Parkinson's Disease

When we are diagnosed with a chronic or degenerative illness, there is often a grieving process that follows. The perception we are robbed of our normalcy and vitality is challenging. It throws into the ring two major issues. Firstly, it reinforces the stereotyped “normal” body versus the perceived defectiveness of an ill or disabled body. Secondly, it contests our right to grieve our loss. Loss implies we are incomplete, vulnerable, and unable to assimilate into the social ideal. Without a functioning body, this ideal becomes unattainable. This “loss” via illness is socially and politically defiant, possibly unsanctioned. When someone dies, the protocol is clear. When someone loses their job, position, or income, it is clear. When someone gets ill with a curable disease, when they recover, they reintegrated into society. But when someone loses function and continues to do so — well, that is a problem. Grieving when no one knows what the “rules” are is uncomfortable. Society struggles to know how to react and governments shun the perceived “burden.” Subsequently, post-diagnosis, we can be denied the support and time to grieve. This leads to an inability to express emotions such as rage and the mobilization that can arise from it. Chronic illness puts us in a holding pattern of suspended grief, anger, loss, and regret. Cultural stereotypes cluster, suffocating the expression of emotional vulnerability. As a result, we maintain the person we should be or used to be instead of the person we are now. By obfuscating our experience, we become the sole custodians of our loss. Our lives and relationships get reshaped by the social imperative for us to be humble, grateful, and unassertive. Frequently, I find myself reassuring others as if it is me who has brought them the bad news. What we need is to trust that others will not be overwhelmed with our feelings. But when your children or partner are struggling to come to terms with your condition, it is hard not to smile and say you are OK. If I laugh and make flippant acceptance of the disease, others will be more comfortable. The difficulty is this can lead to seeking refuge within. After any traumatic loss, we need to reorganize our life story. To encompass this new reality, we need to be allowed to release the ghost of the former self. Releasing our old selves can allow a new life narrative to be created, leading us to move forward. A societal change could make this process much more natural and empowering. Normalizing disability and illness would be a good start. More ramps, bigger loos, railings, etc. (seriously, how many able-bodied folks injure themselves on stairs every year?) These things can benefit everyone instead of capitalist “make money from every square inch” thinking. Speaking as someone with Parkinson’s, I can assure you that slow-moving through the world is far healthier. You have time to enjoy the scenery and chat with people when stopping to rest or wait for my body to co-operate. I’m not denying it’s incredibly challenging at times, but it doesn’t have to be made harder by an unforgiving society. It’s been four years since I was officially diagnosed. Am I still grieving? Oh, hell yeah. But I am growing into this new me. I’m learning how to adapt, how to be kind to myself, and how to swear loudly when Parkinson’s gets too much.

Days with chronic illness can be unpredictable. Days with Parkinson’s Disease (PD) can be just as unique and uncertain as the disease itself. In addition to the normal uncertainty of everyday life that we all must face, you also have the added “fun” of never quite knowing how you will feel. Most days, my treatment manages PD very well.  Sometimes, however, a conversation similar to this occurs: Care Partner/Friend: You doing okay today? You seem to be struggling a little? Me: I’m okay, just feeling a little ‘off’. Care Partner/Friend: Why are you having a rough day? Something happen? Me: I don’t know. It is just one of those ‘off’ days. One of the most frustrating aspects of Parkinson’s Disease is the uncertainty. It is often called the “snowflake disease” because each person with PD has a different experience. More than just dealing with tremors, people affected by PD can exhibit a range of symptoms including: anxiety, pain, cognitive issues, fatigue, sleep disorders, loss of smell, stiffness, slow movement, speech changes, and a range of other symptoms both seen and unseen by others. I am never quite sure what a day will hold or how I will feel, which makes planning and participating in the normal, everyday activities challenging. Sometimes you can be given medicine that helps you regain so much of what this disease has taken. For me, it occured after just a couple of days taking it, and I felt almost like my old self again. Able to move better, tremors controlled, stiffness gone, walking and speaking improved – I felt great. But, just as each person’s experience living with PD is different, so too, can daily differences in treatment effectiveness manifest themselves differently from person to person. The medication was immediately effective and helped me manage the symptoms of my PD. However, there was one catch: I had to stick to a regiment of pills, taken throughout the day, and over time, these doses would most likely need to be increased and adjusted because the medication would gradually lose its effectiveness. In addition to this, how well the medication managed my PD symptoms varied from day to day. Sometimes it would not work, and other times it wouldn’t work as well or as long. But when would these times come? How would I know how I would feel from day to day? It turns out these times would be as unpredictable as the disease itself. I refer to these times when my symptoms aren’t as well-managed as “off times” or “off periods.” Off times can occur for a multitude of reasons: Missing a dose of your medication Taking a dose too late Taking medication with certain foods Fatigue Stress How long you’ve had PD Or for some reason you are not even aware of These off times are unpredictable, can come on with little or no warning, and their unexpected nature can be very frustrating for those battling an already unpredictable disease. In addition to this, these off times can manifest in a multitude of physical, mental, and emotional ways from tremors, to stiffness, to brain fog, to balance and speech issues. Just like every person who has PD has a different combination of symptoms, off times manifest differently in different people, and each time, it could be a little different. Honestly, I was not even familiar with off periods when I was first diagnosed and could not understand why I was feeling better some days and not others. This led to some frustration, anxiety, and confusion, and I wish I had known to look out for off times and their causes sooner. Knowing about this definitely would have helped me understand and prepare better for this journey. These off periods are not just hard for the patients; they can also be challenging for care partners and those surrounding us. Since symptoms often occur unexpectedly, individuals with PD might not even know from minute to minute what they can and cannot do. Those surrounding this person can be just as frustrated as those battling this disease, and it can be hard for them to understand why you can’t do an activity now that you could earlier in the day. For each of us, it is important to educate and  advocate for ourselves. You can start by keeping a log of what your day is like and note when these off periods occur. Talk to your doctor, and work with them to find an adjustment or dose that will help limit these times when you are more symptomatic. Also, give yourself the freedom and grace to stop, rest, and take a break while you give your body and the medication time to “catch up”. Yes, medication can be a wonder and a life-line that has helped us live better with this very challenging and unpredictable condition. Unfortunately, just like the symptoms of this disease, it is impossible to totally eliminate off times, but with the right communication and treatment, you may just be able to negate or greatly reduce these frustrating periods.