.  Hallways are too narrow for standard wheelchairs let alone powered ones.  Bathrooms were designed for space economy and beauty.  Fancy tub surrounds offer poor surfaces to fasten grab bars.  There is absolutely no room for lifts.

ALS leads to the failure of the respiratory system. Technology offers lightweight life support equipment such as ventilators.  In my present state of mind, I don't want one.  My husband suggests that I at least try one before making a decision.  It's too early to judge the quality of the time a ventilator can buy.