My ALS limb onset diagnosis came in June 2019. Symptoms started in the early spring of 2018. During my regular gym exercising my weightlifting protocol was subtly becoming more difficult, particularly exercises involving my legs. In the early summer of 2018 while speed walking on the gym track, suddenly my right foot was not working properly. Continuing that exercise in the normal fashion was not possible. At the time I blamed it on my new shoes.
During the course of 2018 balance issues became a problem and my right leg was not allowing me to walk normally. It became difficult using stairs and to stand up without leaning against a wall or using handrails.
We lived in a two storey house and decided to move to a bungalow. The move was made in September 2019.
As things progressed my family doctor did not have a diagnosis. She referred me to a neurologist. In January 2019 the neurologist performed nerve conduction tests, the results of which were normal. She arranged for an MRI which was done in May 2019. By this time my ability to walk needed a cane. More testing was done and then referral to the Kaye Clinic was made. My appointment was in June 2019. More nerve conduction testing was done and the result was the diagnosis of ALS. This was the beginning of my relationship with the neurologist and the Kaye Clinic. It was also at this point information about the ALS society was given to me. My registration with the society happened in July.
My wife and I have six grandchildren, two in Fort McMurray, two in Grande Prairie, and two in Saskatoon. It really goes without saying what our passion is, but we love our grandchildren. In order to see our grandchildren on a regular basis we traveled a lot, but that is what we liked to do. Also another passion of ours was visiting the Temple Garden Spa in Moose Jaw, Sask every year, twice a year .
My other passion was my work. My love of airplanes had me working at the airport of a diamond mine in the NWT. My primary role was directing aircraft landing at and taking off from the airport. Sometimes it could get busy because getting in and out the mine could only be done by air. There are no roads.
My diagnosis resulted in my last tour of duty at the mine in 2019. Our last visits to see our grandchildren, and visit to the Spa, were in the early winter of 2020. By this time climbing stairs and long drives were a challenge because of a lack of energy and poor mobility. Now our grandchildren visit us, unfortunately hampered by Covid, but they do the travelling now.
My new passion is playing scrabble on facebook with my mom, my sisters, my brother, sister-in-law, and other friends. Another passion is Facetime with my grandchildren when they are not visiting.
My wife has become my primary caregiver. Her role has become progressively more work. My oldest son initially moved to Edmonton to provide assistance. My three other sons are very supportive and as time has gone on they visit regularly to help out. My brother built a wheel chair ramp in my garage which now allows me to get out of the house because using stairs is not a possibility any more.
Support from the ALS Society has been phenomenal. The support provided has been beyond my expectations. They are always willing to discuss my issues and always ready to help resolve my issues. They have provided every piece of equipment needed to help me live my best. Wheelchair is my exclusive method of mobility now. The ALS society arranged for ceiling lift tracks installed in my living room, bathroom, and bedroom in order to get in and out of the wheelchair.
Another important thing they do is contact me regularly to see how I’m doing and offer more help if it’s needed. It has been outstanding service provided by outstanding and caring people. Something very special about them is the coordination of `coffee group’ meetings on zoom. This has allowed me to make contact with other people with the same condition. This is a positive aspect for my life and my deepest and sincerest thanks go out to the society.
Support also comes from AHS, AADL, and the Kaye Clinic. In early 2020 breathing while lying on my back was a challenge. The clinic arranged for me to get a BiPAP. The Kaye Clinic also stays in contact with me and offer any help if needed.
My own research into ALS led me to join two facebook groups, Whole body healing for ALS and ALS Natural Healing (Holistic) and an international online organization, HealingALS.org. This research also led me to develop a treatment plan. This plan includes a supplement protocol involving numerous supplements, a program involving acupuncture, physiotherapy, massage therapy, iv therapy, removing mercury fillings from my teeth and removing teeth that had root canals.
There is no way of knowing for sure if any of the plan has helped but it worth trying at least until the medical community, with their now exhaustive research around the world, can find a cure. Riluzole was part of my treatment plan for a year but uncomfortable side effects forced me to stop.
At the beginning of my diagnosis I was involved in a drug trial. The drug was pimozide.
My plan for the future is to never give up! My attitude is positive and I surround myself with positive people. Stress reduction is very important as well as elimination of anger.
I recently received this quote from a friend of mine. It is so appropriate.
“Our greatest weakness lies in giving up. The most certain way to succeed is always to try just one more time.” – Thomas Edison