Rocky Moments Become Small Victories...
WRITTEN 9/26/23
These past few weeks have been nothing but a blur. It was jam packed with family time on top of trying to keep up with the lifestyle with MS. We spent an entire week in Bend, OR prior to my DMT infusion working with a physical therapist. I did a "Vacation with Purpose". For 5 consecutive days I spent 2 hours a day brainstorming and trying everything possible to see what we could do to help me feel better with the tonic spasms. I have had these spasms for over a year now and they have been raining on my parade for way too long. I went into this past week mentally prepared to be completely exhausted from pushing my body to it limits. In reality, I managed to make it through without any major issues other than soreness. I left that week feeling like we made progress and brought some hope back into the dark light I have been sitting in for a while now.
September 14th, 2023, through September 20th, 2023, my physical therapist and her assistant worked with me to test every limit possible. They took me kayaking, use the FES Bike, taught me how to paddle board, we hiked Pilot Butte State Park, played pickle ball, ran, biked on a recumbent bike, and even played in a gym with weights.
We have found some clues as to what may be triggering a spasm: Let's see if I can describe it...
1. When walking my foot goes through too much of a pointe and not enough flex which causes the calf muscle to spasm.
2. When I turn out my leg and squeeze my butt muscles causing the muscles to shorten, I start to spasm in the thigh.
3. To avoid a spasm while going down a steep hill I need to sidestep leading with my left leg. While going uphill sidestep leading with my right leg.
4. To lift weights or use a row machine I need to put something under my feet to make my toes point up to the ceiling.
5. When walking long distance I do better walking on uneven terrain then solid pavement. I also am unable to walk on a treadmill. We do not know the exact reason.
All in all, I am too much of a BALLERINA.
Throughout my sessions we used 3 different aides to help fatigue the muscles in my legs (Bioness, Kinesiology Tape, Xtern AFO Brace). They were having issues with the Bioness thigh attachment, so we worked mostly with the calf one. With the Bioness it helped me hike up Pilot Butte State Park which was 2 miles round trip. Uphill at first but then downhill on the way back. It was the first time that I was able to hike in the past year. We did have one spasm moment at half point, but we were able to avoid it getting worse. We started using the kinesiology tape when I was off for the day to help provide some stability while walking. It became very helpful with giving me a friendly reminder to not pointe so much. The most exciting and successful aid was the Xtern AFO Brace. It let me run without pain or a spasm. It gave me the freedom to be more active and push myself a little further. I was able to run with my 3-year-old son for the first time and he thought it was the coolest thing. At first, I was a little hesitant about trying the brace, but I had to be open to any and all things in order to get a result that I was happy with. I felt more confident and alive using the brace. It isn't the complete answer to my prayers, but it seems to be a good start. The Xtern AFO Brace normally is used for those with drop foot. I have not been diagnosed with drop foot, but the brace provides the correct support needed to participate in activities without a major spasm. After working with the Physical therapist, a request was put in with my insurance to receive my very own brace. I am excited to get it fitted and given my own on October 31, 2023.
All of us and the PT included were not sure what or if we could do anything for my spasms. Once again, I came out of the situation bringing some positive outcomes for everyone that was part of this journey. Before I finished my final PT session, I was put through the initial take in tests again to see where and if things changed. Most of my tests improved and overall, I believe they said I was better by 20%. That is a pretty big personal record for the 4 sessions I had every two weeks and the weeklong PT. I left feeling more like myself because we found some tools to keep in mind for moments of struggle. In the meantime, I have a small game plan that will hopefully help me build a stronger foundation. I am working with the Xtern brace as a new lifestyle. My son calls it " Moms Bumblebee" due to its attachments on my shoe. It definitely it tough to be seen wearing it but in time it will just be like the cane I carry with me. It's what makes me unique and the one and ONLY Inevitable MS Defyer.
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