Santo's Story
SANTO’S STORY


    The hardest part of this journey (a loved one being diagnosed with ALS) is seeing my wife of 21 years facing this truly terrible disease so stoically and courageously .She is my hero. I am sure that I couldn’t do it, Brenda has so much faith and hope that a cure will be found or that the diagnosis was wrong, that at times I find my self believing and doubting myself and the doctors.
Everyday I see a little bit of this cruel disease take some of Brenda’s body away. I am comforted by the fact that ALS cant take her strong sprit and hope that Brenda will always be around me. I am truly blessed and proud of Brenda.

    This Journey started in Sept. of 1999,Brenda was taking flamenco dancing and she sprained her left ankle. Brenda believed that she could heal her self by alternative medicine  (massage, Chiropractic, vitamins etc.) She wasn’t getting any results so Brenda tried the conventional route, doctors, physiotherapy etc.  Time went by and Brenda kept getting worse.

By Christmas she was walking with my cane and the doctor finally refferred her to a neureoligist. By this time it was a struggle for Brenda to even walk. It broke my heart to see Brenda in this condition and trying so hard to be normal. I felt there was something awful happening  with her body. The specialist did his test and wrongly diagnosed progressive Multiple Sclerosis January of 1999.

Of course we where devastated and asked for a second opinion.

We went to my neurologlist and he looked at her symptoms with great interest, and Brenda was sent for a EMG.
The EMG was done (at this time Brenda was using a walker)  the Dr. said quiet bluntly and matter of facttly  to Brenda he thought it was ALS (more commonly known as Lou  Gehrig’s disease .She didn’t believe the death sentence and refused to accept it.

Our drive home from the EMG was quiet. Big  crocidile tears ran down my face,I was so heart broken.
In true Brenda fashion she picked up the fallen pieces of my heart and said convincingly that she didn’t have ALS.
The doctor was wrong and we would  prove him wrong .We had the follow up test (EMG) dated for June 10 1999. We spent most of our time going to appointments to try and fix Brenda’s dying body. From. Chiropractic adjustments, .homeopathic remedies, to Chinese herbs and  naturopathic acupuncture .We would travel for two hours  by car to get to the acupuncture sessions , and we would go two to three times a week , climbing  two flights of stairs to get  inside. That procedure of walking up the stairs took at least a half an hour each way. I was also having acupunture for my nureological problem (Familial Spastic Paraparesis).
Brenda and I would lie side by side with needles sticking out of us. We had fun going and Brenda was so happy to be there. (This doctor.claimed to have helped people afflicted with ALS before)

By the end of May It was getting too hard and dangerous to go up those stairs, and much to Brenda’s protest we had to give up going to see the acupuncturist. At this time Brenda was using a wheel chair .The chair was a hard thing for Brenda to accept, but it did liberate her to an extent ,it gave her freedom to move.

It was her 52nd birthday and we found ourselves at one of our favourite places in the Rocky Mountains by the mighty Sheep River. THIS WAS THE REAL WORLD, A SACRED COMMODITY. Brenda enjoyed this outing into this beautifull world of ours.

Later we sold our house of 7 years and moved into a bungalow with wheelchair accessibility. This transition was harder on Brenda than it was for me. My thoughts were if this has to be done then it has to be done. 
That’s when we stared having government assisted home care. They gave us a nurse, physiotherapist and caregivers  for one hour in morning, noon and bed time. We never knew who would come to our home to care for Brenda. Our door was always open.
I started to feel the stress of being the bread winner, cook, house keeper, gardener, and MAJOR CARE GIVER. Taking care of Brenda was hard work (giving baths, feeding  her, grocery shopping etc.)
Foolishly I thought I could keep going at this pace forever. My mantra became “One day at a time.”

At the time I needed Brenda the most, she was dealing with much bigger issues .I did not want to burden her with all of my struggles.

I was starting to feel like a stranger in our own home, with all the care givers and the strain of being the major care giver. I am a very private person so it was hard for me to relax, it seemed like I was always  needed for something.

June 10,1999 we were at the hospital (Brenda’s sister Jennifer was here from Ontario at the time) The EMG from a different neurologolist  found  what we all dreaded to hear. He was 99% sure it was ALS.

Jennifer left a week later and we hired Bev Bews a private care giver, this took some of the responsibility for caregiving off of me. I was totally  grateful for this respite.

The financial strain was starting to get to me. Brenda wanted to go to Victoria (her favourite city) Andrea and Tara our daughters were living there.) We went near the end of July 1999.
I am glad we got to go to Victoria and create great memories like viewing the beaches, going for picnis and long walks, a surprise string trio during an at home sushi dinner, Buchart Gardens, and our first wheelchair airplane ride. 


TO BE CONTINUED…
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