I love that my last neurologist had a quick start guide – no one remembers everything!
The last time I went to the ALS clinic was in 2021 when I was told that unlike the other patients, I only had to go in every two years. As the nurse walked me out that day, she said, “Wow! You are the only one who gets such a long time in between appointments. It’s because you are doing so well!” I felt pretty proud of that even though I do have to admit that the pandemic made me do less exercise than I did pre-pandemic.
So Mr. Tucker took me to my appointment this year (broken foot means I can’t drive) and he got to experience a day in the Rehabilitation Centre. In general, the ALS clinic has the following appointments they book for their patients:
• Physical Therapist
• Speech-Language Pathologist
• Clinical Dietitian
• Respiratory Therapist
• Nurse Coordinator
• Occupational Therapist
• Social Worker
• Physiatrist (& the nurse coordinator)
• Respiratory Therapist
Honestly, I don’t need the other appointments so I don’t book them. I probably could do without respiratory as well and may skip it next time. My numbers are generally consistent and so I may just stick with the basics until I need more care. My neurologist I typically see in this main office at another hospital but he goes to the ALS Clinic once a week so I booked in to see him when he was there because it made sense to batch the tasks. Oh, I also got word from my PLS mentor C.H. that she was in clinic that day, so we made plans to have a coffee afterwards.
When I first was diagnosed with PLS I caught wind that another woman in the area had lived with PLS for a long time and was still fairly healthy. Although they couldn’t tell me who she was due to privacy reasons, I tracked her down online within a few hours (thank you career in Social Media!). Since then, C.H. has become what I would call a Motor Neuron Disease mentor to me. She has given me a lot of great tips and tricks from her experience of living with PLS for over 20 years and I am grateful for her wise counsel! She taught me the basics of what I needed to know to move forward in this journey:
1 – Doctors will batch you in with ALS patients because PLS is so rare but our trajectories are very different.
2 – Our lack of Lower Motor Neuron involvement means that we can build muscle and via exercise we can keep our balance more on track with physiotherapy.
3 – There are off label drugs that can help PLS patients by increasing balance and lowering spasticity.
4 – Barring other things (like a broken hip from falls), we probably won’t die from PLS. We have normal life spans.
Unfortunately, because PLS is a diagnosis of exclusion, usually you can’t make a PLS diagnosis until around the 5-7 year mark since the onset of symptoms. That makes it very tricksy indeed. I am on year 10 now and I haven’t seen a decrease in ability over the past 4 or so years, which means I have probably plateaued. We hear rumours of people with PLS who have gone full ALS after 20+ years but from what I can tell, no first-hand accounts. However, there are many people who have had PLS for 20 to 30 years who also have varying degrees of disability so it seems that people don’t have a consistent trajectory for this disease.
My favourite part of the ALS clinic has to be the amazing therapy dog, Copain (Buddy or Pal, in French). He’s been going as long as I have and he is such a calm, happy boy. To be quite honest, it’s the #1 reason to attend the ALS clinic! LOOKIT WHAT A GOOD BOY HE IS! LOOKIT HIS LITTLE “VOLUNTEER” NAME TAG!
My least favourite part is respiratory. Aside from the mounds of wasteful plastic, I feel like as an asthmatic my breathing changes day-to-day and in the 5 years of going to the clinic, my breathing hasn’t changed so significantly to warrant future appointments. So the next time I go, I may just skip this as well and just speak to the two doctors and the nurse.
My second favourite part is seeing my neurologist, Dr. B. we discuss current studies I can enroll in, new drug trials taking place, now & exciting research that is happening and just generally chit chat about my overall wellbeing. Then he tests my reflexes and spasticity, gives me another boatload of prescriptions and then he sends me on my way. I do have his email address & that of his admin so if I ever need to make additional appointments or discuss any challenges, that is the way to get ahold of him. I ended up sending him a post-visit email on some exciting new research happening but I generally don’t bug them unless I need to.
While I do enjoy talking to the nurse (amazing woman, so supportive!) it’s taken awhile for the physiatrist to come around. On one hand, I don’t blame her: PLS is often conflated with ALS and so people tend to see us as just a slower version of ALS* and the jury is still out as to whether or not PLS is just a form of ALS or whether it is its own thing (I tend to suspect the latter, but I’m open). The first time I met the physiatrist she pretty much shot down any inklings I had of “getting better.” On the one hand, I get it: neuro patients don’t typically get better. On the other hand, progression for people like us is often incredibly slow and there *are* things we can do to maintain balance and muscle. I think that for a long time she fell into the camp who believed that we were just slow-moving ALS patients so the advice for them is to not expend any energy they don’t need to because it would increase muscle wasting & they need to conserve energy. But after the years of C.H. and I doing physio and maintaining mobility, I think the physiatrist has seen the benefits of exercise and balance work. That’s great because people diagnosed after us will get the benefit of not being told that there is nothing they can do and feel like they just have to go home to die.
A word on healthy living: absolutely live the healthiest that you can. Go for walks, reduce stress, eat well, maintain relationships and balance in your life. But know this: there are some things in the world that you can absolutely not change. Those of us in the west are obsessed with personal responsibility. We’ve been told by the culture at large that if we do all of the right things that we will die in our sleep peacefully at 100 and that we won’t suffer the limitations of people who live unhealthy lifestyles.
The reality is though that there are some things that are random and unknown. A personal responsibility culture dictates that if ONLY you had done something different, the outcome would have been different: you won’t be depressed if you have gratitude and meditate. You got hit by that car because you weren’t crossing the street in X way. You got MS because you don’t eat an (insert current diet du jour here). We put the onus on the disabled and sick after-the-fact to tease out what they did and where they went wrong. Sure, sometimes that is the case but often there are societal factors that also prevent people from making the right decisions.
Things are probably a mix of genetics, behaviour, environment and randomness but it’s hard to determine for any individual to figure out what is from column A, B, C or some random column that we don’t even know exists yet. It sells books, makes TikTok’s go viral and makes people feel better about their decision-making process but it’s a false god: some things we won’t ever know and so you better get used to living with the uncertainty if you want to move forward and live your one, wild life to the fullest. Otherwise you can go down the dark tunnel of obsession and make your diagnosis the only thing that defines you.
Quite frankly, in my mind my diagnosis the explanation as to why I have limitations but it isn’t the excuse as to why I am not living my life. Instead of focusing on what I can’t do, I focus on what I can still do. Sometimes I overshoot and pretend that I am able-bodied (see: my broken foot & wearing flip flops & broken their foot on uneven ground. The physiatrist even said to me, “Even an able-bodied idiot would have probably tripped over a tree root in flip-flops.” …wait a second..!) and I end up paying for it. But more often than not I discover that there is a work around and that I can still do the things I enjoy but with a modification.
At the end of my day at the ALS clinic, C.H. and I went outside afterwards and sat on a bench to catch up. Mr. Tucker brought us coffees and kindly waited for me off to the side as CH and I chatted about the past couple of years. C.H. at one point turned to me and said that the physiatrist had said to her, “You know, some patients we have here at the clinic are a FORCE,” and CH said that she laughed and laughed and knew that she had been absolutely talking about me. Maybe that is where I am sitting in the grand universe of things: I am – and I continue to be – A FORCE.
Til the end, friends.
Copain and I feel the same way about filling out the ALSFRS-R score paperwork
*FWIW: there is also upper-motor-dominant ALS, which we suspect Stephen Hawking had, which makes the waters even murkier. But pure PLS patients don’t typically have lower-motor-neuron involvement, which can be determined by an EMG…but not always! Aren’t brain diseases fun (note: not at all).