Understanding the support of friends and family
If you have ALS, you need help: Mind, body and soul. ALS is a progressive degenerative disease that impacts the nerves that manage all muscular controllable aspects of the human body. Well, almost all. ALS does not impact sexual feelings and the related abilities to be stimulated and active. Legs, arms, torso, chest and neck are all susceptible to weakness brought on by ALS. Weakness progresses differently in different people. The symptoms vary and change over time. Some persons may have a bulbar onset (http://www.nature.com/nrneurol/journal/v4/n7/full/ncpneuro0853.html) which essentially impacts their ability to swallow and breathe and talk. Many who are afflicted will drool or have their nose drip uncontrollably. Other persons like me may have the initial impact in a limb, an extremity. Sometimes ALS is referred to as locked-in syndrome. If you live long enough with ALS you will end up totally paralyzed, unable to speak but mentally intact. How do you remain happy, get normal things done and continue to care? You don’t without friends and family.
Family Christmas 2006 (the family is much bigger now)
Some people cannot handle their best friend being diseased and dying. If you have ALS or another terminal disease you need to accept this. I have seen my best friend, a person I loved and who loved me, less than a handful of times in the past three years. I hear that when my name is mentioned their eyes water. I know that they pray for me every day. My wife Vicki and I had great friends, a couple with whom we thought we would retire to sail and ski around the world. I’m now lucky to see them once a month. When I told them of the situation the husband of the couple threw-up. Other people become closer. I am lucky to have friends who make sure to see me at least every second week, a deacon from our church, past workmates and more. What do we talk about? All the normal things including news, hockey, basketball and baseball; stories about their kids or mine, stories of Vicki past; stories about their lives, my life. We even talk about the future.
Sailing Thousand Islands 2003
Two of my sisters have made sure to be available to provide support as needed including helping out with my kids who have recently entered their 20s and have experienced a lot of pain. I have many more friends who check in with me regularly, sending text messages, calling or reaching out on Facebook or other social media. They also know that in my limited capacity I am there for them. I am not alone and know that I can reach out at any time for help and the call will be answered. True friendship.
Boys farm weekend (first one that I missed)
My wife Vicki passed in August 2015 due to the spread of and physical destruction related to ovarian cancer. She was diagnosed in late 2013, almost 2 years after my ALS diagnosis. It was a heroic struggle and she had many friends who provided her with moral support while providing me with some much needed physical support. They cleaned house, did laundry, provided casseroles and other food, walked the dog and checked in regularly. The volunteers were friends from our current and previous neighborhood, parents from the local grade school where Vicki had volunteered, and friends from the local hockey community. I coached hockey beyond the point where I could skate and Vicki was the sort of person who would choose to play hockey over shopping or lunch with the ladies and the ladies now host a tournament in her honour (http://www.playlikevic.com).
Coaching Shannon and Nolan Peewee Hockey
So, previous to the cancer diagnosis, what were Vicki’s thoughts on providing me support? Vicki’s first reaction was: Who would take care of her when I am disabled or gone? She was angry with the future denied. Biking, sailing, running, tennis, golf, gourmet cuisine, parties and friends, the retirement of the future all gone. After that she told me that she did not sign up to be my caregiver. At that time I did not need any help but as the disease progressed help was needed, at first pulling on my pants, then showering, and then wiping my butt and so on. Eventually, I could not feed myself.
It is not unusual for a spouse to not want to be a caregiver. There are many cases where marriages have ended because of the massive additional stress and relationship pressures brought on by this or other terminal diseases. Despite her reservations, Vicki did provide tremendous support. She made sure that we moved from our two-story to a bungalow that would better suit our circumstances and planned the development of an addition, building an accessible bedroom and bathroom in support of my growing needs.
Draft Layout Bedroom and Bathroom
Friends do extraordinary things. Vicki was a volunteer at the local grade school for the many years our children were enrolled. After the volunteer group learned about her cancer and my ALS they organized a fundraising party in the Spring of 2015. When the group asked permission to organize the fundraiser and party I had mixed emotions. I liked to live under the radar and did not want to be a charity case. Thinking further, I understood the generosity and caring behind the offer, that people really wanted to help and that this was a way to help. Acceptance would be mutually beneficial. The volunteers reached out to many people in the community on our behalf. The outpouring of support and love was overwhelming. There were many, many people at the party from the local sports community, church, and school and they raised over $22,000 which helped pay for a portion of the accessible addition we put on our new bungalow. The timing of the party was serendipitous. The day after the party Vicki was admitted to the hospital where she spent the majority of her time until she passed.
From the “Care to be Irish” event (described below)
For many years Vicki and I hosted a St. Patrick’s Day party. Vicki designed and managed the invites, decorated the house, made the Irish cream whiskey, soda bread (in later years Shannon made the bread) and more. I bought the beer and made the stew. Although the party was held during March school break and often during the week on the actual day, we usually had a crowd. A group of friends, mostly from Vicki’s hockey community approached me in late 2015. Understanding that all the kids were attempting to pursue post secondary education away from home they offered to provide support and fundraising on the kid’s behalf. The idea was to pay the rent so that the kids would not need to work during the school year and possibly visit dear old dad a little more frequently. Remembering the success and warm feelings from the previous year’s party I agreed but asked that the focus be on developing a network for the kids.
I’m lucky to be here almost five years after the ALS diagnosis but cannot count on being here for another five as the kids become adults, get jobs, marry, have kids and such. A broad network of mentoring and support, a community of support would go a long way towards filling in the void. In March 2016 a large Irish themed party “Care to be Irish” was held with some friends driving over five hours to attend. An extensive network group was created, enough funds were raised to cover more than one year of rent for all of the kids and there are plans for future fund-raising activities. Here is the website: www.bsn24.com.
From the “Care to be Irish” event
Watching and supporting the kids becoming adults and having a fantastic community of family and friends who help provide that support has helped keep me positive and happy to be here: I am alive.