I was nervous on the drive to my clinical trial appointment this morning. I had that nagging feeling I had forgotten something. I had my purse, my phone, some snacks… but not my cane! 😱
I reminded myself not to panic. This was my clinical trial and I know everyone at the UC Irvine clinical trial center; I’ve been meeting with them once a month for a year. It will be ok. I knew I had to do my 500 yard walk test. However, I also knew I only had to do my best. At my previous assessment I had only had the energy to walk the length of the hallway once round trip. I hadn’t been scolded. My only job is to be a body, demonstrating whether this treatment is working. I’m one of the 165 bodies that are helping determine if this drug deserves to go on to phase 3. (The trial I am in is phase 2a; to test efficacy and safety.)
My husband and kids dropped me off and I reminded myself to mask up. The only reason I have left the house for these last four months has been this trial and doctors appointments. I felt pretty good this morning. I wasn’t wobbling, I was walking on.
I am done with the twelve infusions; I received my last infusion of the trial last month. So today there was to be no infusion. (During the 90 minute infusions I often do a meditation on my phone/ nap. It’s one of the few nap times I get, having two active children at home.)
I did some of the questionnaires with my clinical trial coordinator. Then I asked if I could use the bathroom as I had downed the rest of my coffee right thirty minutes prior. So we got the urine sample out of the way, then we were in the hallway that was taped off for the 25 step test, so we checked that off the list. I felt an actual rush of anticipation when she said to walk safely, as fast as I could. She was impressed, she’s seen me do this walk before, with less vigor. I forgot to ask how fast I did it, but her positive feedback was enough to keep my energy flowing through the rest of the appointment.
Then came the cognitive assessments. First came the 15 item list, where 15 words are listed and you repeat them again and against. My best was 11 out of 15. Second, the 9 peg test. I felt like I was not doing well on this test, fumbling with those pegs, but I seemed to pick up the pace as I went on.
Third was the move the balls around on the tablet to make the picture match. This is the test when you are given an image of three colored balls on three pegs and you have to tell how many moves it would take to make the balls in image B look like the balls in image A. I felt like I had improved progress on this test. I got less confused imagining and visualizing the moves to make the pictures match.
Then Dr. Courtney came in. We performed the physical exam, and the eye assessment from hell where they give you three eye charts to read, with fading levels of clarity. By the third faint image letters start appearing and disappearing from view as you struggle to read them. I’m convinced if I do end up in hell after this life, I’ll be given that test for eternity. 😂
So, by the time we headed out for the walking test I was a little concerned how I would do, because I was feeling some cognitive fatigue after all of those assessments. Dr. Courtney walked with me for the first two or three laps of the hallway. Dr. Courtney is my MS Specialist as well as the Neurologist heading the UCI branch of the trial. We have a very good relationship, as she has been my neurologist since I was pregnant with my son (He’s four years old now.)
I felt like I wanted to impress Dr. Courtney, and she was cheering me on. She let me know that the number of laps I needed to do of the hallway to reach 500 yards was 9 laps. (I hadn’t been told that at previous appointments.) She let me know how many more laps I had to go. She said just walk and make everyone else get out of your way. There was a pregnant woman in the hall though I tried to make way for. (Disabled might trump pregnant, in terms of right away, however, I was walking well, and she was very pregnant.) Then came the men moving furniture. I was not distracted. I was in the zone. I competed all nine laps without my cane and without much difficulty. When I felt my muscles straining and tightening I used my hands to massage the back of my neck, my fists to massage the small of my back, my hands to massage the tendons connecting my chest to my shoulders. (These are all moves I learned from awesome Coach Trevor of The MS Gym!)
We returned to the room, with my two female trial coordinators and Dr. Courtney. This was the most adult social interaction I have had in some time. I was drinking it all in and enjoying myself. Isolation gets trying during Covid19 times, and though I have my husband and my kids, it’s nice to get the brain traveling down different channels with different interactions. 😉
Dr. Courtney said your EDSS score is going to go down. I felt the excitement rising and talked to my coordinators as she tabulated my new EDSS. My last EDSS was 6. Dr. Courtney explained that my walking test is a big determinate of what my EDSS score is. I waited, about 10 minutes later we resumed talking and then she said started saying goodbye. I said “wait! What’s my EDSS?” She asked my coordinators if I was allowed to I know and I said I got to know my last one! Then she admitted, my new EDSS score is a 3!!!
People with MS will know what that means, to go from a 6 to a 3, seemingly in one day. (Not really one day, six months elapsed between the two scores.) My last endurance walking test was with Dr. Sy. He had asked if I could do the test without the cane, but I felt wobbly that day. I walked up and down the hall once and my vision started to go double and blur. I felt weak, I was done.
Today I felt strong. I’ve been a nervous, tired, anxious wreak for weeks. I’ve felt low on energy. My Ocrevus infusion was delayed one month and I felt unprotected. I had missed one elezanumab infusion in April. After my May infusion I felt worn out. I still had faith in this trial, from the feedback of others in my Facebook group Remyelination- Reaching for the Possible in Multiple Sclerosis, and from my own experience. However, I was feeling disappointed. After my first three elezanumab treatments I had felt a similar tiredness, but after the fourth infusion I didn’t feel tired, until I had missed one infusion in April due to Covid19 restrictions. Was the work my body was doing to repair my myelin restated? Is that why I felt so tired? Anxiety, fear, isolation, and two small children in quarantine- it’s a lot.
Today showed me I am still capable of great things. I can’t walk 500 yards all the time. Sometimes I can barely walk 50, or even 5. But I could do it today. Dr. Courtney reminded me I did do it, she didn’t carry me. Whether I can do it everyday it’s something I am still capable of doing. That gives me so much hope. 🕊 🪔 ☀️
If you want to check out my previous post on the elezanumab trial, along with more information on the trial you can find them below. The trial is no longer recruiting, but if all goes well there will be a phase 3. (This is a double blind placebo controlled trial, so neither my doctor, the trial coordinators, or myself know if I’m actually receiving the medication. At the close of the trial I will be informed that what dose of the drug I received, or if I received the placebo.)
Clinical Trial for the Regenerative Medication Elezanumab- A patient’s perspective
Update on my participation in the clinical trial for the remyelination drug elezanumab
Going Forward: My Participation in the Clinical Trial for the Remylenation Medication Elezanumab
Elizabeth, Coach Trevor here. I just want to congratulate you on a BIG WIN during your assessments.
I was smiling as I read your words and I could feel your emotions alongside you as I read.
You write well and share very useful information and experiences for all the MS family out there.
Well done, keep moving, and congratulations on being AWESOME!
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Thank you so much Coach Trevor! Reading your comment made my morning!!! I’m going to do everything I can to keep moving! 😊🧡
P.S. During the “is this sharp or dull” test by my neurologist with a safety pin I couldn’t feel the sharpness on my left foot (right top side). My neuro asked if my foot rolls in a lot and a light went off, realizing that numbness could be causing a good deal of my fatigue. Are there any exercises you could recommend to compensate for this? This morning I did some balance exercises my physical therapist taught me and massaged my feet and legs.
Thanks Coach Trevor! Thank you for helping keeping me moving! I’m so glad I found your exercises after my relapse two years ago!!! They have helped a lot!! 🙌🏼🙌🏼