Tuesday, February 5, 2019

Keep it going

It's February now, and I think it's time for an update.

I was able to do 10 weeks of physical therapy this winter, twice a week! I loved it. It felt good to have a regular "workout time" scheduled into my week, both mentally and physically. My joints ached a lot less, I found that I could just move easier, and I felt more purposeful in my self-care. I liked being able to see quantitative, measurable improvements, even if they were small, but I got excited when they were significant, too. We saw more significant progress in the first five weeks, and then it kind of leveled off over the last five weeks.

When I began, and I was told to kick my leg out or lift my arm, nothing happened. But as time went on the correct muscles began to respond - fire, activate, engage, whatever you want to call it - they were obeying my brain's command to "move" in a way they haven't done in years. So even though I still can't visibly kick or punch, my muscles are training themselves to do those things.

A couple new things I have noticed that I can do now: tear away Christmas present wrapping paper and slowly set down a mug of hot tea (instead of dropping it). A dear friend told me last week that she noticed that I am doing more things and my energy lasts longer throughout the day; I used to do less and get tired a lot faster. 

On January 28, I went in for my #8 treatment. I asked my neurologist if he thought I should continue with PT, and he said, "If you think it's helping, keep it going." In other words, "Whatever makes you happy." He didn't have a whole lot of new insights for me, and I was a little frustrated... I don't want to waste time, energy or resources on something like this. If I'm going to keep it up, I want to know it is making a difference - fast or slow, small or significant, it's about forward motion, people!

So, I called the Biogen representative, whom I affectionately refer to as "my drug guy." As usual, he was incredibly helpful. He said that the research has shown on-going significant progress in Spinraza patients. If you look at the graph at the bottom of this page, you'll see that the progress isn't steady and constant, though. There are times when it levels out or slows down and there are times when it makes big leaps. But no matter the rate, it's upward, forward, increasing progress. So my drug guy encouraged me that even though my progress in PT seemed to plateau after five weeks, that doesn't mean I've maxed out my potential; the potential for growth increases over time, just as the potential for deterioration increased over time before Spinraza.

I've decided to resume PT in March. I think what may happen is that I do a month of PT and take a month or two off, and then do another month... or something like that. I don't know for sure yet, I want to consult with my therapist. But on my "off" time, I don't want to lose momentum. At home in the mornings and evenings I'm doing the exercises I've learned, a little bit every day. I'm hoping to maintain what I've gained, and when I go back in March, we can add in some new things and slowly build it up.

I'm learning the value of steady continuity, in intentionally using muscles and pushing them a little further all the time. Keep it going!

Friday, November 2, 2018

Push, Pull, Squeeze, Hold

I've taken my Spinraza treatments to the next level!

In October I received dose #7, and realized I've been doing this for a year now. I feel more energetic and have longer-lasting stamina. I breathe well without being daily dependent on Albuterol. I have more movement in my fingers.

But I feel that there is a lot of unknown and untapped potential for my muscles. For 25 years, I've been wheelchair-bound, unable to bear weight, and slowly using my arms and legs less and less. Things are tight and small and weak, but I wonder if that could change now... What if I could open doors again? What if I could brush my own hair again? What if I could help with my own transfers? No one seems to know what is possible, so let's find out! It's a bit like Spider-Man, getting new superpowers and figuring out what he is capable of and how to use them...


I talked with my neurologist about this, and he agreed and prescribed physical therapy. Last week, I went to a consultation, and explained my situation to the PT. After an interview and exam, and copious note-taking, he seemed really excited to take on this challenge with me, and said we should start with 2 sessions a week for 8 weeks, and see what happens. So, after basically 25 years, I am back in PT!

My PT assigned me some homework to do in between sessions. These are muscle contraction exercises I can do in my chair or in bed, by myself. In our sessions so far, we've been doing isometric exercises, which means he will raise my arm or leg to a certain suspended level and tell me to try to hold it up, or at least support it as it slowly falls. We also do resistance exercises. It doesn't look like I'm doing anything, but it's hard work for me! Even though I'm not actually moving much, my heart rate goes up and I break into a sweat because I'm focusing on trying to get my muscles to respond - push my fists against inanimate objects, pull my foot up and down on the mat, squeeze my shoulder blades together, and hold... everything. I think the holding is the hardest part so far; with every exercise, I'm supposed to hold the position for 10 seconds. That tension is difficult and exhausting to maintain. (It feels like there's a life metaphor in there, doesn't it?)

I've completed 2 sessions (1 week) in the schedule now, and I'm sore. But I'm also excited and hopeful... I'll let you know how things process over the next few weeks!

Saturday, September 8, 2018

Creative and Courageous in Colorado

I recently took a trip that I have dreamed about for a while, and didn't think would ever actually happen. I took a train on an 18-hour ride from Chicago to Denver, and spent a few days in the spectacular mountains of Colorado! On my own, this would be impossible. But the Lord went with me, and he made it possible for two very dear friends to go with us too! 


My brother, Kevan, has taught me that anything is accessible when people are creative and courageous, and I definitely saw that demonstrated on this adventure. Here's some examples...


  • First of all, my dad is a true McGyver-genius. This summer, he adapted my portable "Connie lift" (which connects directly to the back of my chair and plugs in to run off the battery) so that it's made of two pieces of light and strong aluminum, making it even easier to pack, transport, and handle (in my preppy-looking golf club bag!). This baby went everywhere with us, and did all the lifting so the girls and I were safe and comfortable the whole time.
  • I have to give major kudos to the state of Colorado for their accessible restrooms and transportation. Big, private, family restrooms were basically everywhere, so I never had to cut our outings short to run back to the hotel multiple times a day. Family restrooms in public places are. the. BEST. (Take note, rest of America.)
  • The sleeper car attendants on the train were really wonderful and helpful, checking on me frequently, taking room-service meal orders, and providing three extra pillows just so I could comfortably sleep on the cot through the night (which I did... slept like a log!).
  • Then there's the waiter at Hard Rock Cafe in Denver... the silverware was too heavy and cumbersome for me to handle, and he couldn't find plasticware in their kitchen. I told him it was fine and I'd make it work, but he ran outside (in the rain) and across the street to get a plastic fork from another restaurant, and brought it back for me anyway.
  • Thank you to the National Parks for being wheelchair-friendly! There were paths I could take everywhere we went - paved or dirt, flat or hilly, but always scenic and beautiful. It was such a blessing to feel free to hike to summits, stroll along sparkling lakes, and climb red rocks! 



  • My favorite story from the trip was in Estes Park at the aerial tramway, which claimed to be accessible. True, there was a ramp, and true, there were no steps, but... to get from the ramp to the tramcar, there was a pretty hefty gap that my chair wouldn't cross. The two middle-aged ladies in charge did their best but realized the challenge was beyond them. Just when I thought they would say "Sorry, we can't do it," they looked at each other and both said, "We'll call Adrian." A couple minutes later, the tram came down the mountain toward us, and a young guy with sunglasses on could be seen, fists on hips like Superman, and a wide confident grin on his face. Adrian, I presume, I thought, amused but doubtful of his abilities. He came over and took a good look at all angles of my chair, asked a couple good questions about it (NOT including, "How fast does that thing go?") and tested some handholds. Then he gave me a few instructions on how to angle my wheels and a few explanations of what he was about to try, and before I could be scared, I was safely in the tramcar! Adrian is a magician! No, but he's an engineering student who, I'm convinced, has other disabled people in his life... this was clearly not his first attempt. He actually had adapted the platform at the top of the mountain so that it truly was more accessible. So we went to the top, got a coffee and some souvenirs, fed the chipmunks, and then let Adrian accompany us safely back to the bottom.


  • Last but definitely not least, Pam and Rachel - the most creative and courageous of all! They both were full of energy, strength, optimism, and hope through the whole journey. Nothing phased them. They constantly were paying attention to find the best places, views, and activities that we could do together, so that I forgot that I had a disability at all. On the last day, the only disappointment we faced was that we couldn't figure out how to navigate the mineral hotsprings spa that claimed to be accessible, but really wasn't at all. We'd been looking forward to it all week, but I tried to forget it and hide my disappointment. But these girls took me back to the hotel, ran a hot bath scented with lavender oil, turned on soothing music, and gave me some time to soak and relax. A perfect, peaceful end to a thrilling and adventurous week. Pam and Rachel were the perfect people to join me, and they made this a trip I will cherish forever. 



Whatever limits or challenges you face, remember that God is creative and courageous, and the master of tackling what seems impossible to us. When we put our hope in him and look for people around us who live out these aspects of his image, the possibilities are endless - and adventure awaits!