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What I’ve learned a year after diagnosis

What I’ve learned a year after diagnosis

On January 15th, 2019 I was sitting on a balcony, on a boat off the coast of Guatemala when it occurred to me that it was a year to the day since my diagnosis. From a cold January morning where my life was turned upside down to the steamy heat & the salty wind of the west coast; a lot had happened in 365 days.

A year previously I had taken a cab from work to meet with my neurologist. Thinking I’d just pop out for an hour or so, I had left all my stuff on my desk, including my lunch. Mr. Tucker – who in the two years of medical drama had never missed one of my medical appointments – had an urgent call he had to take, so he didn’t come with me. Naturally, that would be the day where I received the worst news. After I left the appointment, I did two things: I emailed work and told them I wouldn’t be back that day, and I called Mr. Tucker to come pick me up as soon as he could. I managed to keep the appearance of normal until I got into the car and when I did, I exploded into a heap of hysterical tears. It was really bleak.

For the next month I had appointment after appointment. I had an EMG to rule out lower motor neuron activity (aka ALS) and another MRI to look specifically at my upper motor neurons. I went to the ALS clinic every Monday for about a month to visit with specialist-after-specialist: physiatrist, nurse, occupational health and safety, social worker, speech language pathologist, respiratory tech, physiologist, and dietician. It was a whirlwind of specialists who basically just treated me like I was dying. At one point I said, “Well I am going to do anything in my power to make sure I don’t get worse,” one of the above-mentioned specialists looked me in the eye and said, “Don’t bother, there is nothing you can do.”

I’d like to be able to say that in this part of the story I rallied and was inspired to change & that I did a complete overhaul of my life. The reality is that I vacillated between a staggering array of emotional states and mostly I was just tired, depressed, and miserable. Because I have an aptitude for bureaucracy (worst super power ever, look for my movie, never) and because we had just moved houses and had a multitude of bills to pay, I managed to navigate sickness employment insurance benefits, my private disability benefits, government disability benefits and all the HR requirements at work (with the help of my amazing bosses). This sustained us financially which is amazing considering disability often sinks families into debt.

Over time however, things did get better. I spent a lot of time on my couch reading books about neurological conditions and people who recovered from/plateaued horrible illnesses from cancer to Multiple Sclerosis. I spent days scanning medical articles looking for hope that there were options for my incredibly rare neurological condition. I discussed options with my neurologist and have tried different treatments (research project of one subject – me) and told myself I would try anything that had even a modicum of research behind it. I joined Patients Like Me and various online groups designed to connect people together. After all this, I can say I’ve learned a lot about what it’s like to live with a debilitating neurological condition, and I am still learning more each day. Here are the top things I feel are worth noting:

If you have the choice, take the job with better benefits and good bosses: My management team basically said, “We’ve got it, go home and process it.” They helped me with my paperwork for leave, Employment Insurance, and Disability Insurance. They had my back every step of the way and I will forever be grateful to them for their support. I wish every person who falls ill gets the kind of support I have had but I know it’s not often the reality.

Also, I worked somewhere where I could continue my extended health benefits and where I had disability insurance that covered 70% of my salary until I am 65 (or get better…or die). We know that at any given point that 20% of the population is suffering from a disability. Having disability insurance saved my family at a time where not having an income could have sunk us. Knowing what I know now, I would always choose the job with more supports both in management and in benefits. While I know my disease in particular is rare, becoming disabled (either temporarily or permanently) isn’t as rare as you’d think.

Marry well: It’s such a strange thing to say but I would say that 90% of my being able to cope with this diagnosis I owe to Mr. Tucker. While I always knew Mr. Tucker was perfect, it wasn’t until after joining a number of online groups I realized how horrible some spouses could be. Some people would fall and their partners would leave them there or their husbands/wives would resent them and leave. There were many stories of horrific treatment BUT there were also amazing stories of families who rallied and who were determined to tackle the diagnosis together. Dealing with horrible news is like a magnifying glass: it emphasizes the cracks that were already there.

Have a reason to wake up every day: some people go home after their diagnosis, sit down, and then never get up again. The age of onset for PLS is 50+ so being so young and having two kids who were 8 & 6 at the time I was diagnosed ensured that this was not an option for me. Eventually I hauled my ass off the couch & got back to living.

It’s easy to disconnect – stay connected: when I first got my diagnosis I was reeling and had so many moving parts to manage from medical to financial to social. I didn’t tell anyone except for work & close family until 4 months after my diagnosis because I wanted to make sure I was calm and that I had things organized (disability insurance, medical tests etc.). It was a fairly lonely period in my life because of this. Also, I knew one person in particular wouldn’t support me – and they didn’t. That’s fine. I mentally prepared for their eyerolls and snarky comments and focused on all the other strong supports I had in my life.

Once people knew, I did my best to continue to attend events and continued living my life as best as I could even though I had to modify some parts of it. I have the most amazing dragon boat team, for example, who patiently wait while my two amazing Sherpas Kate & Jay get me in and out of the boat. Because of them, I will continue to paddle as long as I can. The three of us also did dragon boat-specific crossfit all winter where they each took turns every week helping me with the exercises & the trainer modified them for me. Cultivate good friendships, they will see you through any storm.

Buy the best equipment you can afford: this advice I really got years ago from my friend Judy when we were discussing a recent optical purchase she had made. She had paid a lot for a pair of eyeglass frames she loved and when we were discussing how pricey they were, she said something I will never forget, “Look, I will wear these on my face every day for 2+ years, it’s important that I love them.” So I sought out the best carbon fibre made-to-measure sidearm crutches I could afford, and purchased a lightweight scooter that folds up like a robot for travel. I use these things to navigate the world, so buying cheap versions that don’t quite fit or that are a hassle to use is false economy. I consider myself very lucky to be able to make these choices.

Find a mentor (or group of people) like you:This is incredibly difficult when your diseases is super rare that >100 people in your country actually have it. Luckily, the ALS clinic did mention that there was a woman like me who had PLS for 15 years but no change in 8 years. I went home and found her within hours (all hail the power of the internet!). As it turns out, she is smart, hilarious, and fun to hang out with. She also received her diagnosis before they could really differentiate PLS and upper motor neuron-dominant ALS (the slower-moving type think: Stephen Hawking). She was told it was ALS and basically was sent home to die. Alas, she is the fighting type and questioned this and eventually got a diagnosis of PLS. She is still out there living her life, trying off-label drugs and keeping active. She inspired me to do the same and is an incredible model for not having to accept the finality of any decision.

Online groups can also be a source of info, which has led me to an exercise, supplement, and drug protocol that has changed my life exponentially. Luckily, I have a super supportive neurologist so if I bring him info about a drug trial or some research I have found, often he is willing to prescribe me the drugs (after he researches & we discuss the risks). When you have a rare disease, there is rarely any drugs or drug trials that apply to you so you research diseases that have similar degeneration and see if those drugs may help. Online groups have been an incredible place to seek out info and personal experiences.

Doctors don’t know everything but good ones will admit that: I am flabbergasted every time someone new joins one of the online groups and tells us what kind of advice they have received after their diagnosis. It varies so wildly that I am surprised anyone thinks they know anything at all! Find yourself professional support that encourages you to take charge of your health and who is open to exploring treatments that are outside the box. I am not talking about unproven and dangerous stem cell treatments in third world countries, here. I am talking about you doing some legwork through online groups & finding research on ePub that you can bring forward as evidence when you want to try a new protocol. Some doctors have even told their PLS patients that exercise is bad for them but one common thing amongst still-mobile long-term patients is that they keep moving as long as possible. Those that move are often still able to walk (mostly assisted) many years down the road. My neurologist and my GP are both supportive and I listen to them if they don’t feel like something is a good fit because we’ve established a trusting relationship.

Live your life now: I will be the first to admit that last year I went kind of nuts with the travel planning & buying a few things that could have waited. There was an urgency to live my life while I was still mobile and so I booked two trips: New Orleans in November, and then New York City for New Year’s Eve followed by a cruise down to Central America and through the Panama Canal ending in Los Angeles with four days in Venice Beach. A month later I was in the Bay area joining Mr. Tucker on a work trip. We have many friends in the area and so I had adventures in the Redwoods, driving down highway 1, and ending with a day in Napa Valley with Mr. Tucker. Naturally, these were incredibly expensive adventures but when you are facing down the loss of mobility, you make different decisions. In retrospect, I should have probably scaled back a bit given that I get so much more exhausted than an able-bodied person but I don’t regret having these experiences with friends and family.

Having said that, there are a million and one inexpensive ways to live life that don’t include throwing thousands of dollars at the problem and I am the first to admit I could have been more judicious in my spending. I just wasn’t last year, and frankly I don’t regret it.

Take your time, life has changed: I used to be a GOGOGO kind of person, always running from one activity to the next, enjoying every single adventure. If my bus came in 10 minutes, I would wait until 8 minutes out and then rush as fast as I could seeing if I could still catch it (often, I could). In fact, until recently I left many things until the last minute and often arrived late and exhausted. I packed life in YOLO style even though I was often exhausted. The consummate YES woman, I burned the candled at both ends which lead to the progression of my disease. Even after I was diagnosed, I failed to account for the fact that things just take longer now that I am slower. I’ve only recently begun to build in more time to get places and to say no to activities that would drain me, which says a lot about how long it’s taken me to accept my fate.

You aren’t weak for listening to your body: I look back and I am saddened by the way I abused my body over the years. I drank a lot of alcohol in my 20s and early 30s as well as stayed up late and didn’t eat as well as I could have. I pretty much lived my life in a state of perpetual exhaustion and because it was “normal” for me to ignore all the signs my body was sending, I am still learning how to navigate my energy levels today.

When I was diagnosed, my neurologist said, “with your job and responsibilities you have no energy left to give to yourself or your family.” He explained to me that unlike a normal person, everything I do takes twice as much energy, like I am doing everything fighting through quicksand, and that even a walk around the block for me was like running fast up a hill to everyone else. The stress in my personal and work life was the reason why my symptoms had flared up enough for me to finally notice and do something about it. It also explained why I was so depressed and cranky with those I loved and why I had nothing left to give anymore.

As I mentioned before, exercise is paramount to maintaining mobility but like a double-edged sword, exercise is also incredibly exhausting to me. So my daily exercise is almost always followed by a nap or else my voice gets hoarse and slurred and my muscles get weak. Even a short nap is like a power boost to my body. Learning that about myself was a huge A-HA moment that had been there all along but that I had ignored in the misguided attempt to pretend I was normal. Sometimes something as simple as having a crap diet for a few days or a bad night’s sleep throws my body into completely non-functional and I need to pay attention to those triggers and adjust my life around it.

You may want to retire early but having your career (and health!) taken from you hurts: Since I read Your Money or Your Life in my early 20s, I had always dreamed of quitting work while I was still young enough to enjoy life. There were fits and starts to this plan as I changed directions from running a small business to being a stay-at-home-parent to rejoining the corporate world as my kids got older. Still, having a good financial plan enabled us to weather many storms over the years. I am grateful I had those skills, especially last year as we lost a huge chunk of our income when I was suddenly off work.

Ironically, I had planned to retire at 45 and I guess at 42 I was officially retired – but through no plan of my own. LOLSOB, as the kids say.

For a long time I missed my job. I missed the people, I missed the creativity, I missed the vibrancy of being downtown. Mostly though, I missed having the CHOICE to walk away. Having that yanked from me was one of the biggest hurdles and for a long time I tried to devise ways to go back despite the fact my doctors told me that it wasn’t good for me. I have come to terms with it nearly a year and a half later but seeing a fun social media post from work, or seeing colleagues together at work function still kind of stings. It takes a long time to carve out a new life after one is taken from you and I am still working on it. I still miss the people but that is because they are awesome & I can catch up with them online, so not all is lost.

So welcome to the new blog. It will be a very similar format to Working Undertime except the change reflects my new reality as someone with a neurodegenerative disease. When I look back on it, it seems like a lifetime ago I wrote those posts on WUT, almost like I was a different person back then (and in many ways I was). This site will now be an intersection of disability, finances, travel, and living life as best as you can with what you have.

You would think that now that I have enough money from disability insurance to cover our bills that our financial story would be over – but you’d be wrong. Mr. Tucker continues to work a high stress job as a support manager for a high tech company which he has to balance between having a disabled wife, two school-aged children, a house to maintain, and his own hobbies. So our current financial goals include him becoming financially independent on his own over the next couple of years. We are staring down the reality that I could take a turn at any moment and he’d be left as the primary carer for me, which wouldn’t be possible with a job that requires many on call hours and working sometimes up to 16 hours a day. So, if anything, the urgency has ramped up. Also – and #diety forbid – if I pass away, there goes half of our monthly income. Sure, we have life insurance but having more money in the bank would ease the burden and help him transition to a new life without me.

So if you are new here, welcome to Post Morbus – latin for “after disease” (also it sounded better than Post Morbi). If you are coming over from Working Undertime, then I hope you enjoy this new trajectory. If you also suffer from a life-changing disability, I hope you also find comfort here. We experience the world in a much different way now and navigating that world can sometimes be difficult and demoralizing. There is still a lot of life left to live, though. I can’t change my situation but I can change how I respond to it. I have no interest in giving up just yet, and I hope you don’t either – no matter what challenges life is throwing at you.