I wish there were all kinds of great stories to share about my physical success post HSCT (bone marrow transplant), but it seems I'm in a holding pattern when it comes to walking (extremely weak hip flexors - I can walk only short distances without a break.). This is basically my one and only multiple sclerosis (MS) symptom since my bladder frequency reversed (thanks to HSCT!!!). Due to at least one symptom reversing, I consider HSCT a success and my disease halted! Ok, I still have bladder urgency sometimes (it's getting less and less with each month that passes post HSCT), but I will take sometimes over all the time. I consider myself very lucky to have had primary progressive multiple sclerosis (PPMS) for ten years (officially diagnosed seven years ago) and have been only affected significantly in one area. This course of the disease is a disability nightmare for pretty much everyone.
As a reminder, there is a 78% chance HSCT will halt MS in its tracks and out of those 78%, 41% see symptom reversal. Lest we not forgot I'm only nine months post HSCT and "they" say there is a one to two year recovery period from this procedure, so I'm still in the early stages of recovery. Because I consider my MS to be halted, I moved on to physical rehab to start seeing what I can do about my walking, specifically my gait for now. Yes, I did walk better and farther following my second chemo treatment. The way I walk now is still different/better than it was before HSCT, but not better than it was my first four months post HSCT.
I am currently in Jacksonville, Florida for six weeks of physical rehabilitation at Brooks (https://brooksrehab.org/cyberdyne/). I chose this rehab after another HSCT warrior and his wife started posting about being here to use HAL (to learn more about HAL, see: https://www.cyberdyne.jp/english/products/HAL/index.html). Brooks is the ONLY physical rehabilitation in the United States using HAL at this time. I am working full time while I'm here and consider the combination of rehab with working the hardest thing I have ever done in my life. Rehab is not for sissies!
Here are some videos of one of my recent rehabilitation treatments (I have been walking for 45 minutes a session switching between a pace of a 1.0 and 1.2 - this is three weeks into my six weeks of physical rehab with HAL)...
Fun Fact: The founder of the company that created HAL, which is in Japan, is a huge movie buff and the company name, Cyberdyne, is from the movie, Terminator, and HAL, the robotic device I use is named after HAL, the computer (HAL 9000), from 2001: A Space Odyssey.
Miscellanous Items...
- I am still unsure if I'm going through menopause or not. I'm getting mixed messages from my body. 😃
- My eyelashes are still not on a good cycle, so I'm down to stumps for the third time in nine months.
- I fell for all the Alinker (walking trike video below) hype after actress Selma Blair (who has MS) kept posting on Instagram about hers, how she loves it, and how it helps her get around. I'm lucky to get 20 feet on this thing. However, I'm keeping it and will keep working on using it better. Currently, this is how I'm using it and that is NOT at all how I should be.
- I have had pimples or at least bumps on my right side of my face for nine plus months. They came on during HSCT and never left. I will be seeing my dermatologist when I get back from rehab.
- I completed five sessions of emsculpt prior to leaving Dallas for rehab (https://bodybybtl.com/solutions/body-contouring/emsculpt/ ) on my glutes and quads to help with the muscles used for walking. I am still waiting to get the full effects of this procedure, but I am hopeful it will help with the rehab and beyond.
- In 2018 (before HSCT), I tried Ampyra (named Fampyra outside the US), https://ampyra.com/, a drug whose sole (ooh a pun) purpose to is help people with MS walk better. It worked very well for me, but my insurance would not cover the medication without me being on a disease modifying therapy for MS. My neurologist repealed the coverage denial twice, but insurance did not budge. I will be talking to my neurologist about this drug again when I see him at the end of September and see if he will prescribe it. If so, I will take it to a place near where I live to be compounded to get around the insurance issue.
Hair at 7 Months Post HSCT
Hair at 9 Months Post HSCT
