April 2022 – A Life with multiple sclerosis

Magnolia Flowers

Last Saturday was exactly 2 months since I returned home. My treatment cohort gathered for our monthly zoom to catch up on how everyone is doing post treatment, which for the most part is really well. We agree that we are done with the Groundhog Day life that is our current isolation and hyper immune protection posture. And everyone is craving salad.

I have continued my process of weaning off baclofen since my post two weeks ago. There have been rough days in these last few weeks; intense moments of rebound spasticity, usually in the evenings, and a lot of big mood swings. I am currently at 15 mg per day, down from 60 mg per day.

I have been experimenting with different strains, doses, and timing of edible cannabis to reduce spasticity and over the last couple of days I seem to have gotten it dialed in. My research pointed me to any product that has a 1:1 ratio of THC to CBD. I have found a couple of RSO (Rick Simpson oil) strains that work, “sour tsunami” and “critical mass”. I have also had luck with an RSO strain called “Milky Way” which is very high in CBG and only a small amount of THC. Oddly, this strain makes me feel the most “high” so I use it less. 1:1 gummies, half of one every 2.5-3 hours, are also a winner.

My day-to-day routine of physical therapy, occupational therapy, MSGym, and meditation is ongoing and I’ve remained consistent. I feel like I’m dialing it in over time, and I plan to meet with my physical therapist next month to refine the plan.

If I had written this post three days ago, as I intended, I would’ve been writing about darkness and struggle. The last couple of days seem to have found a balance, both physically and emotionally, leaving me more connected to a hopeful and strong recovery. The darkness and struggle will likely return with the next baclofen dosage drop, but I now understand it better and can ride it out more easily.

Mobility/Walking/Legs

My mobility/walking/legs have been all over the place this last month. With weaning off baclofen, I’ve experienced some of the most intense spasticity occurrences I’ve ever had. Many nights my right leg spasticity will pull in opposing directions. My leg will involuntarily pull up into a full marching step at the same time it is doing everything it possibly can to stay straight. The pulling up wins, but it feels like it’s causing a little bit of damage in the process.

When my spasticity is strong walking is almost impossible and it can feel like backward progress. As I’ve gotten better at getting spasticity under control with cannabis, I am beginning to feel the growing and strengthening capacity and competence of my legs. As I’ve tapered off baclofen, I’ve had moments of feeling viscerally connected to my legs in a very functional way and they seem more able to take in information and gain strength, like they were returned to me and I didn’t even know they had been lost.

I took a video of my walking a couple of days ago when my walking felt spastic and stiff and I decided to make a video again today to reflect how much stronger it has been feeling. Fluctuations are going to be something I have to get used to, there are going to be rough days and days where I feel strong and I cannot get attached to either.

Hip pain is the other ongoing issue I want to track in this section. I have a lot of pain in my hips. I’ve had sharp pain down my left lateral hamstring for close to 10 years and more recently of lot of hip pain in the sacral area wrapping around the outside of the hip joints. I have seen a cacophony of specialists to try and resolve this. Imaging doesn’t show any structural problems. The conclusion of everyone I’ve seen so far believes it to be muscle/tendon/ligament pain. Locked up, frozen hip structures is incredibly common with MS when legs and walking are impacted. As I do more physical therapy exercises to get my hip joints and hip mechanism working again, the more pain I’ve developed. Sometimes I think it is the pain one goes through when beginning to use muscles that have not been working for a long time. With this belief system my logic is that the stronger I get the more the pain will dissipate. And that may be true. Other times I think it is the pain of something that is torn or broken, and nobody has found it yet. With this belief system I worry that I’m doing more damage than good.

If this truly is something that will dissipate as I get stronger, that doesn’t mean it will be fast and I would love to find a way to do both, get stronger/keep moving/ make my hips work and decrease pain while doing that. Pain and gaining strength don’t work well together.

Arm/Hand/Writing

This is an area where I have put less than ideal attention. I don’t do my arm exercises as often as would be beneficial, though I am doing the more that I had been, so it’s a start.

I’ve been trying to teach my right hand how to be a competent hand writer again. I decided to try a method of learning a specific “font” where I work by tracing and then practicing – a very humbling process. I would say as far as this month goes that I am holding steady on hand/arm function. Can’t tell that I’ve gained any meaningful ground, but I also don’t feel like I’ve lost any. As a side note, I’ve also been trying to play ukulele. Surprisingly I am finding this very fun even though I suck and will likely suck for a very long time.

Handwriting Font

Fatigue/Energy

I continue to be MS fatigue free. I get tired and I run out of leg endurance for movement/walking/exercise, but I am not completely wiped out before I even start the day. This is a huge win and continues to inspire me to believe that healing is possible. If treatment had an impact here, I have to believe it made a bigger difference than that.

Bladder

Pretty stable here as well. I have a neurologist appointment set up for the beginning of May where I hope I will have more clear answers. As I mentioned before, the retention side of my bladder issues continues to not be an issue anymore. I still have urgency and frequency, but I now know that my bladder and peacefully which reduces the risk for urinary tract actions, a really big deal. I continue to track daily to see if there’s any pattern or change.

Bowel Function

Another win. At this point, bowel function is totally normal, no issues.

Hair Growth

Hair has been stubborn to start its rebirth. About a week ago we did another shave as the first growth tends to be pretty weird and patchy. We may decide to shave it one more time to help the new growth be as thick and plush as possible, will see with this growth does before we decide. For now, I’m still bald.

Bald Head 1

Bald Head 2

The Long Game

Well, I still have MS. Not that it was ever supposed to go away, but there is a part of me, and probably a part of every person who undergoes HSCT, that held on to a glimmer of a possibility that I would get home and miraculously everything would disappear, return to the before MS reality, be the one-in-a-million miracle case. To be honest, every morning there is this time between waking and moving where it feels entirely possible that movement will be “normal” – like waking up from a dream. I will swing my legs over the bed and be strong and stable. I will reach for something with my right arm and easily grab hold. This hopefulness is essential even if it is devastating.

The first few weeks that I was home I was surprised at how normal I felt, not that much different from how I felt before I left. I was thankful to have more energy, not need to sleep all day, and feel motivation to do things. Now, the long game is settling in. I still have more energy than before treatment and I still am motivated to do things, but the novelty has worn off. In addition, these first months of intense carefulness with infection risk comes coupled with isolation and loneliness. By necessity I am by myself a lot which leaves too much time inside my own head.

Other than my subjective experience, I won’t know if HSCT “worked” to halt my disease progression. And I won’t know, even subjectively, for one-two years. I have chosen to act as if it worked which feels like the only way to move forward. Therefore, my daily “job” is the tediously slow work of building new neuroplastic pathways for better mobility and function. This job doesn’t have coworkers or a water cooler culture. It is very solitary. And I’m not gonna lie, it isn’t fun. Each movement I practice is hard and I find myself in a resistance-acceptance-resistance cycle. I do some exercises, then distract myself with some other task, or game on my phone, or YouTube video, then knuckle down again for the next round of exercises. Progress is almost imperceptible, but it is happening enough that I continue. I have to remind myself all of the time why I do this, why it matters. Being active in the outdoors with people I love is my biggest motivation. And, as sappy as it sounds, the possibility of being an active grandparent is a motivator that brings tears to my eyes every time I think about it (no pressure on Kira to ever have children!)

Identity

Ironically, my reality before I left for HSCT is still my reality now that I’m back. Over the last 5-6 years as my body has changed and my ability to move has become more challenging, my world has become smaller – closer to home. Simple ways to connect with others, “hey, let’s go for a walk!”, “Let’s go hiking this weekend!”, “Let’s go to the beach for sunset!”, “It would be fun to cook dinner together!”, “There is a fun (band, comedian, play, etc) coming to town and I’d love to go with you!” are not so simple when movement requires a mobility device and walking from my house to the car is a significant undertaking. I try hard to focus on what I can do, but there is a cold hard reality to what I can’t do that can’t be ignored. An unintended side effect of the pandemic, and our society-wide need to retreat, was that it made the lives of everyone else more like mine, if even for a little while.

With this reality, I keep bumping up against questions of identity, meaning, purpose. How do I connect? How do I contribute? How do I play? How do I build something? How do I explore? How do I have fun? How do I navigate all of this and not have a morose pity party?

I am wanting ways to answer these questions that don’t involve a huge amount of effort or hard work and it honestly seems like a contradiction in concepts. Getting out of bed in the morning is work, taking a shower is effort, my physical therapy, occupational therapy, sitting up in a chair, and handwriting practice all ask me to push hard both physically and emotionally with barely perceptible results. Once again, it is all a leap of faith. All the work I do to hold onto and try to regain mobility marinates in my ability to hold hope and optimism.

I want to find ways to play and have fun that don’t ask me to work hard, I want relief and respite from work. However, everything I think of has a learning curve, a challenge that requires effort and work. Learn to play ukulele? Explore art making? Learn a new language? Read a bunch of enriching books? Write a book? I am searching for something that metaphorically feels like falling into fluffy clouds made of laughing gas. It’s a work in progress. Somewhere in there is a mindset shift where the effort and work along the way are fun in their own right.

To Baclofen or Not to Baclofen

The last couple of weeks has also been a brutal reminder of body and medicine chemistry. I have been on a medication called baclofen for several years now and it is never quite clear if it is really doing anything. Its purpose is to decrease spasticity, but it is very hard to tell how effective it is. Spasticity has a natural fluctuation in intensity by itself – over the course of a single day or from one day to the next. Is my spasticity better because of baclofen or is it just a better day? Baclofen also has negative side effects – it causes fatigue and creates muscle weakness. A devil’s bargain, possibly less spasticity traded for weakness and loss of muscle. How am I to build strength, muscle, and endurance if I’m fighting against this medication?

Getting off baclofen is no small deal. You must go very slow because withdrawal symptoms are no joke. Baclofen withdrawal has been compared to withdrawing from benzodiazepines. Specifically, there is an emotional/mood impact that feels like intense depression and there is a strong likelihood of “rebound spasticity” which is a crippling exacerbation of MS spasticity. If a person weans off baclofen too fast, it can cause cardiac arrest.

I am not a patient person. At the beginning of last week, I decided I wanted to wean off baclofen to have a better understanding of my baseline spasticity without medication. Without doing due diligence research, I decided to cut my baclofen dose in half right out of the gate. I went from 20 mg three times per day to 10 mg three times per day. About two days into this process, I started to write this blog post and noticed that the world was a gray, nihilistic, teary landscape – I mostly scrapped that writing. Three days in the rebound spasticity kicked in like pissed-off wild horses and I could barely stand up.

Wild Horses

I did me a little research and quickly brought my dose back up to my usual and the world stabilized. As of this writing, I have started a more gradual baclofen taper because I really do want to know the state of my body without it; what is my baseline. I am all for having as little medication in my body as possible. Fingers crossed for better success this time around.

Month: April 2022

Post HSCT – Month 2 Symptoms Update