Browsed by
Tag: PLS

Let’s go to the ALS clinic!

Let’s go to the ALS clinic!

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:

• Physiatrist
• Physical Therapist
• Speech-Language Pathologist
• Clinical Dietitian
• Respiratory Therapist
• Nurse Coordinator
• Occupational Therapist
• Social Worker
• Chaplain

I see:
• Physiatrist (& the nurse coordinator)
• Respiratory Therapist
• Neurologist

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).

It’s been a hot minute – what I am up to

It’s been a hot minute – what I am up to

WELP. The idea of writing consistently here this year as a New Year’s resolution didn’t happen. Still, I’ve not really spent a lot of time on social media this year and I have definitely kicked my facebook habit (and replaced about 50% of it with an Instagram habit – oops!). Of course, the pandemic is still out there pandemicking but the kids are back in school so that is nice. We had a great summer of outdoor socially distanced hangouts, and now we are settling in to have a lovely autumn full of fun fall activities. But first, maybe a roundup of what has happened in the past 6 months since I last wrote:

Cottaging on Manitoulin island: we have probably shut the door on camping/cottaging with the two other families. Since Sprout was 2, we’ve either Glamped in Quebec parks or we’ve rented cottages. This year we had a lovely week in Dominion Bay where the kids could run around, play games and go for long walks. My friend S did her yearly craft camp for the kids & there was woodburning, leaf painting & other projects completed. I mostly read, and we even headed out to an outdoor farmer’s market (a pandemic first for me!) where I bought cozy wool socks for me, rings made out of antique spoons for the kids, and a pepper grinder from a woodworker for Mr. Tucker.

Unfortunately, during the pandemic there was a run on cottage rentals and even though we tried to book for next year early this summer, there was really nothing to be had that wasn’t $3000 a week – a bit steep. Also, our kids are much older now: Sprout is going to be 12 next year and the oldest kids will be 16 and will probably have jobs. It’s been a good run but it’s time to move on. Not all is lost though! More below!

Gardening: this was our garden’s second year & like the first year we kind of took the “set it and forget it” approach. Still, we got a lot out of it despite the chaos and have learned that we can probably sow an early spring garden, a summer garden & a fall garden. We did end up sowing a fall garden but a little later than I would have liked so who knows what will happen? Despite the cold, the tomatoes are still producing and the basil is going strong. Heck, some of our herbs – like lavender, coriander & dill – have re-seeded and are producing again. Since our goal is to bring those herbs inside for wintering under grow lights, I am happy to see it!

Hopefully we will get some cool weather crops before the snow flies! Then we will pull the dying plants, lay on our home made compost and let the beds winter. Otherwise, we have garlic to plant for next year before the winter sets in.

    Canning, preserving & gleaning: we did most of the things we had done last year that we had enjoyed,

– Horseradish dill pickles
– Tomato sauce
– Spicy dilly beans
– Strawberry and raspberry jam
– Sundried tomatoes

    Some new things,

– Both dill and sweet mustard relish (made when our cucumbers turned yellow)
– Red onion and beetroot chutney
– Marinated eggplant

    Some boozy things,

– We made Nocino from friend’s black walnuts
– We made a bachelor’s jam for Winter Solstice/Yule
– We are now trying our hand at plum wine from our friend’s plums

I am going to do an entire post on all of the things we did & some recipes sometime soon. What’s notable though is what we didn’t do: salsa or tomatillo salsa. We really weren’t going through it as quickly as I thought we would, so we focused on tomato sauce instead.

Money Mondays: this is still going strong! We’ve done sessions on a bunch of things such as the Disability Tax Credit, had a guest speaker to do a presentation on wills, and next week I am doing one on budgets.

Health: the good news is that the ALS clinic told me that I am doing well enough that I only have to come in once every two years! The nurse told me that this was the first time she’s heard the doctor tell someone that so I am pretty proud. Still, I could be doing more work on my health to be quite honest.

– Mr. Tucker and I are taking long walks (I bought a yellow tricycle, which is what I usually take) weekdays. We grab the dogs in the morning, walk Sprout to the end of the street, then we walk the Bean to her bus stop & then we head down to the river for a longer walk (or just through the neighbourhood on busy mornings). It’s been really good for us both to be forced to get up, washed, dressed and out the door. Otherwise we just lounge around the house in our jammies.
– I plan to do #folktober next month to work on my fine motor skills with painting. I bought some nice watercolour paints and I need to encourage myself to use them. Wish me luck!
– I need to clean out my knitting basket to make it more user-friendly. The Sprout reminded me that I said I would teach them to knit and I still haven’t. So again, in the interest of my fine motor neuron skills (and keeping my promise) I should pull that out again.
– My vitamin regimen has made my cycle much better and that in turn has also helped my spasticity.
– I haven’t had alcohol since October 28th, 2020.
– My skin has been just awful so yesterday I was tested for a bunch of things (celiac, thyroid) and my GP is making me appointments with two dermatologists, so we will see how that will play out. I figure this may be an ongoing saga for awhile as appointments are sparse due to the pandemic.

Finances: shockingly, Mr. Tucker has made the decision to work longer in order to put more money into some house-related projects. This means we’ve eased up on our intense budget and instead we are buying more things that bring us joy. For example, we are trying to rehire our old housecleaner again as we’ve decided that our weekends are probably not best spent arguing with the kids over chores. They both know how to clean an entire house so we’ve done our job here. They’ll still have chores, just less of them.

I have also increased our a> grocery budget; and b> our pocket money. We are still saving at an amazing rate but we aren’t as intense as we were for most of this year. We hit our prepayment amount for our mortgage & will contribute to Mr. Tucker’s retirement accounts (but to a lesser degree).

Instead we are also going to…

Travel: both near and far. When we were on Manitoulin Island this summer we made the decision that if cottages were going to be $3000 a week that we would be better off booking a trip down south instead. So that is what we have done. We have tentatively booked a vacation to Jamaica next winter (covid willing!). We booked our flights & house rentals but we did manage to get good cancellation policies so we will see where the world is at come winter.

We also have decided to treat the kids & take them to Canada’s Wonderland for the Halloween Haunt. We ended up buying season passes with another family in the hopes of going back for a couple of days next summer as well.

I would like to also do more things close to home such as heading to various Halloween-themed (outdoor) events in our area. After a year and a half of being stuck at home, I am eager to spread my social wings!

So that is about it for changes around here. Mostly my days are spent reading and parenting & watching shows or playing games as a family. I think we’ve turned a corner on covid – at least in our area of the world – so I hope that stays steady. Overall, life is pretty good.

Sobriety

Sobriety

It happens as it usually does: a period of time where Mr. Tucker and I find ourselves drinking a lot of alcohol but enjoying it less and less. Our solution to that is usually a month of sobering up followed by some grandiose “falling off the wagon” as a holiday hits, friends come over, or it’s Friday. Rinse, repeat.

The pandemic has brought with it exploding alcohol sales. In the spring drinking just brought me anxiety but once the summer hit I was kicking back poolside, drink in hand. The seasons turned once again and by the fall I couldn’t get any sleep unless I had a drink or two. It wasn’t until October that Mr. Tucker and I realized that we were just drinking because it was habit and that neither of us was enjoying it all that much. So one day I turned to him and said, “Do you think we could quit drinking for an entire year?”

So on November 1st we completely stopped drinking alcohol for one entire year.

As creatures of habit I knew what our patterns were and I wanted to break them. I chose a year because it is probably the longest either of us has gone without a drink since we met (even pregnancy is only 9 months!). We also aren’t used to denying ourselves. Mr. Tucker and I are so incredibly compatible but that’s a bad thing if you are heading in the wrong direction. Also, Mr. Tucker is the worst at being the bad guy. Having a supportive partner is amazing but it also means that he sometimes enables my bad behaviour. For example, we will set a goal and say, try to not spend money because we are saving for something. Mr. Tucker will be great at not spending but as soon as I want to spend he takes it as his cue to go all-in and suddenly we are both spending and no closer to our shared goal.

With alcohol though, we have particular triggers. It’s as if you took the game of LIFE and made it into a drinking game. Rough day at work? DRINK! First day of spring? DRINK! Zoom call with friends? DRINK! But when you don’t have a plan aside from the very vague, “we’re not drinking right now,” cracking open a bottle of wine doesn’t seem like such a bad idea. So we crack open a bottle of wine and then a couple of days later we’re drinking two bottles…We’re stuck inside our old pattern again. So making a concrete goal and determining that we want to make it to a year made sense. It’s not open-ended so it’s harder to give in.

I will admit that quitting alcohol was not the only goal. Alcohol is also ridiculously expensive. In our youth we could drink whatever $5 special landed into our little hands but as you get older your tastes generally swing to more expensive brands. Our go-to wine was a regional wine that was on the low-end at $17 and even drinking one of these a night is a $119 a week. Where we live in Canada, there is no decent-tasting “two buck chuck” so you are looking at $400 a month. $400 that could be better spent somewhere else.

The other thing that really convinced me to give a long period of temperance a go is my health. I have often given up alcohol, done a lot of stretching, exercise & meditation, and made sure I my diet was well constructed. But I’ve never done all three at the same time. So I wanted to see if it would improve my mobility if I combined all of the healthy habits. As much as I never wanted to admit it: alcohol increases my spasticity & makes my balance worse. Not just in the “ha ha I am tipsy and can’t walk a straight line” way but in a way that lasts for days even after I’ve not had a drink for awhile. So that was my primary motivator.

Finally, I just didn’t want the kids seeing us drink everyday. Mr.Tucker and I have a saying and it’s, “we’re not moderation kind of people.” I can’t tell you how many times I have turned down “just one drink” at parties because I am driving. I know myself and I can’t just have one drink. It’s much easier for me to stay sober. So while I don’t want to make it sound like we were hammered every night (we weren’t) we did drink most nights of the week. Now that the kids are entering their tween years it seems even more pressing to model spending our evenings doing other things besides drinking (and spending time online but that’s another post).

So how has it gone? Pretty well, actually. We are two months in and neither of us think about it too much. Christmas was a bit difficult because of old habits but it helped that we weren’t hosting a large dinner this year. Being in a pandemic year helped a bit in that respect. For me the difficulty will lie in when the first really warm day of spring happens and when we open the pool this summer. I also feel like it will be easier by that time as well with 6 months behind us.

It helps that we are doing this for myriad reasons: health, money, parenting and life goals. When you look at the choice objectively it makes a lot of sense for our life to make this one change. I will say though, both Mr. Tucker and I – while constant drinkers – aren’t alcoholics. Obviously I don’t want to suggest that quitting alcohol is in any way easy if you have an addiction. If you do, please seek out professional help instead of trying to quit on your own. I know one person who passed away from complications due to alcohol addiction and it is a real, dangerous way to quit. Call your doctor or check out aa.org for more info.

What I’ve learned a year after diagnosis

What I’ve learned a year after diagnosis

Comments 0 Comment

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.