For this month’s blog we decided to take a different approach and get the first person perspective from someone living with Multiple Sclerosis (MS). Blair was one of Rebalance Rehab’s first clients and I think I can speak for the whole team in saying that he has touched our lives, and his presence has made us all re-evaluate what is important to us.
Below, Blair goes into details about living with MS, and how he manages to live his best life.
Q. To start, tell us a bit about yourself, age, where you were born and raised, what you did for work.
I was born in Duncan, BC and adopted by a couple who had no biological children. They eventually adopted another boy, my younger brother, and we grew up in Chilliwack. My mother was Ukrainian and I grew up with some of the foods and traditions associated with her culture; I can even understand some of the language, though I never became fluent myself.
I had several jobs after I joined the workforce, some of which were very physical. I worked in landscaping and in retail management. Eventually I got my CPA and started my own accounting business. My wife, Bernadene, ran a daycare out of our home and we were both self-employed for many years. We were never able to have children of our own. My wife passed away due to breast cancer in January of 2017.
Q. How old were you when you were first diagnosed with MS and how long did it take you to be diagnosed?
I first displayed symptoms after returning from my honeymoon. I had just married my high school sweetheart, Bernadene. I was 33. It took about three years to get to an official diagnosis of multiple sclerosis; at that point I would have been 36.
Q. What symptoms were you experiencing that sent you to your doctor?
I initially went to my doctor when, upon returning from my honeymoon, I temporarily went partially blind in one eye, as well as colour blind. Looking back with the knowledge that I have now, I realize that I was probably symptomatic as early as my teen years. I had an unusual level of overall weakness and fatigue, as well as a lack of coordination, despite my first jobs being very physically involved.
Q. When did you have to start using the power chair and why?
2009, off and on. At that point I just used the chair when my legs were too fatigued to walk. I was actually still walking then, but with the support of a cane (used since 2007) or a walker (used since 2008). I kept that up until 2011, at which point I was no longer able to walk.
Q. What are your symptoms now and how do you manage them?
Currently I have no use of my legs or of my left arm, and declining use of my right arm, and I have diminished feeling from the waist down. Regular physiotherapy from Rebalance Rehab helps me to maintain and strengthen what function I have and prevents muscle contractures in my unused limbs. I have lived in a skilled nursing facility since 2015, and I have my personal care, grooming, and feeding attended to by other people because I am no longer able to do it myself. I use an electric wheelchair to get around and, as even my speech is declining, the greatest degree of independence is afforded to me by the assistive technology that I use.
My tablet computer allows me to send emails to people who might have difficulty understanding me speak, to monitor my finances, do my personal shopping online, access information and entertainment, and even to speak with the assistance of an app. I have plans to adapt my tablet to be controlled by a wheelchair-mounted sip and puff joystick as my hand function declines; this will also allow me to use my speech application more as I gradually lose my ability to vocalize.
I have frequent, painful muscle spasms. I also occasionally get double vision, for which I have an occluder (basically an eye patch) that attaches to a lens on my glasses. This prevents depth perception problems and resultant headaches from double vision while the problem corrects itself.
One of the symptoms that annoys me most is my extreme fatigue. I was an active and hard-working person who traveled for vacations, and now even talking too long can leave me tired enough to head for bed. It depends on the day, and the time of day, but I spend a lot of time planning my activities around my diminished energy levels.
I also love the sun, but these days it doesn’t love me back. One common symptom of MS is heat sensitivity. It isn’t well understood by the medical community yet why this happens, but if my body temperature increases beyond a certain point I can become unresponsive. It’s terrifying for me because mentally I am still “there,” but I cannot control my body, cannot communicate with others… I remember having an unresponsive episode when I was still in my own home. I had taken a hot shower, overheated, and fallen down. I couldn’t get up, couldn’t even call out to my wife for help. I have been taken to the hospital due to these unresponsive episodes, and I have to be careful about how hot I get in the summertime. I cannot stay in the sun longer than 20-30 minutes, and I have to use an air conditioner once it starts getting too hot indoors. I am also more sensitive to the cold, especially in my hands and feet.
As my ability to control the muscles around my mouth, throat, and lungs has declined (and, as a result, the muscle tone has decreased) I have had to make decisions about my diet. The nursing facility would have me eating pureed food at this point if I had not provided informed consent to receive cut up foods. According to my doctor, either option is about equally likely to cause me problems–potentially life-threatening ones, at that–so I am at the point where I need to make decisions based more on my quality of life. I do my best to cope with frequent aspiration and avoid choking–I eat slowly, change the position of my chair as needed; I have even engaged companion caregivers seven days a week now to provide me with the support that I need to eat most effectively and to get around, go out of the nursing facility, and generally have a life.
I have an unusual level of sensitivity in my skin, especially at the top of my head and the bottoms of my feet. That was actually part of how they diagnosed me: one of the tests for MS involves a metal ball being run from the bottom of your heel to the top of your foot to test sensitivity. Unusual things can cause me discomfort or pain, like clippers cutting my hair. Recently I’ve been experiencing constant, dull pain in my shoulders and upper spine which is aggravated by water being run over it in the bath. Unusual things can also relieve my pain; for whatever reason, Gold Bond Anti-itch Cream is effective against the shoulder pain. Is it something to do with how the nerves are misfiring, miscommunicating with my brain? I don’t know.
Q. What do you want people to know about MS?
It’s not communicable. Some people think that. (Of course, some people think that cancer is communicable.)
It’s difficult to encapsulate anyone’s experience with MS but my own in words because there are several million people with the disease and there are many manifestations of it in their combinations of symptoms. It’s called the “snowflake disease” because no two people have exactly the same ones.
From the MS Society of Canada webpage entitled “What is MS?” : “MS is currently classified as an autoimmune disease of the central nervous system (brain, spinal cord). The disease attacks the myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin. Myelin is necessary for the transmission of nerve impulses through nerve fibres. If damage to myelin is slight, nerve impulses travel with minor interruptions; however, if damage is substantial and if scar tissue replaces the myelin, nerve impulses may be completely disrupted, and the nerve fibres themselves can be damaged.
MS is unpredictable and can cause symptoms such as extreme fatigue, lack of coordination, weakness, tingling, impaired sensation, vision problems, bladder problems, cognitive impairment and mood changes. Its effects can be physical, emotional and financial. Currently there is no cure, but each day researchers are learning more about what causes MS and are zeroing in on ways to prevent it.
Q. What advice do you have for those who have been recently diagnosed with MS?
Keep living. Don’t give up just because you can’t do some of the things that you used to. Seek out other people with MS to share your journey with and find support from. There are groups that meet locally in person–particularly local chapters of the MS Society–and tons of groups online.
Also, don’t read too much online about MS or dwell too much in the possibilities of the future. To a certain degree, we have to make plans in life. But I was guilty of dwelling too much on the long-term possible outcomes and problems created by my disease. I spent so much time considering the “what ifs,” trying to plan for every contingency, and working to provide for my wife before I would no longer be able to, that I missed out on a lot of life and a lot of joy. I often failed to live in the moment and just be with the ones I loved most.
Try to stay positive. MS is a journey, not a race. There is no telling what the outcome will be or how long it will take. So just live your life and adapt where you have to as it happens.
Q. What does MS mean to you?
It means different things, depending on my mood and how my day is going. There are definitely emotional ups and downs that come with the experience. Beyond that, I would prefer to correspond privately with those who wish to know more.
Q. What kind of things do you enjoy doing now and why?
Reading, listening to music, eating good food, the feeling of the sun on my face, getting out to see a movie. I tend to take more time now to see and enjoy the little things than I used to.
Q. What are you most afraid of? What brings you a sense of comfort and peace?
I am most afraid of being totally incapacitated. MS can precede dementia for some people; it depends on what area of the brain it affects. So I also have a fear of losing my cognitive functions.
My comfort and peace come from God, praying to Him, and knowing that I will rejoin my wife in heaven someday.
Q. When were you happiest in life and why?
When I was first married to my wife I was most happy. I was with the love of my life. We traveled, we experienced new things together, and even though we knew what might come, the reality hadn’t set in yet. We were blissfully unaware of all that was ahead of us.
Q. What has become important to you now and why?
I am really close with my wife’s side of our family, and keeping in touch with them, visiting, supporting and being supported by them are very important to me. (I also have one younger brother who lives in the area; outside of him, most relatives on my side have passed away.)
I also find it useful to pray for everyone here in the care home that I live in. I pray regularly for staff and for residents. I want the people here to feel safe in the care that they receive and not distressed; I pray for the staff’s good health, and for them to have compassion when dealing with residents.
Q. Is there anything you regret or wish you had done differently?
I wish that I hadn’t worked so much, and that I had spent more time with my wife.
Q. Final words of wisdom or anything at all that you would like to say or want people to know?
MS is not the end. Most people live fulfilling lives, but with different challenges and limitations.
There is a saying dating back Roman times–and possibly further, as similar sentiments are expressed in the Hebrew Scriptures–which is often attributed to Roman statesman Cicero: Where there is life there is hope.
I have it tattooed on my arm. It’s placed such that I can always see it, to remind myself never to give up. There is always hope for tomorrow.
Finally, you are reading this and are newly diagnosed with, or otherwise affected by, MS, I am open to corresponding with people via email. Feel free to contact me.
We thank Blair for his time, his compassion and being willing to complete this interview. We truly appreciate and feel honored to work with him.
If you wish to donate or get involved with the MS Society of Canada, please click here.